Happy Sunday, folks.
A quick run-down of a few things.
* I'm starting to see some side effects from the Revlimid. I'd been noting platelets counts were falling, but yesterday the wife noticed I had a large bruise on my arm -- nine inches long by a couple of inches wide. Not pitch-black, but definitely discolored. I have three more days of Revlimid this cycle and I'll then have a week for the counts to try to recover, but I will speak with GD about this to make sure things aren't hinky. One possibility would be to discontinue or reduce the dosage of aspirin -- it doesn't look like my blood needs to be any thinner.
* I am in a massive amount of the good kind of muscle pain after a strenuous physical therapy session on Thursday. Two days later and it still hurts. I'm pleasantly surprised by the response of my muscles to only a few sessions -- I'm already seeing the return of some definition. Strength and stamina will hopefully follow hand-in-hand but it's nice to see tangible evidence that I'm battling the dex-induced atropthy.
* In correspondence with our friend and fellow patient PB and his darling wife C, who are going through an anti-myeloma program in Michigan that sounds similar in concept to Arkansas if not in the specific regimen, I was sorry to see that the ol' constipation issue isn't just in reaction to the cocktail prescribed in Little Rock. P went to the ER same as I did. It's a sad coincidence that Revlimid had a pretty nasty impact on me in this area, too. Fortunately, I noticed it in time and started taking Senna and Docusate. The problem has now resolved, but it is another reminder: these immunomodulatory drugs do cause things to stop working in the GI department. For those going through this therapy, keep close tabs on this so it doesn't get out of control!
On the subject of others suffering from this disease, I also want to note that I heard yesterday from MH, a gentleman from the greater Los Angeles area who went to Little Rock with his wife so that she could be treated for Myeloma. This is a very sad story, but it's germane. While there is a lot of hope for this disease -- whether through Total Therapy's goal of eradicating it, or through new drugs which may hold promise for those choosing to control rather than eliminate the disease -- this is still a killer.
MH's wife was treated initially by Dr. JB, a prominent Myeloma specialist who is opposed to transplants. He represents the opposite end of the spectrum from BB, and the two are not exactly pals. JB treated MH's wife for approximately six months, and her condition worsened. She did not respond to the therapies. MH asked questions and was dissatisfied with JB's answers. When his wife took ill, she went into the care of Dr. RV, another prominent Myeloma specialist out here. I believe RV did one transplant almost immediately, since the poor lady was in very bad health. MH credits this procedure with saving her life at the time. However a few months later, her Myeloma was back, and RV referred her to BB since the Myeloma was advanced and BB's shop is often the place of last resort.
To make a long and very tragic story short, MH's lovely wife was so ill by the time she arrived in Little Rock that even an injection of Lovenox caused tumors to appear instantaneously at the site of the injections. There was nothing that could be done. MH's wife succumbed to Myeloma just a few weeks after her arrival in Little Rock.
Speaking with MH yesterday reminded me once again how fortunate I am that I was diagnosed early, that I had time to research the disease, and that my therapy has gone according to plan. There are many others for whom this disease is an even worse diagnosis, and while I am a big believer in Total Therapy there are those (about 20%) who do not respond to any treatment whatsoever, whether transplant-related or novel-drug related. My thoughts and prayers are with MH and his wife, and with the patients and families whose disease is in a more dangerous stage than my own.
Saturday, October 17, 2009
Wednesday, October 14, 2009
I'm still nervous
When I was told last night, on my cell phone with a bad connection, that I had nothing to worry about, I was so relieved that I didn't really focus enough to ask some follow-up questions. So I've emailed them to BJ. Here they are...and I'm not so sure that I have nothing to worry about.
I've been reading up on immunofixation. Briefly, as elaborated upon here before, it is a much more sensitive way of testing blood for monoclonal protein than protein electrophoresis, and can find much small amounts as a result. Once my SPEP came back low enough to justify it, they began doing immunofixation tests on me. I have had five to-date.
The first two were in late July in Little Rock, where a distinct monoclonal band was observed under immunofixation. Not surprising, as my M-Spike was around .3 or .4. This was the point at which my original hematologist in Beverly Hills said I had a "meaningless level of the disease" but I wasn't satisfied with that -- recall the difference in outcome from achieving CR versus not achieving it.
The next test was done in Los Angeles in early September. At this time, I was immunofixation negative. No monoclonal protein was detected.
The next test was done in Little Rock in mid September. At this time, the test said something like "monoclonal protein in not detected but cannot be excluded; multiple poly clonal kappa bands are also present." BB was very happy with this, pronouncing it a sign of "very profound complete remission status."
Then came the test from last week, which said that a faint monoclonal band was detected under immunofixation.
I've read up a bit on the specific terminology, and I'll let this report speak for itself. It's from the book "Proteasome Inhibitors in Cancer Therapy" -- sounds like real light reading, doesn't it? :) Regarding a patient undergoing initial trials for the proteasome inhibitor Velcade (bortezomib) the author writes:
This is very disconcerting, obviously.
So my question (in multiple parts) is as follows:
BJ's response, in real time as I wrote this blog entry, is reassuring yet not quite as detailed and direct as would optimally be the case. So I will have to have a follow-up conversation, probably first with Dr. GD as I'll see him on Tuesday and it is his lab (or the one that he outsources to) that had the two tests done. Also, we do need to keep in mind that the report from yesterday wasn't exactly fulsome. It said only: "A faint IGG (lambda) monoclonal immunoglobulin is detected."
Anyhow, her response:
Hmm...well, I do think that if it is never found again, that's probably the best indication of my overall well being. But I remind myself I am on three years (well, two years, eleven and a half months now) of very powerful medicine. What I am on now, with effectively no disease (can't quite say it without that qualifier any longer), is what most doctors prescribe to people with raging myeloma. So I'm sure the overkill approach, which has gotten me this far, will continue to work. I recall Dr. KA's presentation at the last MMRF conference where he (being a Red Sox fan) noted that protein goes to zero quickly but it's very difficult to get the last Yankee out of the system. I've got at least one straggler in there...let's hope it's not Derek Jeter
I've been reading up on immunofixation. Briefly, as elaborated upon here before, it is a much more sensitive way of testing blood for monoclonal protein than protein electrophoresis, and can find much small amounts as a result. Once my SPEP came back low enough to justify it, they began doing immunofixation tests on me. I have had five to-date.
The first two were in late July in Little Rock, where a distinct monoclonal band was observed under immunofixation. Not surprising, as my M-Spike was around .3 or .4. This was the point at which my original hematologist in Beverly Hills said I had a "meaningless level of the disease" but I wasn't satisfied with that -- recall the difference in outcome from achieving CR versus not achieving it.
The next test was done in Los Angeles in early September. At this time, I was immunofixation negative. No monoclonal protein was detected.
The next test was done in Little Rock in mid September. At this time, the test said something like "monoclonal protein in not detected but cannot be excluded; multiple poly clonal kappa bands are also present." BB was very happy with this, pronouncing it a sign of "very profound complete remission status."
Then came the test from last week, which said that a faint monoclonal band was detected under immunofixation.
I've read up a bit on the specific terminology, and I'll let this report speak for itself. It's from the book "Proteasome Inhibitors in Cancer Therapy" -- sounds like real light reading, doesn't it? :) Regarding a patient undergoing initial trials for the proteasome inhibitor Velcade (bortezomib) the author writes:
This patient had initially responded to vincristine-doxorubicin (Adriamycin)-dexamethasone (VAD) but subsequently relapsed and was refractory to VAD and topotecan-dexamethasone. She had a confirmed complete response after three cycles of bortezomib and went on to complete four cycles of therapy. Although evidence of recurrence (faint monoclonal band in immunofixation) occured 6 months later, she requried no antimyeloma therapy for a year.
This is very disconcerting, obviously.
So my question (in multiple parts) is as follows:
Is this new data or is it likely that I had the faint band when tested before? The previous test here at the same lab said it was immunofixation negative. So it does seem like a change, even if there are oligoclonal bands surrounding the monoclonal band. Or is it that I had probably not reached true immunofixation negative status before and the test here was a "false negative"? And if that is the case, am I technically in complete remission? And lastly, should we continue to look for elimination of the monoclonal band entirely as a sign of further progress?
BJ's response, in real time as I wrote this blog entry, is reassuring yet not quite as detailed and direct as would optimally be the case. So I will have to have a follow-up conversation, probably first with Dr. GD as I'll see him on Tuesday and it is his lab (or the one that he outsources to) that had the two tests done. Also, we do need to keep in mind that the report from yesterday wasn't exactly fulsome. It said only: "A faint IGG (lambda) monoclonal immunoglobulin is detected."
Anyhow, her response:
This is realllllly not important in the scheme. A faint band may be a part of the response to treatment. Do not dwell on this as you will go crazy as it is totally unfound one month and faint the next. It has no bearing on your overall well being, does not, ever, signal relapse. Not never no how!!!!!!!
Hmm...well, I do think that if it is never found again, that's probably the best indication of my overall well being. But I remind myself I am on three years (well, two years, eleven and a half months now) of very powerful medicine. What I am on now, with effectively no disease (can't quite say it without that qualifier any longer), is what most doctors prescribe to people with raging myeloma. So I'm sure the overkill approach, which has gotten me this far, will continue to work. I recall Dr. KA's presentation at the last MMRF conference where he (being a Red Sox fan) noted that protein goes to zero quickly but it's very difficult to get the last Yankee out of the system. I've got at least one straggler in there...let's hope it's not Derek Jeter
Tuesday, October 13, 2009
Huge relief
Huge relief.
Huge pain in my legs from the Dex; haven't gotten "Dex voice" yet but that is coming so I'll take some Pantroprazole before I hit the sack.
Huge bill from the best Italian food in LA, but it was worth it. Some amazing wine courtesy of my wine group.
2005 Kongsgaard "The Judge" Chardonnay - (the one I brought, and I thought one of the three best)
2003 Chateauneuf du Pape Blanc, cant recall the winery, but quite nice
2001 Riseling (German) which did not pair well with the food but which would have been quite nice if paired better
1995 Brunello di Montalcino from another producer whose name is forgotten -- a very nice bottle from a great year
1992 Jarvis -- I didn't recover from cancer to drink wine this mediocre -- the clear odd-man out for the evening
1986 Gruaud Larose -- a stupendous Bordeaux which is drinking wonderfully right now
2000 Sine Qua Non Incognito -- nothing less than the greatest Grenache ever made in the United States
There were six of us over three hours, and I had a driver for the evening, so it's not quite as bad as it looks just from reading the long list. Suffice to say, though, it was good to blow off my concerns of earlier in the day. By the end of the second wine, I was okay. But the fifth wine, my primary concern was no longer cancer, but the poor quality of that bottle. :)
This is an abject lesson in the need to remain vigilant, and a reminder that even when one achieves CR, one has to wait the magic 72 months before one can be confident that one is really cured for good. I remind myself, also, that the medications I am on for maintenance while in complete remission are the same medicines that most doctors prescribe to people with highly active disease. I remain on the "kill it, kill it, kill it!!!" program and I'm happy to be here.
So now, off to take an Ambien so I can hopefully sleep.
Nighty night, folks.
Huge pain in my legs from the Dex; haven't gotten "Dex voice" yet but that is coming so I'll take some Pantroprazole before I hit the sack.
Huge bill from the best Italian food in LA, but it was worth it. Some amazing wine courtesy of my wine group.
2005 Kongsgaard "The Judge" Chardonnay - (the one I brought, and I thought one of the three best)
2003 Chateauneuf du Pape Blanc, cant recall the winery, but quite nice
2001 Riseling (German) which did not pair well with the food but which would have been quite nice if paired better
1995 Brunello di Montalcino from another producer whose name is forgotten -- a very nice bottle from a great year
1992 Jarvis -- I didn't recover from cancer to drink wine this mediocre -- the clear odd-man out for the evening
1986 Gruaud Larose -- a stupendous Bordeaux which is drinking wonderfully right now
2000 Sine Qua Non Incognito -- nothing less than the greatest Grenache ever made in the United States
There were six of us over three hours, and I had a driver for the evening, so it's not quite as bad as it looks just from reading the long list. Suffice to say, though, it was good to blow off my concerns of earlier in the day. By the end of the second wine, I was okay. But the fifth wine, my primary concern was no longer cancer, but the poor quality of that bottle. :)
This is an abject lesson in the need to remain vigilant, and a reminder that even when one achieves CR, one has to wait the magic 72 months before one can be confident that one is really cured for good. I remind myself, also, that the medications I am on for maintenance while in complete remission are the same medicines that most doctors prescribe to people with highly active disease. I remain on the "kill it, kill it, kill it!!!" program and I'm happy to be here.
So now, off to take an Ambien so I can hopefully sleep.
Nighty night, folks.
All clear
Brief message from BB, through BJ, after reviewing the labs that I faxed to him.
"This is nothing. Do not be concerned."
HUGE relief.
Evidently, the faint monoclonal band that is there is par for the course.
Still, I won't be happy until it is gone.
More Velcade, Rev and Dex on tap and I'm very, very happy about it.
Thanks to all for your prayers and positivity -- it's been quite an afternoon. I'm off to elevate my liver numbers with some wine.
"This is nothing. Do not be concerned."
HUGE relief.
Evidently, the faint monoclonal band that is there is par for the course.
Still, I won't be happy until it is gone.
More Velcade, Rev and Dex on tap and I'm very, very happy about it.
Thanks to all for your prayers and positivity -- it's been quite an afternoon. I'm off to elevate my liver numbers with some wine.
Ruh roh, Raggy.
Who knew that there would exist such a perfect and pithy phrase, courtesy of a show about a talking dog and featuring a beatnik / yippie -- voiced by Casey Kasem, no less -- who shared an interest in what was an obvious metaphor for pot brownies (really, you're going to tell me a Scooby snack is anything else?), to convey my sense of dread?
Long story short, just returned from weekly Velcade. Platelets are in the 120s which isn't great. PSA appears normal although it is higher than zero, which my friend Dr. BM will probably tell me is a bad sign.
The real issue, though, is the data back from the immunofixation test, which reads as follows. "A faint IGG (lambda) monoclonal immunoglobulin is detected."
My head tells me that this is either test noise or only part of the picture (if there are other bands then we have an oligoclonal situation which is a positive sign). My head tells me that I wouldn't attain CR and then lose it six weeks later while the affects of my two transplants are still within 100 days. My head tells me a lot of things.
My heart, on the other hand, is quite concerned.
I have faxed all of the lab information to the irrepressible BJ, BB's chief of staff, and I'm awaiting the good doctor's thoughts on it.
I will obviously post the news as soon as I have any. Please keep your prayers and positive thoughts coming -- this has to just be a meaningless little hiccup...anything more and it's not a good situation.
All I can say right now is "zoinks, Scoob."
Lost in Translation, and the Importance of a Pillbox
Happy Tuesday, folks. Tuesday is Velcade day in these parts. Which means it's also Dex day. I don't like Dex days but they're a necessary evil! I'm fortunate, again, that I don't have the anger / anxiety side effects of Dex. I've been in physical therapy, though, and let me tell you the muscle-wasting effects of Dex are an issue based on how much I hurt! :) Hopefully I can do enough to keep the atrophy at bay.
Maintenance therapy involves a lot of "supportive care" drugs, not just the "big three" of Velcade, Revlimid and Dex. Mine are:
* Baby aspirin, to ward off deep vein thrombosis from the combination of Rev and Dex
* Pantoprazole, to counteract the esophageal problems that Dex causes
* Acyclovir, to help my compromised immune system fight off the flu
* TamiFlu, for the same reason
* MetaNx, to keep peripheral neuropathy at bay
* Alpha Lipoic Acid, for the same reason
* Ambien, in case I can't sleep on Dex day
* Zometa (by infusion) to help fill in all the holes in my bones
* Testosterone (by injection) for general mojo
There's a lot of room for "pilot error" in all this stuff. and there's also room for transcription error. I remember one time during my initial consult, where I was debating between doing Total Therapy in Arkansas versus Los Angeles, BB had dictated "patient will return to Los Angeles and determine where this whole deal is going to happen." And the transcription came back "patient will return...and determine whether this ordeal is going to happen." :)
So among other confusions, which I have now cleared up:
* I was taking only one aspirin a day; now I will take two
* I was taking Acyclovir only once per day; now I will take two
* Dr. GD's office thought I would get Zometa each month; it turns out the one infusion is all BB wants
* BB's notes were transcribed as taking 15mg x 20 days on Revlimid, followed by 4 days of 5mg. This is just flat-out wrong. The proper dosage is 15mg x 21 days, with 7 days off.
This is a lot of pills! So that daily pillbox that I put to good use during therapy (I recall one day counting the number of pills I had to take and noting that there were more than FORTY of them) will be brought back out!
Maintenance therapy involves a lot of "supportive care" drugs, not just the "big three" of Velcade, Revlimid and Dex. Mine are:
* Baby aspirin, to ward off deep vein thrombosis from the combination of Rev and Dex
* Pantoprazole, to counteract the esophageal problems that Dex causes
* Acyclovir, to help my compromised immune system fight off the flu
* TamiFlu, for the same reason
* MetaNx, to keep peripheral neuropathy at bay
* Alpha Lipoic Acid, for the same reason
* Ambien, in case I can't sleep on Dex day
* Zometa (by infusion) to help fill in all the holes in my bones
* Testosterone (by injection) for general mojo
There's a lot of room for "pilot error" in all this stuff. and there's also room for transcription error. I remember one time during my initial consult, where I was debating between doing Total Therapy in Arkansas versus Los Angeles, BB had dictated "patient will return to Los Angeles and determine where this whole deal is going to happen." And the transcription came back "patient will return...and determine whether this ordeal is going to happen." :)
So among other confusions, which I have now cleared up:
* I was taking only one aspirin a day; now I will take two
* I was taking Acyclovir only once per day; now I will take two
* Dr. GD's office thought I would get Zometa each month; it turns out the one infusion is all BB wants
* BB's notes were transcribed as taking 15mg x 20 days on Revlimid, followed by 4 days of 5mg. This is just flat-out wrong. The proper dosage is 15mg x 21 days, with 7 days off.
This is a lot of pills! So that daily pillbox that I put to good use during therapy (I recall one day counting the number of pills I had to take and noting that there were more than FORTY of them) will be brought back out!
Thursday, October 8, 2009
Apologies to Henry Mancini, and other news
Well...so this was me on Tuesday.
Slightly different dialogue, though. In the film, Chevy Chase ends by asking the doctor if he's done time, and then adds "are you gonna use the whole FIST there doc?"
My dialogue was more like this.
Me (casually) "I'd like to add a PSA test to my bloodwork since the chemo left me with a slightly enlarged prostate."
Doctor (looking like he's just found an unopened present under the tree) "Let's check that out."
Me: "I don't think that's necessary, we already know it's enlarged."
Doctor (snapping the glove on his hand) "Well *I* don't know that it's enlarged. Turn around, elbows on the table."
Me: "But I've seen the PET scan."
Doctor "You don't need a PET scan to tell you that you have an enlarged prostate, and I don't know how big it is."
Me: "Sure you do, it's 4.5cm. My best friend is a doctor and he tells me the digital exam is 98% uselesssssWOWWWWW!"
Ahem. Enough of that.
Doc says the prostate has no hardening or extra nodules and doesn't seem all that enlarged. That's good news. However it doesn't really put me any more at ease than getting the PSA and free PSA test back will. We shall see. I suppose if the PSA is high (I have long-since given up the assumption that my numbers from any given test will be in the "normal" range) we can use the digital exam to help triangulate whether or not we think there is a real problem.
They accessed my interior port (note: while this could be another euphemism for the prostate exam, I am now referring to the portacath closer to my neck) and I was prepared for the worst since it was still sensitive to the touch. However, I was relieved (shocked, actually) that it didn't hurt at all. I used a lidocaine based numbing solution called Emla cream at their instruction (and with their prescription) and on top of this they sprayed a freezing solution to numb the area, and it was pretty easy after that.
My detailed bloodwork won't be back until today or tomorrow (and there won't be an M-spike run this time...I'm sure it is zero). I probably won't bother to obtain the results (essentially blood chemistry, liver numbers, cholesterol and PSA) until Tuesday when I'm back in for my next Velcade push. Preliminary results from the bloodwork, however, are mostly encouraging.
* White blood count is normal at 5.3 and I have a large percentage of young white blood cells (granulacytes) which means the system is working and new cells are being made and so the counts should continue to stabilize.
*Hemoglobin is at 14.6, which is the highest since diagnosis! Now if my darling two year old son would stop waking up at 3AM every night and completely robbing us of sleep, I might actually have some energy.
* RDW, the measure of the variability in width of the red blood cells which is a marker for anemia and thus myeloma, is down to 13.1 which is squarely in the normal range and again the lowest it has been since diagnosis (apart from one or two strange days in the middle of high dose therapy when things were bouncing around)
* Platelets have fallen to 135, which is either barely normal or a bit low depending on which reference range is used. This is to be expected by virtue of Revlimid, which is known to cause all these types of counts to be suppressed. Frankly I'm lucky to be getting away with mild thrombocytopenia (low platelets).
On the plus side, I'd been told wayyyy back when by Dr. KA at Dana Farber that Revlimid also lowers blood pressure, and mine was 119 over 84 at the time of testing (compared to 140 over 90 at City of Hope a week earlier before I started Revlimid). So this is one side effect that I am happy for.
As to other side effects, Revlimid takes the starch outta the old collar, to use a vague euphemism. I may be getting testosterone injections to "give me back my mojo" in the words of Austin Powers. However evidently that can cause prostate problems itself (testosterone injections, not mojo) and so we want to see the PSA tests before doing that. Meanwhile, the only other impact I notice from Revlimid at this point is sleepiness, so I take it at night. Usually this side effect is temporary, lasting from around 11:30PM to the time Carson wakes up screaming.
I've received two IV administrations of Velcade -- 154 to go, or thereabouts! So far, so good. I have tolerated Velcade well in the past, so hopefully that will continue to be a non-issue.
I received an IV infusion of Zometa, a bone strengthening agent, for the first time this past Tuesday. The idea here is that bone destruction and creation is constantly happening in our bodies, and the pace in a normal healthy person keeps that person in stasis. With the myeloma, the speed of destruction outpaced the speed of repair, hence the lesions. Now those lesions have stopped worsening, and I'm back in stasis -- so I need a boost of the bone building activity in order to make up the difference.
This all sounds good and fine. Zometa, according to my nurse, has a half-life of TEN YEARS, though, which is a little unnerving. The biggest potential issue is bone necrosis in the jaw, and so I'm to have no dental work done for the next few months -- at least not without checking. I also need to find out how many times I need this stuff -- I had thought perhaps only once, but there appears to be some confusion as one of the orders appears to call for it 3X, and the nurse told me she usually does it for longer.
I need to speak with the clinic people today about both that, and the maintenance schedule since the orders on Revlimid were convoluted -- I think the oral dictation got a little screwed up. It seems to me I should be on 15mg daily for days 1-21 of a 28 day cycle, but the orders seemed to suggest 20 days of this followed by 4 days of 5mg (which isn't even an available capsule size unless I'm mistaken).
Dex remains the biggest side effect issue. I don't get the steroid rage thing, which is good (for more people than just me). But I have esophageal issues (heartburn and a raspy voice) for about 36 hours, and I feel pain in my legs from muscle atrophy, and my vision gets blurry. I have started physical therapy to rebuild muscle, so hopefully that will help somewhat. But I wrestle with the idea of asking for dose reduction. I remind myself that I have an undesirable "subtype" of Myeloma within the low-risk group, and dose reducing a drug that is effective in cancer therapy probably isn't a great idea if I can avoid it. As much as I hate the medicine, I may just have to accept it. We shall see.
So that about brings us up to date. I want to thank all of you for your support re: the last little post drama and we'll put that whole issue to rest.
Speaking of which, I've now killed the time from 3:30 to 6:15AM and can try to get about 20 minutes of sleep in before both kids wake up again, so that's where I'm headed. And then I have physical therapy in a couple of hours...that's gonna be rough on about six hours of sleep in the past two days. But I need to go...I've been deadlocked at 13 stone 3 for a couple of weeks now.
Slightly different dialogue, though. In the film, Chevy Chase ends by asking the doctor if he's done time, and then adds "are you gonna use the whole FIST there doc?"
My dialogue was more like this.
Me (casually) "I'd like to add a PSA test to my bloodwork since the chemo left me with a slightly enlarged prostate."
Doctor (looking like he's just found an unopened present under the tree) "Let's check that out."
Me: "I don't think that's necessary, we already know it's enlarged."
Doctor (snapping the glove on his hand) "Well *I* don't know that it's enlarged. Turn around, elbows on the table."
Me: "But I've seen the PET scan."
Doctor "You don't need a PET scan to tell you that you have an enlarged prostate, and I don't know how big it is."
Me: "Sure you do, it's 4.5cm. My best friend is a doctor and he tells me the digital exam is 98% uselesssssWOWWWWW!"
Ahem. Enough of that.
Doc says the prostate has no hardening or extra nodules and doesn't seem all that enlarged. That's good news. However it doesn't really put me any more at ease than getting the PSA and free PSA test back will. We shall see. I suppose if the PSA is high (I have long-since given up the assumption that my numbers from any given test will be in the "normal" range) we can use the digital exam to help triangulate whether or not we think there is a real problem.
They accessed my interior port (note: while this could be another euphemism for the prostate exam, I am now referring to the portacath closer to my neck) and I was prepared for the worst since it was still sensitive to the touch. However, I was relieved (shocked, actually) that it didn't hurt at all. I used a lidocaine based numbing solution called Emla cream at their instruction (and with their prescription) and on top of this they sprayed a freezing solution to numb the area, and it was pretty easy after that.
My detailed bloodwork won't be back until today or tomorrow (and there won't be an M-spike run this time...I'm sure it is zero). I probably won't bother to obtain the results (essentially blood chemistry, liver numbers, cholesterol and PSA) until Tuesday when I'm back in for my next Velcade push. Preliminary results from the bloodwork, however, are mostly encouraging.
* White blood count is normal at 5.3 and I have a large percentage of young white blood cells (granulacytes) which means the system is working and new cells are being made and so the counts should continue to stabilize.
*Hemoglobin is at 14.6, which is the highest since diagnosis! Now if my darling two year old son would stop waking up at 3AM every night and completely robbing us of sleep, I might actually have some energy.
* RDW, the measure of the variability in width of the red blood cells which is a marker for anemia and thus myeloma, is down to 13.1 which is squarely in the normal range and again the lowest it has been since diagnosis (apart from one or two strange days in the middle of high dose therapy when things were bouncing around)
* Platelets have fallen to 135, which is either barely normal or a bit low depending on which reference range is used. This is to be expected by virtue of Revlimid, which is known to cause all these types of counts to be suppressed. Frankly I'm lucky to be getting away with mild thrombocytopenia (low platelets).
On the plus side, I'd been told wayyyy back when by Dr. KA at Dana Farber that Revlimid also lowers blood pressure, and mine was 119 over 84 at the time of testing (compared to 140 over 90 at City of Hope a week earlier before I started Revlimid). So this is one side effect that I am happy for.
As to other side effects, Revlimid takes the starch outta the old collar, to use a vague euphemism. I may be getting testosterone injections to "give me back my mojo" in the words of Austin Powers. However evidently that can cause prostate problems itself (testosterone injections, not mojo) and so we want to see the PSA tests before doing that. Meanwhile, the only other impact I notice from Revlimid at this point is sleepiness, so I take it at night. Usually this side effect is temporary, lasting from around 11:30PM to the time Carson wakes up screaming.
I've received two IV administrations of Velcade -- 154 to go, or thereabouts! So far, so good. I have tolerated Velcade well in the past, so hopefully that will continue to be a non-issue.
I received an IV infusion of Zometa, a bone strengthening agent, for the first time this past Tuesday. The idea here is that bone destruction and creation is constantly happening in our bodies, and the pace in a normal healthy person keeps that person in stasis. With the myeloma, the speed of destruction outpaced the speed of repair, hence the lesions. Now those lesions have stopped worsening, and I'm back in stasis -- so I need a boost of the bone building activity in order to make up the difference.
This all sounds good and fine. Zometa, according to my nurse, has a half-life of TEN YEARS, though, which is a little unnerving. The biggest potential issue is bone necrosis in the jaw, and so I'm to have no dental work done for the next few months -- at least not without checking. I also need to find out how many times I need this stuff -- I had thought perhaps only once, but there appears to be some confusion as one of the orders appears to call for it 3X, and the nurse told me she usually does it for longer.
I need to speak with the clinic people today about both that, and the maintenance schedule since the orders on Revlimid were convoluted -- I think the oral dictation got a little screwed up. It seems to me I should be on 15mg daily for days 1-21 of a 28 day cycle, but the orders seemed to suggest 20 days of this followed by 4 days of 5mg (which isn't even an available capsule size unless I'm mistaken).
Dex remains the biggest side effect issue. I don't get the steroid rage thing, which is good (for more people than just me). But I have esophageal issues (heartburn and a raspy voice) for about 36 hours, and I feel pain in my legs from muscle atrophy, and my vision gets blurry. I have started physical therapy to rebuild muscle, so hopefully that will help somewhat. But I wrestle with the idea of asking for dose reduction. I remind myself that I have an undesirable "subtype" of Myeloma within the low-risk group, and dose reducing a drug that is effective in cancer therapy probably isn't a great idea if I can avoid it. As much as I hate the medicine, I may just have to accept it. We shall see.
So that about brings us up to date. I want to thank all of you for your support re: the last little post drama and we'll put that whole issue to rest.
Speaking of which, I've now killed the time from 3:30 to 6:15AM and can try to get about 20 minutes of sleep in before both kids wake up again, so that's where I'm headed. And then I have physical therapy in a couple of hours...that's gonna be rough on about six hours of sleep in the past two days. But I need to go...I've been deadlocked at 13 stone 3 for a couple of weeks now.
Tuesday, October 6, 2009
Very quick note
Hello folks.
I was going to do an update, but frankly a comment in my last entry has left me feeling pretty depressed and not really wanting to contribute anything right now. I know it shouldn't bother me, but it does -- among other things it blatantly responds to my hope of being cured by saying that I'm not, which is in my opinion just shameful. Anyhow, I'm close to having what my one-time roommate in Arkansas referred to as the "boo hoos" so I'm going to try to just keep off this blog for a day or two.
But I didn't want you to think I'd fallen off the face of the earth, hence this quick note. I'll try to update more substantively later this week.
Be well.
P.S. As an aside, a large part of me wants to take the high road and not even mention this, or even delete the offending comment. However this is all part of the journey, right? It's in keeping with the honesty of the blog -- which I think is something you appreciate -- that I report both the hurtful comment and how it made me feel. So in the end, that wins out. Thanks for understanding.
P.P.S. Please don't interpret this entry as begging for sympathy! Not that it isn't appreciated, of course, but this is a tiny thing compared to the many people that face a more dire diagnosis than I did, or who haven't responded as well to treatment. They are the ones most deserving of compassion from all of us.
I was going to do an update, but frankly a comment in my last entry has left me feeling pretty depressed and not really wanting to contribute anything right now. I know it shouldn't bother me, but it does -- among other things it blatantly responds to my hope of being cured by saying that I'm not, which is in my opinion just shameful. Anyhow, I'm close to having what my one-time roommate in Arkansas referred to as the "boo hoos" so I'm going to try to just keep off this blog for a day or two.
But I didn't want you to think I'd fallen off the face of the earth, hence this quick note. I'll try to update more substantively later this week.
Be well.
P.S. As an aside, a large part of me wants to take the high road and not even mention this, or even delete the offending comment. However this is all part of the journey, right? It's in keeping with the honesty of the blog -- which I think is something you appreciate -- that I report both the hurtful comment and how it made me feel. So in the end, that wins out. Thanks for understanding.
P.P.S. Please don't interpret this entry as begging for sympathy! Not that it isn't appreciated, of course, but this is a tiny thing compared to the many people that face a more dire diagnosis than I did, or who haven't responded as well to treatment. They are the ones most deserving of compassion from all of us.
Wednesday, September 30, 2009
Taking the blog to the next level...opinions wanted!
Boy do I hate that overused phrased. Not "opinions wanted" or course but the ridiculous "taking it to the next level" which is so overused and yet apropos here so I find myself forced to use it.
I have come to adore all of you, my friends and family and acquaintances and fellow MM sufferers / warriors / wanderers depending on your disposition and preference. :) And I love the little community that we have here.
At the same time, I have come to realize from a variety of sources that my experiences in going through diagnosis and treatment, and my honesty in recounting it without regard to my dignity (though thankfully there's been a little less of those awful experiences lately!) and my particular attitude towards fighting the disease, plus the time that I had to research my options and learn about the disease, all contribute to making this blog something that can be very helpful to newly diagnosed patients, as well as patients going through the treatments, and their caregivers.
Wow, what a tortuously long sentence.
I found some of the books I bought on Myeloma left a little to be desired when I was diagnosed, and if nothing else, my voice is certainly different from the books I read on the subject. I wrote in here a couple of times during treatment that one book I read said that "life will never be the same" and "you will measure your birthday from the date of your transplant" etc. etc. and how this seems incredibly defeatist to me. I am not trying to take anything away from the experience of that person -- everyone's disease and everyone's approach to it is different -- but I would have been helped, I think, by a different voice. And I hope that my blog can contribute to such a voice.
So my question for you fine folks is about format. Here's what I was thinking:
* I think the honesty of my blog is of paramount importance. There are times, for example, when I was on dilaudid and my thoughts were probably incomprehensible and filled with spelling mistakes. I don't want to edit these out.
* I think the gradual reveal and increase in knowledge in the blog is important. There are times when I didn't know as much and the comments or questions I posted here reflected some of that lack of knowledge -- whether it be misspelling (or misremembering) one of my medications, or not understanding some aspect of the disease or treatment. I don't want to edit these out.
The solution, I think, is to have each blog entry, and then beneath that an italicized update / errata correction / other notes to put the entry into a more full context as needed. I'd like your thoughts on this, hence the poll on the page.
Secondarily, your comments and positive urging along the way are a critical piece of this blog. When the time comes, if it does come to being published, I'll ask you individually (to the extent I am able to reach you) if it's okay to include your comments. I will almost certainly exclude names from them, however. For a preliminary indication of your thoughts on this, another poll is featured.
Thirdly, I have used initials for all medical personnel throughout, and I wanted to preserve anonymity in case I had something less than flattering to say about one or more of them. There is one doctor who I had a bad consult with, for example. And another whose opinions I think are dangerous. And these opinions might not be something I want to publish. On the other hand, the majority of doctors are fantastic, and anybody with Google and a modicum of interest has certainly already determined who BB is. Moreover, I believe many of the doctors herein saved my life, and I want to call them out by name (certainly BB, and several others).
So I'd also like your thoughts on how I might effectively use the full names where appropriate.
Thanks very much for your thoughts on these burnings issues!!! :)
P.S. Mandatory clinical update: 20mg of dex was enough to keep me up until 3AM. Next time I must take Ambien on "dex days." I will also be adding two supplements for general health and to ensure no neuropathy from the Velcade -- the Alpha Lipoic Acid in the morning, and the MetNx at night (as the latter can cause drowsiness). I might try to get some Vitamin D in there at some point although I don't want to boost the immune system too much since the goal of all these meds is to keep it somewhat suppressed.
I have come to adore all of you, my friends and family and acquaintances and fellow MM sufferers / warriors / wanderers depending on your disposition and preference. :) And I love the little community that we have here.
At the same time, I have come to realize from a variety of sources that my experiences in going through diagnosis and treatment, and my honesty in recounting it without regard to my dignity (though thankfully there's been a little less of those awful experiences lately!) and my particular attitude towards fighting the disease, plus the time that I had to research my options and learn about the disease, all contribute to making this blog something that can be very helpful to newly diagnosed patients, as well as patients going through the treatments, and their caregivers.
Wow, what a tortuously long sentence.
I found some of the books I bought on Myeloma left a little to be desired when I was diagnosed, and if nothing else, my voice is certainly different from the books I read on the subject. I wrote in here a couple of times during treatment that one book I read said that "life will never be the same" and "you will measure your birthday from the date of your transplant" etc. etc. and how this seems incredibly defeatist to me. I am not trying to take anything away from the experience of that person -- everyone's disease and everyone's approach to it is different -- but I would have been helped, I think, by a different voice. And I hope that my blog can contribute to such a voice.
So my question for you fine folks is about format. Here's what I was thinking:
* I think the honesty of my blog is of paramount importance. There are times, for example, when I was on dilaudid and my thoughts were probably incomprehensible and filled with spelling mistakes. I don't want to edit these out.
* I think the gradual reveal and increase in knowledge in the blog is important. There are times when I didn't know as much and the comments or questions I posted here reflected some of that lack of knowledge -- whether it be misspelling (or misremembering) one of my medications, or not understanding some aspect of the disease or treatment. I don't want to edit these out.
The solution, I think, is to have each blog entry, and then beneath that an italicized update / errata correction / other notes to put the entry into a more full context as needed. I'd like your thoughts on this, hence the poll on the page.
Secondarily, your comments and positive urging along the way are a critical piece of this blog. When the time comes, if it does come to being published, I'll ask you individually (to the extent I am able to reach you) if it's okay to include your comments. I will almost certainly exclude names from them, however. For a preliminary indication of your thoughts on this, another poll is featured.
Thirdly, I have used initials for all medical personnel throughout, and I wanted to preserve anonymity in case I had something less than flattering to say about one or more of them. There is one doctor who I had a bad consult with, for example. And another whose opinions I think are dangerous. And these opinions might not be something I want to publish. On the other hand, the majority of doctors are fantastic, and anybody with Google and a modicum of interest has certainly already determined who BB is. Moreover, I believe many of the doctors herein saved my life, and I want to call them out by name (certainly BB, and several others).
So I'd also like your thoughts on how I might effectively use the full names where appropriate.
Thanks very much for your thoughts on these burnings issues!!! :)
P.S. Mandatory clinical update: 20mg of dex was enough to keep me up until 3AM. Next time I must take Ambien on "dex days." I will also be adding two supplements for general health and to ensure no neuropathy from the Velcade -- the Alpha Lipoic Acid in the morning, and the MetNx at night (as the latter can cause drowsiness). I might try to get some Vitamin D in there at some point although I don't want to boost the immune system too much since the goal of all these meds is to keep it somewhat suppressed.
Tuesday, September 29, 2009
Down the hatch, and other stories!
So things went reasonably well at the City of Hope today, surprisingly enough!
I woke up this morning and popped 20mg of dex, along with Acyclovir (400mg), Tamiflu (75mg), Pantoprazole (the heartburn is acting up) and 10mg of Lipitor. Funny...I remember going on the Lipitor several years ago and lamenting the fact that I would have to be on medication for the rest of my life. How little did I know...
We went to City of Hope and after checking in, we went to the surgery consult. I had the person at check in, the nurse that checked my blood pressure and admitted me to the surgery consult, and the physician's assistant who looked at me ALL say "so, you're here for a Hickman removal?" And I explained to each that I'd had numerous conversations to try to set them straight there, but every time, the administration at CoH screwed it up. I don't have a Hickman, and it's not a removal.
Once we got over that frustrating little barrier, the PA was actually very helpful. He explained that the portacath was placed higher in my chest than they would do, and that it might be sitting on nerve ganglia, and that it's very rare to experience this type of pain. We talked about several options, including keeping it, removing it, or replacing it with a Pik-line (which would be similar to what I had...no thanks, I like taking a shower like a normal person and not having to worry about changing the thing out every couple of months). His ultimate point of view was that it's only been two months post-op, and we should check again in a month and then decide what to do.
From there, we went to get labs drawn. After a little mixup (of course they didn't have down that I had a portacath and sent us to the wrong lab) we went to City of Hope's version of the infusion center. The nurse who helped me was a WONDERFULLY warm person who informed me that her husband's friend was just diagnosed with MM. I get her the history of my research and treatment, and mentioned this blog to her, and offered my perspective and help.
She did a very good job of accessing my port -- which is to say it only hurt a bit more than a regular IV placement, not horribly. She didn't touch the painful line -- I'll have that done next week at GD's office. She said that the placement was deeper than usual. That might have something to do with the pain, which she said was an issue in maybe only one in a hundred portacaths in her experience. She left the IV in, and we went to check in with Dr. SF.
It was now a little after 1PM, and they checked us in, and THEN said that the appointment wasn't until 4:30. So we went to lunch, came back, and killed 45 minutes by reading my charts, including the labwork that had been done earlier that day.
Long story short: the lab numbers all look great. All my counts are normal, although platelets at 160 are on the low end of normal. But Hemoglobin has come roaring back and is now at 14.5, which explains why my energy level has been improving. White counts are normal. Electrolytes are normal. Total protein is normal at 7.5 and Albumin is roaring back to 4.6, so globulin is a very nice 2.9 figure -- considering this number was around 10 at one point, with over 8 from monoclonal protein, it's great to see it in a healthy range.
Then we met with SF, and I am reminded once again of what a wonderful, warm, compassionate, funny and extremely intelligent doctor he is. I told him I feel like I have the "dream team" of physicians on this project. Some highlights:
* He looked at the maintenance instructions from BB and, smiling, shook his head. "Typical BB." Was his response. It's powerful stuff, definitely. But he is on board for it.
* He agrees that reimmunization isn't necessary, although at some point we'll run a test to confirm that I have residual antibodies present in my blood for all my childhood diseases. He suspects that I have rebuilt my immunity to Varicella (Shingles) and that I hopefully will not have another episode of those, which is a good thing. He is not as sold on the prophylactic value of daily Tamiflu -- in fact he was quite skeptical -- but I'm sticking with the program as it helped me get rid of a burgeoning cold last week. He said he thought it would be okay for me to get a dead flu vaccine -- we'll see about that. I'll probably wait a couple of years until the immune system is working fine again. He wasn't quite as sure about travelling to India or other exotic locales where the "herd immunity" is fundamentally different from the immunity of those around me in the US or similarly innoculated societies.
* The heartburn which I now have is a result of the Dex, and that explains why Pantoprazole is needed. Hopefully I can discontinue it at some distant time in the future.
* The enlarged prostate may or may not be a result of the Melphalan but in any case it has no connection to increased likelihood of prostate cancer. I can have PSAs run but they are mostly useful to set as a baseline.
* The portacath should not hurt like this and it should come out. He recommended putting one on the other side. He said that if I was even CONTEMPLATING taking something like Dilaudid before having it accessed, it was crazy to keep it in, and felt that two months post-op was MORE than enough time for the discomfort to have stopped. I'm going to see how bad the access is next Tuesday before I make a decision on that one.
After our consult, I got my Velcade and we went home without further event. I gulped down my first of about 800 Revlimid pills tonight. Yum!
And soon, it's off to sleep, right after I have a baby aspirin to ward off any potential bloodclots from the Rev/Dex combo. I will dutifully report any side effects from maintenance, and will certainly be back as next Tuesday draws near, if nothing merits an update before then.
But soon, however, I will have a poll for all of you, or a questionnaire at least. Stay tuned for that gripping development! :)
Best to you and yours,
Nick
I woke up this morning and popped 20mg of dex, along with Acyclovir (400mg), Tamiflu (75mg), Pantoprazole (the heartburn is acting up) and 10mg of Lipitor. Funny...I remember going on the Lipitor several years ago and lamenting the fact that I would have to be on medication for the rest of my life. How little did I know...
We went to City of Hope and after checking in, we went to the surgery consult. I had the person at check in, the nurse that checked my blood pressure and admitted me to the surgery consult, and the physician's assistant who looked at me ALL say "so, you're here for a Hickman removal?" And I explained to each that I'd had numerous conversations to try to set them straight there, but every time, the administration at CoH screwed it up. I don't have a Hickman, and it's not a removal.
Once we got over that frustrating little barrier, the PA was actually very helpful. He explained that the portacath was placed higher in my chest than they would do, and that it might be sitting on nerve ganglia, and that it's very rare to experience this type of pain. We talked about several options, including keeping it, removing it, or replacing it with a Pik-line (which would be similar to what I had...no thanks, I like taking a shower like a normal person and not having to worry about changing the thing out every couple of months). His ultimate point of view was that it's only been two months post-op, and we should check again in a month and then decide what to do.
From there, we went to get labs drawn. After a little mixup (of course they didn't have down that I had a portacath and sent us to the wrong lab) we went to City of Hope's version of the infusion center. The nurse who helped me was a WONDERFULLY warm person who informed me that her husband's friend was just diagnosed with MM. I get her the history of my research and treatment, and mentioned this blog to her, and offered my perspective and help.
She did a very good job of accessing my port -- which is to say it only hurt a bit more than a regular IV placement, not horribly. She didn't touch the painful line -- I'll have that done next week at GD's office. She said that the placement was deeper than usual. That might have something to do with the pain, which she said was an issue in maybe only one in a hundred portacaths in her experience. She left the IV in, and we went to check in with Dr. SF.
It was now a little after 1PM, and they checked us in, and THEN said that the appointment wasn't until 4:30. So we went to lunch, came back, and killed 45 minutes by reading my charts, including the labwork that had been done earlier that day.
Long story short: the lab numbers all look great. All my counts are normal, although platelets at 160 are on the low end of normal. But Hemoglobin has come roaring back and is now at 14.5, which explains why my energy level has been improving. White counts are normal. Electrolytes are normal. Total protein is normal at 7.5 and Albumin is roaring back to 4.6, so globulin is a very nice 2.9 figure -- considering this number was around 10 at one point, with over 8 from monoclonal protein, it's great to see it in a healthy range.
Then we met with SF, and I am reminded once again of what a wonderful, warm, compassionate, funny and extremely intelligent doctor he is. I told him I feel like I have the "dream team" of physicians on this project. Some highlights:
* He looked at the maintenance instructions from BB and, smiling, shook his head. "Typical BB." Was his response. It's powerful stuff, definitely. But he is on board for it.
* He agrees that reimmunization isn't necessary, although at some point we'll run a test to confirm that I have residual antibodies present in my blood for all my childhood diseases. He suspects that I have rebuilt my immunity to Varicella (Shingles) and that I hopefully will not have another episode of those, which is a good thing. He is not as sold on the prophylactic value of daily Tamiflu -- in fact he was quite skeptical -- but I'm sticking with the program as it helped me get rid of a burgeoning cold last week. He said he thought it would be okay for me to get a dead flu vaccine -- we'll see about that. I'll probably wait a couple of years until the immune system is working fine again. He wasn't quite as sure about travelling to India or other exotic locales where the "herd immunity" is fundamentally different from the immunity of those around me in the US or similarly innoculated societies.
* The heartburn which I now have is a result of the Dex, and that explains why Pantoprazole is needed. Hopefully I can discontinue it at some distant time in the future.
* The enlarged prostate may or may not be a result of the Melphalan but in any case it has no connection to increased likelihood of prostate cancer. I can have PSAs run but they are mostly useful to set as a baseline.
* The portacath should not hurt like this and it should come out. He recommended putting one on the other side. He said that if I was even CONTEMPLATING taking something like Dilaudid before having it accessed, it was crazy to keep it in, and felt that two months post-op was MORE than enough time for the discomfort to have stopped. I'm going to see how bad the access is next Tuesday before I make a decision on that one.
After our consult, I got my Velcade and we went home without further event. I gulped down my first of about 800 Revlimid pills tonight. Yum!
And soon, it's off to sleep, right after I have a baby aspirin to ward off any potential bloodclots from the Rev/Dex combo. I will dutifully report any side effects from maintenance, and will certainly be back as next Tuesday draws near, if nothing merits an update before then.
But soon, however, I will have a poll for all of you, or a questionnaire at least. Stay tuned for that gripping development! :)
Best to you and yours,
Nick
Monday, September 28, 2009
Reflections on the Eve of Maintenance
So the blissful eight weeks without cancer therapy ends tomorrow. It's another moment for reflection on the path I've chosen. A year ago, when I began this journey, few other doctors believed in maintenance therapy. Now, more are getting on the bandwagon, as they believe it's critical to keeping the cancer away for a longer period of time. But only BB and his team (with the possible exception of his disciple in Utah) believe in maintenance therapy of the type he is prescribing as part of an active plan to kill the disease once and for all.
I'll be on Velcade every Tuesday, Revlimid for 21 days out of every 28, 20 mg of dex on every Tuesday, and then once a month Zometa and Testosterone, but those aren't as big a deal.
When I explained this maintenance regimen to Kathy of the MMRF, she noted that it is all semantics but this is aggressive therapy. And indeed that is true. For most doctors, this is probably more or less the cocktail that they would use to get rid of disease that is running rampant -- with a few changes in the cadence, perhaps. But for me, in a body that has such low levels of the disease that they are not detectable by the most sensitive tests done, I'll take this cocktail for the next three years with the hope of killing every last rogue cancer cell.
It's both daunting and trivial compared with what I've been through -- but I have something of a sense of dread nonetheless. Some of this comes from that damn portacath, which hurts, still. I don't even want them using it tomorrow, flushing the line, anything -- I just want it out of me, once I talk with people that access them all the time and who can tell me if this was placed too deep, or incorrectly, or try to describe why it hurts so bloody much.
It's also daunting because of the long list of side effects that these medications can cause. And yet, the biggest side effect of not taking them is death -- and that's a pretty bad side effect experienced by the majority of people that are not on these medications. So on them I shall be.
Absent a large pile of nickels for dramatic effect, want to see what $325 looks like?
On the left, is a bottle of Salon champagne, one of the most rarified and expensive Champagnes in the world (Dom Perignon is nothing next to this stuff). It's from 1996, which is one of the best modern years of Champagne. It is the type of thing that one drinks to celebrate being cured of cancer -- if one has a bottle of it, one is very lucky and it's unlikely I'll ever have too many more in my life.
On the right, is a single 15 mg pill of Revlimid. Much less enjoyable than the Salon, with side effects that are much more dire than simply the warm feeling and love-of-all-mankind that is typically brought about by a few of glasses of wine. And I must swallow 21 of these pills a month for the next three years.
The same amount of money. One consumed for enjoyment and celebration if one is very lucky, maybe once or twice in one's lifetime. And the other taken more days than not for the next three years to ensure that one is alive to enjoy the Champagne. A perversely symbiotic relationship, it seems.
Something is wrong with this picture. But in contrast to where you think I'm going with this, what is wrong with the picture is not that Celgene is making a lot of money off that pill. In a few years, it will be generic and nowhere near as expensive. In the meantime, Celgene needs to earn a profit on the research it invested in this pill, which will save my life. I have to take the lousy pill to make sure I'm around to enjoy the Champagne -- and the pills are making up altogether too much of my future, while the Champagne will have to wait until I am six years out on BB's curve, and thus cured. Fortunately, it's ageworthy.
I guess my point is, I wish life was more about Champagne and less about pills. But on the other hand, a lot of this is about state of mind, and every day that includes pill-taking is still a gift of another day. So thank God (and Celgene, particularly if you are a scientific atheist) for that little marvelous pill nonetheless! And thank God, regardless of whatever flaws exist in our healthcare system here, that my insurance covers Revlimid for newly diagnosed patients. I will not politicize this blog, but I will point out that NHS in the UK does not permit Revlimid in newly diagnosed patients. Likewise, there is a very good man who reads this blog in New Zealand, and he has been through several years of hell with his Myeloma, which has battled back despite being put into remission from previous treatment. This man deserves Revlimid, and Pomalidomide if needed, and Velcade, so that his disease can be shut down again. And it's not that easy. As I understand it, Velcade isn't covered.
This disease is hard enough to contend with without having to worry about access to treatment -- and so my prayer and positive thought for the day is that all people suffering from this disease, regardless of where they live or what type of healthcare system they live in, have access to treatments that will relieve their suffering and restore their health.
As for me...I'm glad to take that pill, and I'll be even more glad to drink that Champagne when the time comes. But for tomorrow, I am trying to steel myself for what I anticipate to be a series of administrative blunders and ineptitude, interrupted by what will be, I am sure, a great meeting with Dr. SF. More to come after that!
I'll be on Velcade every Tuesday, Revlimid for 21 days out of every 28, 20 mg of dex on every Tuesday, and then once a month Zometa and Testosterone, but those aren't as big a deal.
When I explained this maintenance regimen to Kathy of the MMRF, she noted that it is all semantics but this is aggressive therapy. And indeed that is true. For most doctors, this is probably more or less the cocktail that they would use to get rid of disease that is running rampant -- with a few changes in the cadence, perhaps. But for me, in a body that has such low levels of the disease that they are not detectable by the most sensitive tests done, I'll take this cocktail for the next three years with the hope of killing every last rogue cancer cell.
It's both daunting and trivial compared with what I've been through -- but I have something of a sense of dread nonetheless. Some of this comes from that damn portacath, which hurts, still. I don't even want them using it tomorrow, flushing the line, anything -- I just want it out of me, once I talk with people that access them all the time and who can tell me if this was placed too deep, or incorrectly, or try to describe why it hurts so bloody much.
It's also daunting because of the long list of side effects that these medications can cause. And yet, the biggest side effect of not taking them is death -- and that's a pretty bad side effect experienced by the majority of people that are not on these medications. So on them I shall be.
Absent a large pile of nickels for dramatic effect, want to see what $325 looks like?
On the left, is a bottle of Salon champagne, one of the most rarified and expensive Champagnes in the world (Dom Perignon is nothing next to this stuff). It's from 1996, which is one of the best modern years of Champagne. It is the type of thing that one drinks to celebrate being cured of cancer -- if one has a bottle of it, one is very lucky and it's unlikely I'll ever have too many more in my life.
On the right, is a single 15 mg pill of Revlimid. Much less enjoyable than the Salon, with side effects that are much more dire than simply the warm feeling and love-of-all-mankind that is typically brought about by a few of glasses of wine. And I must swallow 21 of these pills a month for the next three years.
The same amount of money. One consumed for enjoyment and celebration if one is very lucky, maybe once or twice in one's lifetime. And the other taken more days than not for the next three years to ensure that one is alive to enjoy the Champagne. A perversely symbiotic relationship, it seems.
Something is wrong with this picture. But in contrast to where you think I'm going with this, what is wrong with the picture is not that Celgene is making a lot of money off that pill. In a few years, it will be generic and nowhere near as expensive. In the meantime, Celgene needs to earn a profit on the research it invested in this pill, which will save my life. I have to take the lousy pill to make sure I'm around to enjoy the Champagne -- and the pills are making up altogether too much of my future, while the Champagne will have to wait until I am six years out on BB's curve, and thus cured. Fortunately, it's ageworthy.
I guess my point is, I wish life was more about Champagne and less about pills. But on the other hand, a lot of this is about state of mind, and every day that includes pill-taking is still a gift of another day. So thank God (and Celgene, particularly if you are a scientific atheist) for that little marvelous pill nonetheless! And thank God, regardless of whatever flaws exist in our healthcare system here, that my insurance covers Revlimid for newly diagnosed patients. I will not politicize this blog, but I will point out that NHS in the UK does not permit Revlimid in newly diagnosed patients. Likewise, there is a very good man who reads this blog in New Zealand, and he has been through several years of hell with his Myeloma, which has battled back despite being put into remission from previous treatment. This man deserves Revlimid, and Pomalidomide if needed, and Velcade, so that his disease can be shut down again. And it's not that easy. As I understand it, Velcade isn't covered.
This disease is hard enough to contend with without having to worry about access to treatment -- and so my prayer and positive thought for the day is that all people suffering from this disease, regardless of where they live or what type of healthcare system they live in, have access to treatments that will relieve their suffering and restore their health.
As for me...I'm glad to take that pill, and I'll be even more glad to drink that Champagne when the time comes. But for tomorrow, I am trying to steel myself for what I anticipate to be a series of administrative blunders and ineptitude, interrupted by what will be, I am sure, a great meeting with Dr. SF. More to come after that!
Thursday, September 24, 2009
It's me noggin, not me peepers
Just back from the opthamologist (dr. DA, who is awesome, not that it will do any of you any good since I'm only listing initials -- if you live in Southern California and need a good opthamologist, email me!). I have no cataracts or anything physiologicallyl wrong with my eyes. My vision is still 20/20 -- which means it was probably BETTER than 20/20 before treatment since I have definitely lost some crispness.
My eyes are dilated so I can't really see what I am typing...thus I'll make this a short note.
I do want to mention that in my appreciation for Kathy Giusti and the MMRF, I don't want to discount the many, many people who have assisted in fundraising on the grassroots level. My point yesterday was that this t type of fundraising was not what they have in mind when considering a person for their board -- at that point it is about (very) large donations.
In any case, a great many people are contributing towards advancing treatment for this disease and as a patient, I am appreciative of everybody's efforts!
My eyes are dilated so I can't really see what I am typing...thus I'll make this a short note.
I do want to mention that in my appreciation for Kathy Giusti and the MMRF, I don't want to discount the many, many people who have assisted in fundraising on the grassroots level. My point yesterday was that this t type of fundraising was not what they have in mind when considering a person for their board -- at that point it is about (very) large donations.
In any case, a great many people are contributing towards advancing treatment for this disease and as a patient, I am appreciative of everybody's efforts!
Wednesday, September 23, 2009
Rule Brittania, City of Dopes Redux and My Breakfast with Kathy
Morning folks.
I think I had mentioned that BB nonchalantly suggested I lose a large amount of weight which, upon further consultation and showing him the size of my calves, was "dose reduced" so to speak to around 15 pounds. I'm energized to do so.
While I was in Little Rock over the summer, my intrepid two-year-old son somehow managed to adjust our digital scale so that it reads out in stone. That's right, stone. I actually think this is so funny that I'm not going to try to change it back. I currently weight 13 stone 3, and my goal is 12 stone! Hahaha!! I love saying that. All British measurements are fantastic. I seem to recall that the "foot" came from the literal size of a certain ruler's foot. I wonder if Henry VIII had an enormous kidney stone? :) Or perhaps some less hefty king was able to lift a rock weighing precisely fourteen pounds and smart advisors noted that this was the most one person could possibly lift and thus it became the proper unit of measurement.
I am at a bit of a lull in between therapeutic measures right now. I'm just taking acyclovir and tamiflu on a prohylactic basis. My energy level is beginning to improve as red counts increase. I spoke with my primary care doctor PZ and in light of the arterial damage and enlarged prostate courtesy of the chemo, he wants me back on Lipitor immediately, and to order regular PSA tests along with the rest of my bloodwork. So I'll start to incorporate those.
I had a lovely and lengthy breakfast meeting this morning with Kathy Giusti of the MMRF. I've written about her before, but the influence this woman has had on the future of Myeloma cannot really be overstated. In fact, other than doctors performing the research, I have a hard time imagining any one person being more important towards developing a cure that involves a bit less than what I've been through. We patients have her and her organization to thank for the rapid development of carfilzomib (next generation Velcade) and pomalidomide (next generation Revlimid) which will be the drugs that I may need to fall on if all of this current treatment fails.
I met with Kathy to thank her for her early counsel and also to ask, rather directly, how I might join the board of the MMRF. This is, I gather, not the first time she's had such a request. I do think I bring an interesting combination of skill and perspective to such a situation. That said, they don't really lose board members, and membership is a "give/get" situation -- meaning board members must either donate sizable amounts of money for the privilege of sitting on the board, or must raise money from other sources for same. I don't particularly like flogging people for money so this isn't in my sweetspot, exactly.
Having said that, we also discussed a potential venture capital model for spurring ongoing research and I think I brought a few good ideas to that conversation. I will likely be helping the MMRF to flesh out these concepts a bit, and potentially working with the head of their west coast operations, perhaps on a regional board or something along those lines. Whatever the case, it's a start in my efforts to direct some of my energy back towards helping find a clear cure for this disease.
Lastly, the administrative frustrations with City of Hope continue. I am scheduled to begin my maintenance therapy with GD on 9/29. I was also scheduled for a CONSULT ON MY PORTACATH (the reason for my frustrated all caps will be explained shortly) at City of Hope on 9/29, and to see Dr. SF while there. The consult was to be at 11AM, the appointment at 1:30.
Normally, I will see GD in the afternoon, but when I went to change this one appointment to the morning, I wasn't able to -- evidently 9/28 is a Jewish holiday and that means 9/29 is packed solid.
No problem, or so I thought. After all, I can get my Velcade at City of Hope.
Long story short, four phone calls later, they still think I have a Hickman Catheter (not the same time as a port). They still think the 11AM consult is actually a removal. They will draw labs, allegedly, but they won't be able to dispense Velcade until after the results have been reviewed by SF. And the appointment with SF isn't until 4:30PM now. So the best I can hope for is they'll have to stick me twice, which is an issue given how damn painful this stupid portacath is. They STILL don't understand what I have in my chest (a Hickman is what I had in little rock and it can be removed in about ten seconds; mine is surgically embedded under my skin and is a totally different animal -- it has to be removed under anaesthesia).
I'm not holding out hope for much other than extreme frustration out there -- probably accompanied by more people thinking that I need blood pressure meds as a result of dealing with their own incompetence. Grrrr....
I think I had mentioned that BB nonchalantly suggested I lose a large amount of weight which, upon further consultation and showing him the size of my calves, was "dose reduced" so to speak to around 15 pounds. I'm energized to do so.
While I was in Little Rock over the summer, my intrepid two-year-old son somehow managed to adjust our digital scale so that it reads out in stone. That's right, stone. I actually think this is so funny that I'm not going to try to change it back. I currently weight 13 stone 3, and my goal is 12 stone! Hahaha!! I love saying that. All British measurements are fantastic. I seem to recall that the "foot" came from the literal size of a certain ruler's foot. I wonder if Henry VIII had an enormous kidney stone? :) Or perhaps some less hefty king was able to lift a rock weighing precisely fourteen pounds and smart advisors noted that this was the most one person could possibly lift and thus it became the proper unit of measurement.
I am at a bit of a lull in between therapeutic measures right now. I'm just taking acyclovir and tamiflu on a prohylactic basis. My energy level is beginning to improve as red counts increase. I spoke with my primary care doctor PZ and in light of the arterial damage and enlarged prostate courtesy of the chemo, he wants me back on Lipitor immediately, and to order regular PSA tests along with the rest of my bloodwork. So I'll start to incorporate those.
I had a lovely and lengthy breakfast meeting this morning with Kathy Giusti of the MMRF. I've written about her before, but the influence this woman has had on the future of Myeloma cannot really be overstated. In fact, other than doctors performing the research, I have a hard time imagining any one person being more important towards developing a cure that involves a bit less than what I've been through. We patients have her and her organization to thank for the rapid development of carfilzomib (next generation Velcade) and pomalidomide (next generation Revlimid) which will be the drugs that I may need to fall on if all of this current treatment fails.
I met with Kathy to thank her for her early counsel and also to ask, rather directly, how I might join the board of the MMRF. This is, I gather, not the first time she's had such a request. I do think I bring an interesting combination of skill and perspective to such a situation. That said, they don't really lose board members, and membership is a "give/get" situation -- meaning board members must either donate sizable amounts of money for the privilege of sitting on the board, or must raise money from other sources for same. I don't particularly like flogging people for money so this isn't in my sweetspot, exactly.
Having said that, we also discussed a potential venture capital model for spurring ongoing research and I think I brought a few good ideas to that conversation. I will likely be helping the MMRF to flesh out these concepts a bit, and potentially working with the head of their west coast operations, perhaps on a regional board or something along those lines. Whatever the case, it's a start in my efforts to direct some of my energy back towards helping find a clear cure for this disease.
Lastly, the administrative frustrations with City of Hope continue. I am scheduled to begin my maintenance therapy with GD on 9/29. I was also scheduled for a CONSULT ON MY PORTACATH (the reason for my frustrated all caps will be explained shortly) at City of Hope on 9/29, and to see Dr. SF while there. The consult was to be at 11AM, the appointment at 1:30.
Normally, I will see GD in the afternoon, but when I went to change this one appointment to the morning, I wasn't able to -- evidently 9/28 is a Jewish holiday and that means 9/29 is packed solid.
No problem, or so I thought. After all, I can get my Velcade at City of Hope.
Long story short, four phone calls later, they still think I have a Hickman Catheter (not the same time as a port). They still think the 11AM consult is actually a removal. They will draw labs, allegedly, but they won't be able to dispense Velcade until after the results have been reviewed by SF. And the appointment with SF isn't until 4:30PM now. So the best I can hope for is they'll have to stick me twice, which is an issue given how damn painful this stupid portacath is. They STILL don't understand what I have in my chest (a Hickman is what I had in little rock and it can be removed in about ten seconds; mine is surgically embedded under my skin and is a totally different animal -- it has to be removed under anaesthesia).
I'm not holding out hope for much other than extreme frustration out there -- probably accompanied by more people thinking that I need blood pressure meds as a result of dealing with their own incompetence. Grrrr....
Friday, September 18, 2009
Quick thoughts on immunization from BB
I forgot to mention, I did ask BB a bit more about immunization theory, etc. Some highlights.
* My immune system functionality should recover fully. This conflicts slightly with BJ commenting that she had never seen a "CD4 count return to normal" (these are the famous "helper" T-cells). BB seemed confident. We shall see.
* My immune system will "remember" previously acquired immunities. This is a big relief to me. No reimmunization is required.
* The fact that I got shingles once does not increase the likelihood that I will get it again. It is 98% gone now, by the way, and there looks to be no residual pain. BB asked why I was not immediately put on IV Acyclovir, which is consistent with his aggressive nature. By comparison, my primary care physician said that would never happen unless severe complications occurred.
* During flu season, I should NOT be vaccinated, but I should take Tamiflu instead. This is somewhat at odds with the notion of a fully-recovered immune system...shouldn't I be able to tolerate a live vaccine if that's the case? Maybe this is somewhere down the line.
I'll ask SF about this if I see him when I do the consult on the portacath, and will also ask GD about this when I see him in a couple of weeks for maintenance. I may even ask Kathy G about it when I see her next week for breakfast.
* My immune system functionality should recover fully. This conflicts slightly with BJ commenting that she had never seen a "CD4 count return to normal" (these are the famous "helper" T-cells). BB seemed confident. We shall see.
* My immune system will "remember" previously acquired immunities. This is a big relief to me. No reimmunization is required.
* The fact that I got shingles once does not increase the likelihood that I will get it again. It is 98% gone now, by the way, and there looks to be no residual pain. BB asked why I was not immediately put on IV Acyclovir, which is consistent with his aggressive nature. By comparison, my primary care physician said that would never happen unless severe complications occurred.
* During flu season, I should NOT be vaccinated, but I should take Tamiflu instead. This is somewhat at odds with the notion of a fully-recovered immune system...shouldn't I be able to tolerate a live vaccine if that's the case? Maybe this is somewhere down the line.
I'll ask SF about this if I see him when I do the consult on the portacath, and will also ask GD about this when I see him in a couple of weeks for maintenance. I may even ask Kathy G about it when I see her next week for breakfast.
Thursday, September 17, 2009
The Big "Catch Up" Blog
Okay, at long last back in Los Angeles and with enough energy to type. Catch-up time!
We arrived in Little Rock on Sunday evening. It was a strange homecoming – I suppose I’ve become reacquainted with home, having been in Los Angeles for several weeks now, and the culture shock was palpable. No restaurants open on Sunday night, the “fancy hotel” in town not having movies on demand or a minibar or room service after 9PM, etc.
Monday was very busy indeed. We saw our friends Jan and Bruce who came to Little Rock as we were finishing up back in July, and I saw that they knew many new faces whom I did not – the torch is therefore passed to a new generation of MM warriors. :) I had seven or eight tubes drawn out of my arm (I’m actually more or less relieved at this point that accessing the portacath is done sparingly). Then off to meet with the nurse.
I've become downright insistent on certain aspects of managing my care. I opted out of gene arrays (deep bone marrows) and since we weren't going to have the results of the PET scan back, I refused the fine needle aspirations. They wouldn't even know what they were looking for, or where they were looking for it! And since the last FNA came back with no abnormal cells, and I *subsequently* achieved complete remission (according to GD here in Los Angeles), I figured they didn't really need it.
I also opted out of contrast in the MRI, both because they only use it for MRIs of the brain which had been normal (my wife might debate the accuracy of these tests) since day one, and because the damn portacath makes me skittish. Nonetheless, I spent a good two hours in the ol' tube, with ear-shattering banging going on. Good thing I'm not claustrophobic, but GOD is it boring. I've learned that when one is sick, one steels oneself for all this stuff. With no disease, the MRI seemed more of a chore. I also had to re-read the loooooong list of Velcade side effects again, and it has a distinctly different flavor to somebody in remission.
Before remission: "Does this list include dying of cancer? No? Okay, I'll take it."
After remission: "Uhhh....I REALLY don't want any of this stuff to happen to me."
Suffice to say, Velcade is a pretty nasty drug, but I don't think it's as nasty as the stuff I've been on, so ahead we go.
After the MRI, I had a PET scan, and this time they DID need to access the port for the isotope infusion. I told them I wanted them to use the portacath, so they called a nurse who was skilled in accessing it. Note to self: next time, tell them ahead of time. Anyhow, she accessed it alright...and it HURT. It wasn't pure agony because she accessed the less painful of the two, but it hurt a hell of a lot worse than a stick in the arm and I was once again left wondering why I have this damn thing.
On that topic, SF at City of Hope has to be one of the nicest, most caring, most conscientious and wonderful doctors in the world. But the staff at City of Hope leaves a little something to be desired. I had told his office that I wanted a consult to discuss potentially removing the portacath and replacing it with a single-lumen, or maybe removing it altogether. And they scheduled me (without checking my availability) for surgery this past Wednesday -- which obviously didn't work out so well since I was in Arkansas. I found out about this on Monday and was able to correct it, but the sheer number of clerical errors there is staggering. I thought back to the infamous "blood pressure" conversations during my initial consult back there last November / December...it seems they haven't improved.
Monday night I had a nice dinner with Jill, and then Tuesday I showed up for the bone marrow. The PET folks left the IV in the portacath (once it was in, it actually was not uncomfortable like an arm IV is...it was just the initial placement that hurt) so that was a pretty quick procedure. And then Tuesday night we met up with our friends Jan, Bruce and Lori for a wonderful dinner...followed by far too many drinks with BJ, BB's long-time assistant. We closed the restaurant down and I was feeling it until about 6PM the next day!!!
On Wednesday, we met with BB. He confirmed that I am in "very profound complete remission." No M-protein in the blood or urine under the most sensitive tests, totally normal bone marrow, no active focal lesions (though I still have over 100 small ones that are filling in slowly), and "multiple indistinct kappa bands" under immunofixation which is the hallmark, BB says, of profound remission.
However, the sub-type of my disease, as I have noted elsewhere, is pretty unfavorable. So I can't quite be fully confident yet -- with a less aggressive sub-type I might be able to say there's a 95% chance I've been cured, but as it stands now the numbers are more like 70%. Still, I'll take 70%!!
Unfortunately, the treatment is not without some side effects. I had thought I'd made it through relatively unscathed except for muscle atrophy and vision issues (potentially cataracts). But the PET scan revealed "mild calcification of the coronary arteries" and an enlarged prostate. Great. I've beaten cancer only to die of a heart-attack while peeing in my pants.
BB, of course, wasn't alarmed by either of these things. For the prostate, he simply said I must have a large gland before cackling and winking at Jill. I appreciate the compliment but I'd rather learn about the potential medical implications of the chemo side effects. For this, I suppose I will have to go back to my primary care guy PZ. On the plus side, after everything I've gone through, a simple finger-up-the-butt-test no longer holds the abject horror that it used to.
As for the heart calcification, he was a bit more serious. And then non-chalantly suggested I lose 40 pounds.
Now, people, when I left the hospital back in March, I looked like I'd just been liberated by Ike and the boys and I didn't weigh what he was suggesting!!! I need to lose more like 15 pounds or so -- I'm not even what I'd call pudgy but I have acquired the belly of a 41-year old who works too hard and collects wine, but doesn't live so well as to have contracted gout. We'll see what this does for me. I have also been cleared to go back on Lipitor, despite what the crazy man in Canada said about it causing my cancer in the first place.
Given my aggressive subtype of the disease (within the overall "low risk" category, still), BB wants to go a little heavier on maintenance with me than with most people, prescribing 1.3 mg/m2 of Velcade weekly rather than 1.0 mg, but he's going to wait until the protocol is revised. In the meantime, starting on 9/29, I'll get Velcade weekly, Revlimid every day (15mg) for 21 days out of each 28 day cycle, and 20mg of dex on the Velcade days. In addition, he wants to see all the osteolytic lesions close up since the notion is the cells could reactivate if they are still there, and he therefore prescribed Zometa, a bone-strengthener, to be administered via IV once a month. Plus I'm going to get Testosterone injections once a month for energy and general mojo, I suppose.
Quite a recipe.
I'm hoping to return to work in November but he cautioned that I shouldn't plan on jumping back in with both feet -- I need to ease into it. So I'm going to try that one out for size with my boss when I have dinner with him and his wife soon. I'm sure he will be supportive.
My next appointment in Little Rock is in late January -- hopefully by that time, all the lesions will have filled back in with bone and I will remain in deep CR, which should make us both feel better about long-term prospects.
Other than being stranded in Little Rock for one more day due to a mechanical problem with a plane and then bad weather in Arkansas and Atlanta, that's about all there is to report for now. I'll be visiting City of Hope to check out this stupid portacath soon, and of course there is my upcoming breakfast meeting with Kathy Giusti of the MMRF which I'm looking forward to, so there will be news in the coming days.
Thanks again to all of you for your support, prayers and positivity!
We arrived in Little Rock on Sunday evening. It was a strange homecoming – I suppose I’ve become reacquainted with home, having been in Los Angeles for several weeks now, and the culture shock was palpable. No restaurants open on Sunday night, the “fancy hotel” in town not having movies on demand or a minibar or room service after 9PM, etc.
Monday was very busy indeed. We saw our friends Jan and Bruce who came to Little Rock as we were finishing up back in July, and I saw that they knew many new faces whom I did not – the torch is therefore passed to a new generation of MM warriors. :) I had seven or eight tubes drawn out of my arm (I’m actually more or less relieved at this point that accessing the portacath is done sparingly). Then off to meet with the nurse.
I've become downright insistent on certain aspects of managing my care. I opted out of gene arrays (deep bone marrows) and since we weren't going to have the results of the PET scan back, I refused the fine needle aspirations. They wouldn't even know what they were looking for, or where they were looking for it! And since the last FNA came back with no abnormal cells, and I *subsequently* achieved complete remission (according to GD here in Los Angeles), I figured they didn't really need it.
I also opted out of contrast in the MRI, both because they only use it for MRIs of the brain which had been normal (my wife might debate the accuracy of these tests) since day one, and because the damn portacath makes me skittish. Nonetheless, I spent a good two hours in the ol' tube, with ear-shattering banging going on. Good thing I'm not claustrophobic, but GOD is it boring. I've learned that when one is sick, one steels oneself for all this stuff. With no disease, the MRI seemed more of a chore. I also had to re-read the loooooong list of Velcade side effects again, and it has a distinctly different flavor to somebody in remission.
Before remission: "Does this list include dying of cancer? No? Okay, I'll take it."
After remission: "Uhhh....I REALLY don't want any of this stuff to happen to me."
Suffice to say, Velcade is a pretty nasty drug, but I don't think it's as nasty as the stuff I've been on, so ahead we go.
After the MRI, I had a PET scan, and this time they DID need to access the port for the isotope infusion. I told them I wanted them to use the portacath, so they called a nurse who was skilled in accessing it. Note to self: next time, tell them ahead of time. Anyhow, she accessed it alright...and it HURT. It wasn't pure agony because she accessed the less painful of the two, but it hurt a hell of a lot worse than a stick in the arm and I was once again left wondering why I have this damn thing.
On that topic, SF at City of Hope has to be one of the nicest, most caring, most conscientious and wonderful doctors in the world. But the staff at City of Hope leaves a little something to be desired. I had told his office that I wanted a consult to discuss potentially removing the portacath and replacing it with a single-lumen, or maybe removing it altogether. And they scheduled me (without checking my availability) for surgery this past Wednesday -- which obviously didn't work out so well since I was in Arkansas. I found out about this on Monday and was able to correct it, but the sheer number of clerical errors there is staggering. I thought back to the infamous "blood pressure" conversations during my initial consult back there last November / December...it seems they haven't improved.
Monday night I had a nice dinner with Jill, and then Tuesday I showed up for the bone marrow. The PET folks left the IV in the portacath (once it was in, it actually was not uncomfortable like an arm IV is...it was just the initial placement that hurt) so that was a pretty quick procedure. And then Tuesday night we met up with our friends Jan, Bruce and Lori for a wonderful dinner...followed by far too many drinks with BJ, BB's long-time assistant. We closed the restaurant down and I was feeling it until about 6PM the next day!!!
On Wednesday, we met with BB. He confirmed that I am in "very profound complete remission." No M-protein in the blood or urine under the most sensitive tests, totally normal bone marrow, no active focal lesions (though I still have over 100 small ones that are filling in slowly), and "multiple indistinct kappa bands" under immunofixation which is the hallmark, BB says, of profound remission.
However, the sub-type of my disease, as I have noted elsewhere, is pretty unfavorable. So I can't quite be fully confident yet -- with a less aggressive sub-type I might be able to say there's a 95% chance I've been cured, but as it stands now the numbers are more like 70%. Still, I'll take 70%!!
Unfortunately, the treatment is not without some side effects. I had thought I'd made it through relatively unscathed except for muscle atrophy and vision issues (potentially cataracts). But the PET scan revealed "mild calcification of the coronary arteries" and an enlarged prostate. Great. I've beaten cancer only to die of a heart-attack while peeing in my pants.
BB, of course, wasn't alarmed by either of these things. For the prostate, he simply said I must have a large gland before cackling and winking at Jill. I appreciate the compliment but I'd rather learn about the potential medical implications of the chemo side effects. For this, I suppose I will have to go back to my primary care guy PZ. On the plus side, after everything I've gone through, a simple finger-up-the-butt-test no longer holds the abject horror that it used to.
As for the heart calcification, he was a bit more serious. And then non-chalantly suggested I lose 40 pounds.
Now, people, when I left the hospital back in March, I looked like I'd just been liberated by Ike and the boys and I didn't weigh what he was suggesting!!! I need to lose more like 15 pounds or so -- I'm not even what I'd call pudgy but I have acquired the belly of a 41-year old who works too hard and collects wine, but doesn't live so well as to have contracted gout. We'll see what this does for me. I have also been cleared to go back on Lipitor, despite what the crazy man in Canada said about it causing my cancer in the first place.
Given my aggressive subtype of the disease (within the overall "low risk" category, still), BB wants to go a little heavier on maintenance with me than with most people, prescribing 1.3 mg/m2 of Velcade weekly rather than 1.0 mg, but he's going to wait until the protocol is revised. In the meantime, starting on 9/29, I'll get Velcade weekly, Revlimid every day (15mg) for 21 days out of each 28 day cycle, and 20mg of dex on the Velcade days. In addition, he wants to see all the osteolytic lesions close up since the notion is the cells could reactivate if they are still there, and he therefore prescribed Zometa, a bone-strengthener, to be administered via IV once a month. Plus I'm going to get Testosterone injections once a month for energy and general mojo, I suppose.
Quite a recipe.
I'm hoping to return to work in November but he cautioned that I shouldn't plan on jumping back in with both feet -- I need to ease into it. So I'm going to try that one out for size with my boss when I have dinner with him and his wife soon. I'm sure he will be supportive.
My next appointment in Little Rock is in late January -- hopefully by that time, all the lesions will have filled back in with bone and I will remain in deep CR, which should make us both feel better about long-term prospects.
Other than being stranded in Little Rock for one more day due to a mechanical problem with a plane and then bad weather in Arkansas and Atlanta, that's about all there is to report for now. I'll be visiting City of Hope to check out this stupid portacath soon, and of course there is my upcoming breakfast meeting with Kathy Giusti of the MMRF which I'm looking forward to, so there will be news in the coming days.
Thanks again to all of you for your support, prayers and positivity!
Wednesday, September 16, 2009
Trapped in Little Rock
Folks, I was planning a major blog update but I'm just exhausted. Our flight was delayed for four hours due to mechanical issues and then weather, so our connecting flight would have been missed and we'd have been stranded in Atlanta. Instead, we decided just to stay another night in Little Rock. But it was a bit of a stressful afternoon and evening, so I'll provide the big update tomorrow.
I will say that BB declared that I am in "very profound complete remission" which is excellent news, obviously. We have learned, however, that the chemo has damaged some heart tissue and my prostate, neither of which are serious issues (so says BB) but both of which are a little depressing.
Anyhow...much more to come tomorrow!
I will say that BB declared that I am in "very profound complete remission" which is excellent news, obviously. We have learned, however, that the chemo has damaged some heart tissue and my prostate, neither of which are serious issues (so says BB) but both of which are a little depressing.
Anyhow...much more to come tomorrow!
Tuesday, September 8, 2009
COMPLETE REMISSION
Just back from GD's office.
SPEP analysis of blood: "No evidence of monoclonal protein."
Immunofixation: "No monoclonal protein."
Light-chain analysis of urine: "All protein is albumin with no globulin."
That, my friends, is complete remission.
I am waiting to hear these words from BB's mouth after he sees all this plus the PET and MRI before I throw a huge party, but that's not going to stop me from having one hell of a great bottle of wine this evening.
The road is far from over but the worst is behind me, I believe -- how nice it is to say that, as opposed to "well, let's just see how long this lasts" which is the best I would have if I'd gone for treatment other than Total Therapy.
THANK YOU, all of you, for your love, kindness, support, encouragement, prayers, positive thoughts, and help. You have all been so important to my getting this far.
I will report back from Arkansas in about eight days. Until then, my friends, be well!!!
SPEP analysis of blood: "No evidence of monoclonal protein."
Immunofixation: "No monoclonal protein."
Light-chain analysis of urine: "All protein is albumin with no globulin."
That, my friends, is complete remission.
I am waiting to hear these words from BB's mouth after he sees all this plus the PET and MRI before I throw a huge party, but that's not going to stop me from having one hell of a great bottle of wine this evening.
The road is far from over but the worst is behind me, I believe -- how nice it is to say that, as opposed to "well, let's just see how long this lasts" which is the best I would have if I'd gone for treatment other than Total Therapy.
THANK YOU, all of you, for your love, kindness, support, encouragement, prayers, positive thoughts, and help. You have all been so important to my getting this far.
I will report back from Arkansas in about eight days. Until then, my friends, be well!!!
Monday, September 7, 2009
An insomniac's thoughts on the Indian subcontinent
Can't sleep. Not sure why. Part of it is pain from the shingles, which though getting better is still troublesome. Part of it is wanting to get the results of the blood tests back on Tuesday -- if it's zero, it means I'm almost certainly in complete remission. If it's not, it's a bad thing.
At any rate, can't sleep.
I received an email from a friend of mine with whom I used to work, who now does charitable work for the Gates foundation in India (she is, herself, Indian). It was great to hear from her (hi there, AR, now reading along!)
I also received an email from a fellow MM traveler, also initialed AR oddly enough although she is from Jersey, not Mumbai! :) In our back-and-forth the concept of Valtrex (a vaccine for shingles) as a prophylactic came up. My dear mother, bless her heart, keeps insisting that I get this (it's routine for people over 60) but doesn't quite grasp that it's a live vaccine and my system can't handle it.
Between these two seemingly unrelated contacts, I started thinking about how MM patients that have gone through SCT cannot tolerate live vaccines. The list of live vaccines could include those famous shots that people need before traveling to India or Africa. So I may not be going anywhere all that exotic. I wonder how this might impact my career?
In any case, I think I need to learn more about the whole vaccination thing. When I do my consult at City of Hope for this stupid portacath, I will try to also get in to see Dr. SF to discuss vaccination theory, antibodies in a post SCT immune system, whether I'm really susceptible to everything again, etc.
Always something more to learn -- and that applies much more broadly than MM, of course.
Did I mention that I'm having a breakfast meeting in a couple of weeks with Kathy Giusti of the MMRF? I've spoken with her on the phone in the past, and I'm really looking forward to finally meeting her. I hope to try to give something back by volunteering some time as a board member if they have a use for me. We shall see.
At any rate, can't sleep.
I received an email from a friend of mine with whom I used to work, who now does charitable work for the Gates foundation in India (she is, herself, Indian). It was great to hear from her (hi there, AR, now reading along!)
I also received an email from a fellow MM traveler, also initialed AR oddly enough although she is from Jersey, not Mumbai! :) In our back-and-forth the concept of Valtrex (a vaccine for shingles) as a prophylactic came up. My dear mother, bless her heart, keeps insisting that I get this (it's routine for people over 60) but doesn't quite grasp that it's a live vaccine and my system can't handle it.
Between these two seemingly unrelated contacts, I started thinking about how MM patients that have gone through SCT cannot tolerate live vaccines. The list of live vaccines could include those famous shots that people need before traveling to India or Africa. So I may not be going anywhere all that exotic. I wonder how this might impact my career?
In any case, I think I need to learn more about the whole vaccination thing. When I do my consult at City of Hope for this stupid portacath, I will try to also get in to see Dr. SF to discuss vaccination theory, antibodies in a post SCT immune system, whether I'm really susceptible to everything again, etc.
Always something more to learn -- and that applies much more broadly than MM, of course.
Did I mention that I'm having a breakfast meeting in a couple of weeks with Kathy Giusti of the MMRF? I've spoken with her on the phone in the past, and I'm really looking forward to finally meeting her. I hope to try to give something back by volunteering some time as a board member if they have a use for me. We shall see.
Saturday, September 5, 2009
Shingles and cataracts...
Hello all -- hope you are enjoying your weekend. Just a quick update.
The pain from the shingles is still there, but it appears to be improving ever so slightly. I didn't need Vicodin yesterday or this morning. Hopefully that bodes well for the pain going away when the shingles do, rather than lingering forever.
I contacted doctor SF at City of Hope about the portacath because rather than seeing a general surgeon for it, I thought a cancer center that is used to placing and accessing these things thousands of times would be the best way to go. His office is setting up a consult, but I won't be able to do anything about the portacath until after my followup in Little Rock on the 14th-16th of this month. I honestly don't know if I want them using the portacath versus just sticking stuff in my arms. The left side of the portacath doesn't hurt any longer, but the right side is sensitive to the touch. It's not infected -- there's no redness or anything like that, I have no fever or other signs of infection, and I've had a doctor and three nurses look at it to make sure. It's something going on with the placement.
Lastly, I had mentioned before that the dex impacted my vision. It more or less rebounded when I went off the dex, but I do feel there could be some mild lingering affect. Right now, for example, my visual acuity isn't that great. Dr. GD told me Dex causes cataracts (yet another issue with that horrible drug). I need to make an appointment with an opthomologist to get that checked out. I also called GD's office yesterday to get the SPEP information (M-spike data) from my blood work last week, but he was gone and they won't let the lab technician give me results over the phone. So I have to wait until Tuesday to find out. Hopefully it will be absolutely zero this time -- it will be a big reading, for sure. If it's gone, then I'm in complete remission and I'll hopefully have favorable progress on the bones being repaired when I get the PET and MRI in ten days. If it's back, then I either haven't achieved remission, or worse yet I've achieved it and lost it -- I don't want to think about those consequences because I think they are exceedingly unlikely.
Be well, all of you!
The pain from the shingles is still there, but it appears to be improving ever so slightly. I didn't need Vicodin yesterday or this morning. Hopefully that bodes well for the pain going away when the shingles do, rather than lingering forever.
I contacted doctor SF at City of Hope about the portacath because rather than seeing a general surgeon for it, I thought a cancer center that is used to placing and accessing these things thousands of times would be the best way to go. His office is setting up a consult, but I won't be able to do anything about the portacath until after my followup in Little Rock on the 14th-16th of this month. I honestly don't know if I want them using the portacath versus just sticking stuff in my arms. The left side of the portacath doesn't hurt any longer, but the right side is sensitive to the touch. It's not infected -- there's no redness or anything like that, I have no fever or other signs of infection, and I've had a doctor and three nurses look at it to make sure. It's something going on with the placement.
Lastly, I had mentioned before that the dex impacted my vision. It more or less rebounded when I went off the dex, but I do feel there could be some mild lingering affect. Right now, for example, my visual acuity isn't that great. Dr. GD told me Dex causes cataracts (yet another issue with that horrible drug). I need to make an appointment with an opthomologist to get that checked out. I also called GD's office yesterday to get the SPEP information (M-spike data) from my blood work last week, but he was gone and they won't let the lab technician give me results over the phone. So I have to wait until Tuesday to find out. Hopefully it will be absolutely zero this time -- it will be a big reading, for sure. If it's gone, then I'm in complete remission and I'll hopefully have favorable progress on the bones being repaired when I get the PET and MRI in ten days. If it's back, then I either haven't achieved remission, or worse yet I've achieved it and lost it -- I don't want to think about those consequences because I think they are exceedingly unlikely.
Be well, all of you!
Wednesday, September 2, 2009
New lab results (no M-protein data yet), and portacath update, etc.
I went back to Dr. GD's office, carrying my jug of urine this time, so they could draw two more vials of blood that must be assessed at the same time as the small cup of urine (not to be confused with the big jug) that I'll be sending back to Arkansas.
I got my initial labs back from two days ago. Some curious things.
1. White counts are lower than I expected at 4.0. This is a little troubling -- I'd have thought they would be higher, especially given the shingles. They aren't wildly low, but given that Revlimid is supposed to suppress blood counts and I'm going to be on that for the next three years, I wouldn't want my immune system unable to respond to an infection.
2. RDW -- the variability in the width of red blood cells -- is high again. This seems like a meaningless figure except that one nurse several months ago said it was "high in people with cancer" and it had finally normalized before I left Arkansas. I'm going to chalk it up to red blood cells still growing, maybe. I dunno. Something to ask BB about, perhaps.
3. Uric Acid is a little high at 8.3 (normal is 3.6-7.7) and Creatinine is at 1.0, still very healthy but higher than what I've been running. I think this means the acyclovir could be working my kidneys pretty hard and I need to drink more water.
4. I have a high number of monocytes -- a type of which blood cell -- and I have "atypical lymphs" which don't sound good. It's a test I have not seen done in Arkansas.
In other news, platelets are normal at 185, liver function is mostly normal except for ALT which is midly elevated. Total protein is 6.3 and Albumin is 4.0, which means immunoglobulin is 2.3. Not too bad -- hopefully there's no room for M-protein within that number. I should find out on Friday or Monday at the latest.
They didn't even try to access the portacath today. I spoke with a nurse about it because TWO DAYS LATER it still hurts. From her poking and prodding, I can say that the area above (towards my head) of the placement is okay, but beneath it is VERY tender and painful to the touch. The nurse said she had a couple of patients in the past who found the portacath unbearable to use. One of them had it removed and a new one installed and had no problem with the new one.
Great.
I'm going to explore that option now, since this is far too painful to use.
Shingles still there, still hurt like hell.
Don't get Multiple Myeloma, people.
I got my initial labs back from two days ago. Some curious things.
1. White counts are lower than I expected at 4.0. This is a little troubling -- I'd have thought they would be higher, especially given the shingles. They aren't wildly low, but given that Revlimid is supposed to suppress blood counts and I'm going to be on that for the next three years, I wouldn't want my immune system unable to respond to an infection.
2. RDW -- the variability in the width of red blood cells -- is high again. This seems like a meaningless figure except that one nurse several months ago said it was "high in people with cancer" and it had finally normalized before I left Arkansas. I'm going to chalk it up to red blood cells still growing, maybe. I dunno. Something to ask BB about, perhaps.
3. Uric Acid is a little high at 8.3 (normal is 3.6-7.7) and Creatinine is at 1.0, still very healthy but higher than what I've been running. I think this means the acyclovir could be working my kidneys pretty hard and I need to drink more water.
4. I have a high number of monocytes -- a type of which blood cell -- and I have "atypical lymphs" which don't sound good. It's a test I have not seen done in Arkansas.
In other news, platelets are normal at 185, liver function is mostly normal except for ALT which is midly elevated. Total protein is 6.3 and Albumin is 4.0, which means immunoglobulin is 2.3. Not too bad -- hopefully there's no room for M-protein within that number. I should find out on Friday or Monday at the latest.
They didn't even try to access the portacath today. I spoke with a nurse about it because TWO DAYS LATER it still hurts. From her poking and prodding, I can say that the area above (towards my head) of the placement is okay, but beneath it is VERY tender and painful to the touch. The nurse said she had a couple of patients in the past who found the portacath unbearable to use. One of them had it removed and a new one installed and had no problem with the new one.
Great.
I'm going to explore that option now, since this is far too painful to use.
Shingles still there, still hurt like hell.
Don't get Multiple Myeloma, people.
Monday, August 31, 2009
Post rated R for adult language -- skip this one if you are offended easily
I'm apologizing in advance for this rant because I know I have some genteel readers, including my in-laws. But I want to record my feelings as authentically as possible, and this post requires some naughty words. If you are offended by bad language, please skip this post and accept my apologies.
__________
Today was a shitty day. There's no other word for it.
I woke up to the news that my employer concluded a multibillion dollar deal to which I had devoted many long days and nights of work before I got sick. It's a good thing for the company, but I missed out on closing the deal, which means I'll get none of the credit for it, and which means I'll get no bonus for its completion (this might have been, say, 20% of my compensation for the year).
And it just gets worse from there.
The shingles hurt. A lot. There's some discussion that it may be post-herpetic neuralgia, which is fancy-talk for IT'S GOING TO HURT FOREVER. Meaning after the shingles have gone, the nerves have been damaged enough that they will hurt FOREVER. We don't know this for certain yet.
Then I found out that as a result of my disease and the wear and tear on my back, I've lost about an inch-and-a-half of height. This might not seem like a huge deal to those of you who are tall, but I was a little over 5'8 when I started this journey and now I'm under 5'7, which is really a bummer. It also has contributed to my belly being larger -- the height is all out of my trunk so whatever organs, fat, and other tissue was there to begin with is now crowded into a smaller space. I'm not happy about that.
This might explain why I had trouble hitting the golf ball the other day...my clubs basically don't fit me any more. But turns out that's not a big problem since my doctor today (GD, whom I will be seeing for maintenance therapy here in Los Angeles for the next three years) told me I probably shouldn't plan on hitting for distance and need to "take it easy" while playing golf for the NEXT THREE YEARS while I've got this fucking portacath in me.
Which brings me to my next, and final, use of profanity. They accessed the portacath today and it HURT LIKE A MOTHERFUCKER. I haven't been in that much pain from ANYTHING this entire time, including the fine needle aspiration without the anaesthesia. They first used a freezing spray to numb the area. This hurt pretty bad. I was surprised they needed to do it because I thought it wasn't supposed to hurt. Little did I know.
When the pushed the needle through, it hurt significantly worse than a normal needle stick. It hurt at the site, like a normal puncture, and it hurt subcutaneously, like a bad bruise at the same time. That was in the first of the two lumens...which was easy enough to access.
The second one was not easy to access. They thought it might be clotted.
Long story short it hurt enough where I almost cried right there. And mind you, I had taken a Vicodin (because of the shingles pain) just before I went to the doctor, so it was probably fully working as they did this.
On the old "how bad is your pain, 1 to 10" scale, I would have ranked the 10 seconds where they accessed that lumen as a 9. That's as bad as the broken back felt, as bad as the abdominal pain that required Dilaudid, and as bad or worse than when they did the needle aspiration without the proper anesthesia.
And I HAVE TO DO THIS EVERY DAMN WEEK FOR THE NEXT THREE YEARS???
No effing way.
I'm not going to allow BB or his people to do anything requiring access to the lumens that isn't ABSOLUTELY NECESSARY. That means no more contrast in the MRIs. They don't need to look at my brain function. It's fine. They've looked at it in the past and it's fine. They want the brain MRI with contrast? Too damn bad.
I may have this removed. It hurt FAR more than simply having an IV put in. The only reason I'm not definitively having it taken out immediately is that I think it *might* still hurt from being surgically installed in the first place. I asked the doctor about this when we left, saying "well, it probably won't hurt like this every time, right?" and he sheepishly shook his head and said "well...this is probably what it's going to feel like, yes."
Great. That's just effing great.
I have to go back in two days to have more blood work done because they want it done at the same time as a 24-hour urine collection, so we'll see how that feels.
Today is the first time in a long, long time that I am furious that I got this stupid disease. It's the first time that the elusive "quality of life" issue got in the way.
I know that the most important thing is that the disease is gone. And I hope and pray that when we get the SPEP data back in a few days, that's what it will show. But right now, all I can think of is the pain, discomfort, humility and life-changes that are in store for me. It's been more than an hour since they accessed the lumen AND IT STILL EFFING HURTS!!!
__________
Today was a shitty day. There's no other word for it.
I woke up to the news that my employer concluded a multibillion dollar deal to which I had devoted many long days and nights of work before I got sick. It's a good thing for the company, but I missed out on closing the deal, which means I'll get none of the credit for it, and which means I'll get no bonus for its completion (this might have been, say, 20% of my compensation for the year).
And it just gets worse from there.
The shingles hurt. A lot. There's some discussion that it may be post-herpetic neuralgia, which is fancy-talk for IT'S GOING TO HURT FOREVER. Meaning after the shingles have gone, the nerves have been damaged enough that they will hurt FOREVER. We don't know this for certain yet.
Then I found out that as a result of my disease and the wear and tear on my back, I've lost about an inch-and-a-half of height. This might not seem like a huge deal to those of you who are tall, but I was a little over 5'8 when I started this journey and now I'm under 5'7, which is really a bummer. It also has contributed to my belly being larger -- the height is all out of my trunk so whatever organs, fat, and other tissue was there to begin with is now crowded into a smaller space. I'm not happy about that.
This might explain why I had trouble hitting the golf ball the other day...my clubs basically don't fit me any more. But turns out that's not a big problem since my doctor today (GD, whom I will be seeing for maintenance therapy here in Los Angeles for the next three years) told me I probably shouldn't plan on hitting for distance and need to "take it easy" while playing golf for the NEXT THREE YEARS while I've got this fucking portacath in me.
Which brings me to my next, and final, use of profanity. They accessed the portacath today and it HURT LIKE A MOTHERFUCKER. I haven't been in that much pain from ANYTHING this entire time, including the fine needle aspiration without the anaesthesia. They first used a freezing spray to numb the area. This hurt pretty bad. I was surprised they needed to do it because I thought it wasn't supposed to hurt. Little did I know.
When the pushed the needle through, it hurt significantly worse than a normal needle stick. It hurt at the site, like a normal puncture, and it hurt subcutaneously, like a bad bruise at the same time. That was in the first of the two lumens...which was easy enough to access.
The second one was not easy to access. They thought it might be clotted.
Long story short it hurt enough where I almost cried right there. And mind you, I had taken a Vicodin (because of the shingles pain) just before I went to the doctor, so it was probably fully working as they did this.
On the old "how bad is your pain, 1 to 10" scale, I would have ranked the 10 seconds where they accessed that lumen as a 9. That's as bad as the broken back felt, as bad as the abdominal pain that required Dilaudid, and as bad or worse than when they did the needle aspiration without the proper anesthesia.
And I HAVE TO DO THIS EVERY DAMN WEEK FOR THE NEXT THREE YEARS???
No effing way.
I'm not going to allow BB or his people to do anything requiring access to the lumens that isn't ABSOLUTELY NECESSARY. That means no more contrast in the MRIs. They don't need to look at my brain function. It's fine. They've looked at it in the past and it's fine. They want the brain MRI with contrast? Too damn bad.
I may have this removed. It hurt FAR more than simply having an IV put in. The only reason I'm not definitively having it taken out immediately is that I think it *might* still hurt from being surgically installed in the first place. I asked the doctor about this when we left, saying "well, it probably won't hurt like this every time, right?" and he sheepishly shook his head and said "well...this is probably what it's going to feel like, yes."
Great. That's just effing great.
I have to go back in two days to have more blood work done because they want it done at the same time as a 24-hour urine collection, so we'll see how that feels.
Today is the first time in a long, long time that I am furious that I got this stupid disease. It's the first time that the elusive "quality of life" issue got in the way.
I know that the most important thing is that the disease is gone. And I hope and pray that when we get the SPEP data back in a few days, that's what it will show. But right now, all I can think of is the pain, discomfort, humility and life-changes that are in store for me. It's been more than an hour since they accessed the lumen AND IT STILL EFFING HURTS!!!
Wednesday, August 26, 2009
Something beautiful...
I've been waiting to post this. My shingles still hurt, although they aren't getting worse. I'm still tired, my shoulder hurts, yadda yadda. I'm getting blood work done next Monday with Dr. GD, here in Los Angeles, who knows both BB and SF well and who will be my primary maintenance therapy guy.
That, of course, wasn't the meat of the post -- I just figured I should provide an update.
No, the meat of the post is found on a scrap of paper that has been in my wallet since March.
I mentioned very early on that I hired a company called PinnacleCare to be a "health care advocate" for me. Essentially they have a team of nurses, doctors and researchers that do everything from attend appointments to schedule appointment to move medical records back and forth to do research, etc. They've been very helpful with all that, and they continue to assist me.
However the most meaningful thing they did was something I didn't hire them for.
When I was in the hospital in March, much sicker than I realized and ultimately with four broken vertebrae in my back, I received a care package from them. Among the articles was a T-shirt ("Cancer Sucks", it reads), some inspirational and humorous little books, some candy, etc. I also received a CD of soothing music with a note from one of the PinnacleCare people that said her son used to listen to that CD when he was undergoing treatment for leukemia. Her son is now 13, healthy, and dreams of one day being an oncologist.
Beautiful stuff, right?
But the most beautiful thing of all is on this scrap of paper.
When it was sent to me, I was really out of it on Dilaudid. I don't even really recall putting it in my wallet, and I only barely remember reading it when I originally received it. In fact, I'm only guessing it was from PinnacleCare -- it could have come from a nurse in the clinic. In any case, I read it and folded it up, and put it in my wallet, and forgot about it until recently, when I found it again.
It's handwritten, and it looks like it was written by a young girl, probably a few years older than Parker but no more than 12 or 13. Typing it in here now, it moves me to tears.
There are two poems and a note, handwritten.
A WORD
A word can be
Strong
Powerful or
Hurtful.
The word cancer rings in my ears.
A word, a word, who would of [sic] thought,
the word cancer could be so
devastating to hear, but me and my
family.
Cancer, a word I thought never would
happen in my life.
But it did
Cancer, a word so powerful, harmful and sad.
But I can overcome the word cancer.
I am strong.
I am stronger than that one word.
So is my dad.
I am strong for my dad.
He will overcome that word.
Cancer, just a word.
Well...I'm sobbing now. I don't know who wrote this, or how it was passed to me, but I know I will treasure it above almost everything else I have. I shall fold it up dutifully, and return it to my wallet for the time being, until I can find a better place for it.
Thank you, whomever wrote this, and whomever sent it to me...and God bless you and your family, wherever you are.
That, of course, wasn't the meat of the post -- I just figured I should provide an update.
No, the meat of the post is found on a scrap of paper that has been in my wallet since March.
I mentioned very early on that I hired a company called PinnacleCare to be a "health care advocate" for me. Essentially they have a team of nurses, doctors and researchers that do everything from attend appointments to schedule appointment to move medical records back and forth to do research, etc. They've been very helpful with all that, and they continue to assist me.
However the most meaningful thing they did was something I didn't hire them for.
When I was in the hospital in March, much sicker than I realized and ultimately with four broken vertebrae in my back, I received a care package from them. Among the articles was a T-shirt ("Cancer Sucks", it reads), some inspirational and humorous little books, some candy, etc. I also received a CD of soothing music with a note from one of the PinnacleCare people that said her son used to listen to that CD when he was undergoing treatment for leukemia. Her son is now 13, healthy, and dreams of one day being an oncologist.
Beautiful stuff, right?
But the most beautiful thing of all is on this scrap of paper.
When it was sent to me, I was really out of it on Dilaudid. I don't even really recall putting it in my wallet, and I only barely remember reading it when I originally received it. In fact, I'm only guessing it was from PinnacleCare -- it could have come from a nurse in the clinic. In any case, I read it and folded it up, and put it in my wallet, and forgot about it until recently, when I found it again.
It's handwritten, and it looks like it was written by a young girl, probably a few years older than Parker but no more than 12 or 13. Typing it in here now, it moves me to tears.
There are two poems and a note, handwritten.
A WORD
A word can be
Strong
Powerful or
Hurtful.
The word cancer rings in my ears.
A word, a word, who would of [sic] thought,
the word cancer could be so
devastating to hear, but me and my
family.
Cancer, a word I thought never would
happen in my life.
But it did
Cancer, a word so powerful, harmful and sad.
But I can overcome the word cancer.
I am strong.
I am stronger than that one word.
So is my dad.
I am strong for my dad.
He will overcome that word.
Cancer, just a word.
Well...I'm sobbing now. I don't know who wrote this, or how it was passed to me, but I know I will treasure it above almost everything else I have. I shall fold it up dutifully, and return it to my wallet for the time being, until I can find a better place for it.
Thank you, whomever wrote this, and whomever sent it to me...and God bless you and your family, wherever you are.
Wednesday, August 19, 2009
Shingles and portacath update
Because there's not much else to write about.
I wound up keeping my appointment with my primary care physician, PZ, for this past Monday AM. He is one of the leading infectious disease doctors in the US (I started going to him long before this specialty) and I almost felt good seeing him about something other than strep throat. I always feel like I am cheating him. I also usually feel a little worried that everybody else in the waiting room has stage four schistosomiasis or ebola.
I didn't get either of these while there, but I did get a quick confirmation that it was, indeed, shingles, and quick confirmation that the therapy (4000 mg of Acyclovir) is appropriate. Then I got an explanation of what shingles is, why it is localized, what to look out for, etc. Fairly interesting, actually. Shingles is a re-activation of the chicken pox virus and it starts with a single nerve root and spreads only to the part of the skin that ties back to that one nerve. This is why it appears on a swath of skin rather than all over the body.
Anyhow, I itch and hurt (a dull pain, like a bad bruise) but it's not getting any worse at this point, so hopefully it's contained and will soon begin to abate. It's not the worst thing in the world but I certainly hope I don't get it again -- it's very difficult to sleep, between the itch and the pain.
When then doctor was examining me, he looked at the scar on my chest and said "is that the portacath?" "Yes," I said. "Does this look...right...to you?" He said "Honestly...I've seen better." Knowing PZ as I do, this is tantamount to a less kind person saying "this looks totally horrible." He said the key is to see what it looks like after a month. It will be three weeks tomorrow, and it is still causing me pain at night and is swollen, though not nearly as much.
I continue to refuse to have bloodwork done until it can be done from this stupid thing, but my righteous indignation is beginning to give way to a desire (mostly on the part of Jill) to have current bloodwork. I will probably go in next week to have labs done, whether they can use the portacath or not.
I have my next series of tests scheduled back in Little Rock on Monday, September 14th through the 16th. Hopefully, the result of these tests will be a formal declaration of complete remission from BB and instructions to commence my three years of maintenance therapy. We are running into a little trouble scheduling the fine needle aspirations. I want this done under conscious sedation, and as usual the one scheduler there isn't as aligned with the plan as I'd like. My retort is simply that I won't do any FNAs if she can't get it scheduled under conscious sedation. My marrow was disease-free BEFORE the last round of chemo, and it will certainly be disease free now. There's no point in the FNA except to gather data, and I'm not going to undergo a lot of pain in order to do something just for the sake of data if there is no therapeutic value to me. I have provided a LOT of data before, and they gather data from my bone marrow every time they draw it. The cells drawn from the FNA sites were no different last time than the cells drawn from elsewhere in the marrow.
Still tired, but other than that, and the shingles, I feel pretty good. I am itching (haha) to start some kind of exercise to recover some lost muscle tone and shed the extra fat but the shingles, and to a lesser degree the discomfort of the portacath, are making this difficult. Hopefully in a week or so I can begin.
I wound up keeping my appointment with my primary care physician, PZ, for this past Monday AM. He is one of the leading infectious disease doctors in the US (I started going to him long before this specialty) and I almost felt good seeing him about something other than strep throat. I always feel like I am cheating him. I also usually feel a little worried that everybody else in the waiting room has stage four schistosomiasis or ebola.
I didn't get either of these while there, but I did get a quick confirmation that it was, indeed, shingles, and quick confirmation that the therapy (4000 mg of Acyclovir) is appropriate. Then I got an explanation of what shingles is, why it is localized, what to look out for, etc. Fairly interesting, actually. Shingles is a re-activation of the chicken pox virus and it starts with a single nerve root and spreads only to the part of the skin that ties back to that one nerve. This is why it appears on a swath of skin rather than all over the body.
Anyhow, I itch and hurt (a dull pain, like a bad bruise) but it's not getting any worse at this point, so hopefully it's contained and will soon begin to abate. It's not the worst thing in the world but I certainly hope I don't get it again -- it's very difficult to sleep, between the itch and the pain.
When then doctor was examining me, he looked at the scar on my chest and said "is that the portacath?" "Yes," I said. "Does this look...right...to you?" He said "Honestly...I've seen better." Knowing PZ as I do, this is tantamount to a less kind person saying "this looks totally horrible." He said the key is to see what it looks like after a month. It will be three weeks tomorrow, and it is still causing me pain at night and is swollen, though not nearly as much.
I continue to refuse to have bloodwork done until it can be done from this stupid thing, but my righteous indignation is beginning to give way to a desire (mostly on the part of Jill) to have current bloodwork. I will probably go in next week to have labs done, whether they can use the portacath or not.
I have my next series of tests scheduled back in Little Rock on Monday, September 14th through the 16th. Hopefully, the result of these tests will be a formal declaration of complete remission from BB and instructions to commence my three years of maintenance therapy. We are running into a little trouble scheduling the fine needle aspirations. I want this done under conscious sedation, and as usual the one scheduler there isn't as aligned with the plan as I'd like. My retort is simply that I won't do any FNAs if she can't get it scheduled under conscious sedation. My marrow was disease-free BEFORE the last round of chemo, and it will certainly be disease free now. There's no point in the FNA except to gather data, and I'm not going to undergo a lot of pain in order to do something just for the sake of data if there is no therapeutic value to me. I have provided a LOT of data before, and they gather data from my bone marrow every time they draw it. The cells drawn from the FNA sites were no different last time than the cells drawn from elsewhere in the marrow.
Still tired, but other than that, and the shingles, I feel pretty good. I am itching (haha) to start some kind of exercise to recover some lost muscle tone and shed the extra fat but the shingles, and to a lesser degree the discomfort of the portacath, are making this difficult. Hopefully in a week or so I can begin.
Friday, August 14, 2009
Self diagnosis proves correct
These stupid shingles hurt a great deal.
I called the clinic this morning, and described the situation, and they said that it sounds like shingles. They said to take 1600 mg of Acyclovir (I have been taking 400mg).
An hour later another nurse called and verified this same information and told me I needed to go see my primary care physician on Monday to get a definitive diagnosis, and in the meantime I could start with the 1600mg antiviral meds.
And then BJ called, bless her. She told me that I she had discussed the situation with BB and that it couldn't wait until Monday because very serious complications ("it can be very dangerous" said BJ, and I believe her since my mother's friend got this last year AND WENT BLIND FROM IT) could arise and he wanted to massively increase the dose of antivirals.
I didn't want to go to the ER and wait three hours. We called all our doctor friends that might pop by and have to answer the world's worst question: "does this look infected to you?" At any rate, nobody was home. Finally Jill's brother in law, who is an internal medicine specialist in Texas, helped us out and confirmed visually via the wonders of an iPhone and the Internet that I've got a textbook case.
So BB, it seems, treats shingles the way he treats MM: carpet bombing. I am to take 800mg five times a day for a total of 4000mg daily of Acyclovir. That oughta get rid of these things.
Meanwhile, it's Tylenol for the pain, and keep away from the kids, and keep a shirt on at all times.
Ugh.
Well...like I told my mom and my mother-in-law, this is a small price to pay for getting rid of cancer. I'll deal with it.
Have a good weekend everybody.
I called the clinic this morning, and described the situation, and they said that it sounds like shingles. They said to take 1600 mg of Acyclovir (I have been taking 400mg).
An hour later another nurse called and verified this same information and told me I needed to go see my primary care physician on Monday to get a definitive diagnosis, and in the meantime I could start with the 1600mg antiviral meds.
And then BJ called, bless her. She told me that I she had discussed the situation with BB and that it couldn't wait until Monday because very serious complications ("it can be very dangerous" said BJ, and I believe her since my mother's friend got this last year AND WENT BLIND FROM IT) could arise and he wanted to massively increase the dose of antivirals.
I didn't want to go to the ER and wait three hours. We called all our doctor friends that might pop by and have to answer the world's worst question: "does this look infected to you?" At any rate, nobody was home. Finally Jill's brother in law, who is an internal medicine specialist in Texas, helped us out and confirmed visually via the wonders of an iPhone and the Internet that I've got a textbook case.
So BB, it seems, treats shingles the way he treats MM: carpet bombing. I am to take 800mg five times a day for a total of 4000mg daily of Acyclovir. That oughta get rid of these things.
Meanwhile, it's Tylenol for the pain, and keep away from the kids, and keep a shirt on at all times.
Ugh.
Well...like I told my mom and my mother-in-law, this is a small price to pay for getting rid of cancer. I'll deal with it.
Have a good weekend everybody.
Mostly good news...except the answer to "how am I the same as a ranch-style home's roof?"
I got a call a couple of days ago from a nurse at the clinic just checking up on me. She didn't seem light the brightest bulb, SO I AM TAKING THIS WITH A GRAIN OF SALT but...she did relay good news from the same blood tests that I'd done in my last days at the clinic there a few weeks ago now.
She reviewed with me the level of the M-protein under electrophoresis, which is the "can neither confirm nor deny, Senator" reading. In her words, "as researchers, we would consider this to be zero." Sounds great!!!
I then had the presence of mind to ask about the immunofixation test. More good news. I don't have an actual copy so the words may not be exact but they are pretty close. "There is an indistinct lamba band in the gamma region where the original monoclonal protein was observed -- it cannot be ruled in or out." That, also, sounds like zero or damn close to it.
I am waiting to hear it from BB officially, but collectively this sounds like formal Complete Remission to me.
The swelling is MOSTLY down from this thing implanted in my shoulder but I'm starting to realize a couple of things. First, just because the world's foremost MM specialist works out in the sticks doesn't mean that every doctor there that's not affiliated with his clinic is any good. I may have had general surgery performed on me by a barely-passed-his-exams moron. Hmm. Secondly, this portacath isn't quite as small as I figured. I can feel an outline about 2" by 1.5" that's sitting in me like a thick credit card. The swelling is still too pronounced to know where the little bumps are, so I haven't had blood drawn yet. Next week is my target.
Speaking of little bumps...now to the unfortunate news. Turns out what I thought were spider bites are not, in fact spider bites. Like a roof on a mid-century house, I have shingles. This is not unheard of in people with compromised immune systems. Every day we went into the clinic or the infusion center, there's a sign saying "if you have come into contact with the chicken pox virus, please alert a nurse immediately." This is the reason, really, for the daily Acyclovir -- which I have taken in general but I've missed a couple of days, which I'm now regretting. It's far from certain that it would have prevented it.
Never having had this before, it is pretty painful. I've got it on my left side in a patch about six inches square and it feels like a bad burn. I'm going to call the clinic later today to let them know. My hunch is they will ask me to double up on the Acyclovir and potentially also go on Dex...the latter of which I *really* do not want to do but obviously if that's what they prescribe, then that's what they prescribe.
Otherwise, the only real side effect is exhaustion. I need to get out and exercise but both the surgery on the shoulder, and now the Shingles, will prevent me from doing so for at least another week or two. I tried to swing a golf club the other day, and the good news was that it didn't hurt. The bad news is that out of 40 swings, I missed the ball completely three times, and the rest of the time it went 30-50 yards, barely getting above the ground. I'm by no means a good golfer but this represents a significant decline in the quality of my swing. Not sure what it is, but it will work itself out. I hope resolving the Shingles will be as simple.
I plan to return to the office on November 16th, and start working from home sometime in October, pending how well my physical therapy goes (and, of course, assuming that my visit to the clinic in a few weeks doesn't turn up any unpleasant surprises).
One observation I had: normally, I am a workaholic. I was unemployed, essentially, while waiting out the end of a contract I had for about three months in 2003 and I was going stir crazy. I expected to be climbing the walls missing my job this time around. However with minimal exceptions, I haven't really thought about work. I found this very surprising.
But, interestingly, on the day I more or less realized that I'm in CR or headed there pretty quickly, I had the first rumblings of restlessness. I think subconsciously, I have been very, very focused on my health and have been able to put everything else aside without even really noticing the degree to which I was doing so. As soon as my subconscious accepted the fact that I was not going to die from MM, a switch flipped that allowed me to contemplate my job again. Pretty interesting and probably food for thought for others that are undergoing similar journeys.
Well, that's quite an update. I'll talk with the clinic today about scheduling our return visit and Shingles treatment and if there's anything enlightening, I'll post it here!
She reviewed with me the level of the M-protein under electrophoresis, which is the "can neither confirm nor deny, Senator" reading. In her words, "as researchers, we would consider this to be zero." Sounds great!!!
I then had the presence of mind to ask about the immunofixation test. More good news. I don't have an actual copy so the words may not be exact but they are pretty close. "There is an indistinct lamba band in the gamma region where the original monoclonal protein was observed -- it cannot be ruled in or out." That, also, sounds like zero or damn close to it.
I am waiting to hear it from BB officially, but collectively this sounds like formal Complete Remission to me.
The swelling is MOSTLY down from this thing implanted in my shoulder but I'm starting to realize a couple of things. First, just because the world's foremost MM specialist works out in the sticks doesn't mean that every doctor there that's not affiliated with his clinic is any good. I may have had general surgery performed on me by a barely-passed-his-exams moron. Hmm. Secondly, this portacath isn't quite as small as I figured. I can feel an outline about 2" by 1.5" that's sitting in me like a thick credit card. The swelling is still too pronounced to know where the little bumps are, so I haven't had blood drawn yet. Next week is my target.
Speaking of little bumps...now to the unfortunate news. Turns out what I thought were spider bites are not, in fact spider bites. Like a roof on a mid-century house, I have shingles. This is not unheard of in people with compromised immune systems. Every day we went into the clinic or the infusion center, there's a sign saying "if you have come into contact with the chicken pox virus, please alert a nurse immediately." This is the reason, really, for the daily Acyclovir -- which I have taken in general but I've missed a couple of days, which I'm now regretting. It's far from certain that it would have prevented it.
Never having had this before, it is pretty painful. I've got it on my left side in a patch about six inches square and it feels like a bad burn. I'm going to call the clinic later today to let them know. My hunch is they will ask me to double up on the Acyclovir and potentially also go on Dex...the latter of which I *really* do not want to do but obviously if that's what they prescribe, then that's what they prescribe.
Otherwise, the only real side effect is exhaustion. I need to get out and exercise but both the surgery on the shoulder, and now the Shingles, will prevent me from doing so for at least another week or two. I tried to swing a golf club the other day, and the good news was that it didn't hurt. The bad news is that out of 40 swings, I missed the ball completely three times, and the rest of the time it went 30-50 yards, barely getting above the ground. I'm by no means a good golfer but this represents a significant decline in the quality of my swing. Not sure what it is, but it will work itself out. I hope resolving the Shingles will be as simple.
I plan to return to the office on November 16th, and start working from home sometime in October, pending how well my physical therapy goes (and, of course, assuming that my visit to the clinic in a few weeks doesn't turn up any unpleasant surprises).
One observation I had: normally, I am a workaholic. I was unemployed, essentially, while waiting out the end of a contract I had for about three months in 2003 and I was going stir crazy. I expected to be climbing the walls missing my job this time around. However with minimal exceptions, I haven't really thought about work. I found this very surprising.
But, interestingly, on the day I more or less realized that I'm in CR or headed there pretty quickly, I had the first rumblings of restlessness. I think subconsciously, I have been very, very focused on my health and have been able to put everything else aside without even really noticing the degree to which I was doing so. As soon as my subconscious accepted the fact that I was not going to die from MM, a switch flipped that allowed me to contemplate my job again. Pretty interesting and probably food for thought for others that are undergoing similar journeys.
Well, that's quite an update. I'll talk with the clinic today about scheduling our return visit and Shingles treatment and if there's anything enlightening, I'll post it here!
Wednesday, August 5, 2009
M-spike update (favorable) and a few other things
Hello folks.
It seems the Adriamycin et. al. takes a couple of weeks to finish mangling my cells. My hair, which was about 70% back in, is now falling out in clumps. I'm back to looking like Jason Voorhees, which is a pity. I will have to shave the head sometime soon, although I never completely lost the hair on the back of my head so I'm still hoping maybe there will be some coverage. I know it's probably dumb but it makes me feel like it is closer to coming back if there's something there. Although it looks appalling so there will be baseball caps for my foreseeable future.
I've had a host of other side-effects. Vision is a bit blurry beyond a few feet, I'm extremely tired, I have a hell of time getting a decent night's sleep (have been relying on Ambien the last two nights and I'm scared to go off it) and had a day of intense gastrointestinal distress. It seems odd to have all this happen two weeks after the cessation of the chemo but these things do bad stuff to one's body.
Oh...and the placement of the portacath is still swollen like half a tennis ball and it hurts like a sonovagun. Big scar will probably develop there, too. I'm not terribly pleased about it -- it's far too swollen to think of using it for labs at this point. Hopefully it will come down in the next week or so -- it's still only been six days since surgery.
All right. Now to the good news.
My M-spike is still not zero, but it is now less than trace. It is formally marked on the labs with an asterisk, and the statement "we cannot exclude the presence of monoclonal protein, however none is observed." I was so pleased with this report, which I received from my APN Kristin over the phone, that I didn't ask her about the immunofixation test (which obviously is still positive otherwise there would be a true zero for the M-spike, but perhaps that is the only reason why the M-spike is held at an asterisk?)
At any rate, I am pretty sure that I am formally, now, in near complete remission. Hopefully the M-spike will continue to drop, and when I resume labs (once the swelling goes down and they can find the port -- I didn't go through all this just to have them stick my arm) I'll get that much-desired zero reading. It certainly seems headed there.
I need to start physical therapy eventually, but right now my shoulder hurts far too much to contemplate it, and it affects every moment I make, with the sole potential exception of a stationary bike. I'm going to see where things are in a couple of weeks. I'm still too tired, I think, to do much of anything.
----
Editor's note: Re-reading this, it is an appaling agony column of complaints. I am VERY happy and VERY fortunate to be in near CR with essentially no M-protein in my blood under SPEP. My aches, pains, blurry vision and baldness are a small price to pay for remission. I honestly didn't mean to whine earlier -- I was recording what I felt as I felt it. But on the whole, the entry reads much too negatively. So please understand, the M-protein (I can't even call it a spike any longer) is the most important news!!
It seems the Adriamycin et. al. takes a couple of weeks to finish mangling my cells. My hair, which was about 70% back in, is now falling out in clumps. I'm back to looking like Jason Voorhees, which is a pity. I will have to shave the head sometime soon, although I never completely lost the hair on the back of my head so I'm still hoping maybe there will be some coverage. I know it's probably dumb but it makes me feel like it is closer to coming back if there's something there. Although it looks appalling so there will be baseball caps for my foreseeable future.
I've had a host of other side-effects. Vision is a bit blurry beyond a few feet, I'm extremely tired, I have a hell of time getting a decent night's sleep (have been relying on Ambien the last two nights and I'm scared to go off it) and had a day of intense gastrointestinal distress. It seems odd to have all this happen two weeks after the cessation of the chemo but these things do bad stuff to one's body.
Oh...and the placement of the portacath is still swollen like half a tennis ball and it hurts like a sonovagun. Big scar will probably develop there, too. I'm not terribly pleased about it -- it's far too swollen to think of using it for labs at this point. Hopefully it will come down in the next week or so -- it's still only been six days since surgery.
All right. Now to the good news.
My M-spike is still not zero, but it is now less than trace. It is formally marked on the labs with an asterisk, and the statement "we cannot exclude the presence of monoclonal protein, however none is observed." I was so pleased with this report, which I received from my APN Kristin over the phone, that I didn't ask her about the immunofixation test (which obviously is still positive otherwise there would be a true zero for the M-spike, but perhaps that is the only reason why the M-spike is held at an asterisk?)
At any rate, I am pretty sure that I am formally, now, in near complete remission. Hopefully the M-spike will continue to drop, and when I resume labs (once the swelling goes down and they can find the port -- I didn't go through all this just to have them stick my arm) I'll get that much-desired zero reading. It certainly seems headed there.
I need to start physical therapy eventually, but right now my shoulder hurts far too much to contemplate it, and it affects every moment I make, with the sole potential exception of a stationary bike. I'm going to see where things are in a couple of weeks. I'm still too tired, I think, to do much of anything.
----
Editor's note: Re-reading this, it is an appaling agony column of complaints. I am VERY happy and VERY fortunate to be in near CR with essentially no M-protein in my blood under SPEP. My aches, pains, blurry vision and baldness are a small price to pay for remission. I honestly didn't mean to whine earlier -- I was recording what I felt as I felt it. But on the whole, the entry reads much too negatively. So please understand, the M-protein (I can't even call it a spike any longer) is the most important news!!
Saturday, August 1, 2009
Tamiflu could be the nightmare culprit
Just read that a UK study indicated that children on Tamiflu frequently suffer nightmares as a side-effect of the drug. I wonder if this is what caused my bizarre dreams?
Swelling is down a bit on the site of the portacath installation, which is good. I took Oxycontin yesterday and used Ativan to control the nausea, which seemed to work. I was exhausted all day today, which could be an effect of the drug hangover or could just be because I haven't slept that well the last two weeks. In any case, I look forward to a sound night of sleep tonight.
My beard started falling out rather abruptly -- I woke up this morning and was missing the connection between my mustache and beard on the left hand side. So I clipped it all off, much to the delight of my daughter (who told me tonight to grow it back). The hair on my head is falling out a little bit, but not in clumps...yet. With luck, it will just be a bit of thinning. If I lose it all again, it will be disappointing...though I will happily exchange my hair for being cancer free.
Have a good evening, folks!
Swelling is down a bit on the site of the portacath installation, which is good. I took Oxycontin yesterday and used Ativan to control the nausea, which seemed to work. I was exhausted all day today, which could be an effect of the drug hangover or could just be because I haven't slept that well the last two weeks. In any case, I look forward to a sound night of sleep tonight.
My beard started falling out rather abruptly -- I woke up this morning and was missing the connection between my mustache and beard on the left hand side. So I clipped it all off, much to the delight of my daughter (who told me tonight to grow it back). The hair on my head is falling out a little bit, but not in clumps...yet. With luck, it will just be a bit of thinning. If I lose it all again, it will be disappointing...though I will happily exchange my hair for being cancer free.
Have a good evening, folks!
Friday, July 31, 2009
My arm hurts and American Airline disappoints...
We had such nice expectations for our return home. A combination of advanced ticketing and the use of some hard-earned frequent fliers had us flying home next to each other in sleeper seats on a widebody plane with personal video monitors, free food, etc.
Such was the plan, anyhow.
Mechanical problems delayed our flight from Little Rock to Dallas. After sitting on the tarmac for thirty minutes, they pulled back to the gate to keep fixing the problem, and they had us deplane. I could see trouble brewing so I called American to try to ensure we had reservations on a different flight for the afternoon leg. I was halfway through finishing this when we were told to board again. They went to the trouble of deplaning for 10 minutes -- adding another 20 minutes to our delay getting on and off the plane. We got there with twenty minutes before our other flight took off.
I ran as fast as I could -- which is not fast since I'm in the worst physical condition of my life -- and got to the gate. The door was closed, but the plane was still there. If I had a nickel for every time I have been on a plane where they have announced that they are waiting just a moment for a few passengers connecting from another flight, I'd be a wealthy man. But I have no nickels. Nor did the passengers on the nice widebody plane from Dallas to LA receive any nickels today, since they wrote off the seven or so people connecting to that flight, ourselves included.
By now, of course, first class was sold out all day. And in fact the only seats they had were on a redesigned 737, narrow body jet with VERY narrow seats that do not recline. Jill and I were seated in middle seats in separate rows. My shoulder was killing me, both from the exertion and from the extremely uncomfortable position I was forced into by the small seat.
So much for the triumphant return home.
I have been on Oxycontin for the pain, and the nausea is setting in, so I'm going to have to take something for it. Hopefully the pain will subside by tomorrow.
I'm going to give American a piece of my mind...they had better refund the difference in ticket price and also refund any change fees that they had previously assessed. And they had better refund the difference between 21-day advance purchase coach versus what we had.
I'm very, very ticked off about this.
So much for not sweating the small stuff or hoping to keep my blood pressure under control!
I am completely exhausted and I don't feel well (nausea) so I'm going to go to bed very, very early.
At least, though, we are home!
Such was the plan, anyhow.
Mechanical problems delayed our flight from Little Rock to Dallas. After sitting on the tarmac for thirty minutes, they pulled back to the gate to keep fixing the problem, and they had us deplane. I could see trouble brewing so I called American to try to ensure we had reservations on a different flight for the afternoon leg. I was halfway through finishing this when we were told to board again. They went to the trouble of deplaning for 10 minutes -- adding another 20 minutes to our delay getting on and off the plane. We got there with twenty minutes before our other flight took off.
I ran as fast as I could -- which is not fast since I'm in the worst physical condition of my life -- and got to the gate. The door was closed, but the plane was still there. If I had a nickel for every time I have been on a plane where they have announced that they are waiting just a moment for a few passengers connecting from another flight, I'd be a wealthy man. But I have no nickels. Nor did the passengers on the nice widebody plane from Dallas to LA receive any nickels today, since they wrote off the seven or so people connecting to that flight, ourselves included.
By now, of course, first class was sold out all day. And in fact the only seats they had were on a redesigned 737, narrow body jet with VERY narrow seats that do not recline. Jill and I were seated in middle seats in separate rows. My shoulder was killing me, both from the exertion and from the extremely uncomfortable position I was forced into by the small seat.
So much for the triumphant return home.
I have been on Oxycontin for the pain, and the nausea is setting in, so I'm going to have to take something for it. Hopefully the pain will subside by tomorrow.
I'm going to give American a piece of my mind...they had better refund the difference in ticket price and also refund any change fees that they had previously assessed. And they had better refund the difference between 21-day advance purchase coach versus what we had.
I'm very, very ticked off about this.
So much for not sweating the small stuff or hoping to keep my blood pressure under control!
I am completely exhausted and I don't feel well (nausea) so I'm going to go to bed very, very early.
At least, though, we are home!
Thursday, July 30, 2009
Positive comments in my discharge appointment with BB!
First, they placed the portacath on my chest near my left shoulder in surgery this morning. All I can say is....OUCH THIS HURTS!!! It reminds me of my hernia surgery. If I move my left arm more than an inch it's like a knife being twisted there. I am on Tylenol right now but may need to switch it up to something stronger. This will only last a couple of days but it is not very comfortable in the least. I really hope this was worth it. BB said at dinner last night that he would recommend it, so I guess it will be okay. Hopefully it won't interfere with my (bad) golf swing.
They removed the CVL from the right side of my chest after the procedure was done. I have to admit...it was completely painless. So those of you following the blog that have one of these in you, it is a total non-event. I have grown to not necessarily trust the clinic when they suggest that something "isn't bad at all." However in this case, they are correct. Took about twenty seconds for them to remove the two stitches and pull the thing out and I barely felt anything at all.
After I got out of surgery, we had lunch and then went back for my discharge appointment with BB.
First, turns out I'm not really getting out of here for as long as I thought. Maintenance doesn't begin right away. There is a break of 4-6 weeks, after which I return here for 2-3 days of restaging tests. ANOTHER bone marrow. And **TWO** needle aspirations of lesions. I'm not crazy about doing any of these but I want to make sure we know exactly what is going on with my disease so I will submit to them, provided I am unconscious for it which they have finally started to realize is going to be a mandatory requirement of mine that they shouldn't bother objecting to.
In many cases, bridging therapy (Thalidomide and Dex) is prescribed during this 4-6 week break. Fortunately, in my case, it was not. I really don't ever want to take Thalidomide again. I have very fortunately made it through this whole thing with virtually no neuropathy at all, which I attribute to the combination of MetaNex (the vitamin B complex), Alpha Lipoic Acid supplements, and good fortune.
Now...to the cancer itself. We did not get updated M-spike data today. However I did learn that I was correct in my interpretation of those charts. The big spike on the left is Albumin. The other things on the right are the various types of protein "regions" -- alpha 1, alpha 2, etc. The last group on the right, where the evil protein spike rears its ugly pointed head, is the gamma region.
In a blog a few weeks ago, I may have noted that I have IgG Lamba, low-risk Myeloma, but that I am in a nasty subtype called "proliferation subtype" which confers a less favorable prognosis. I am also in a subtype called "hyperdiploid" which confers a more favorable prognosis. They don't quite balance out -- the proliferation subtype ain't great.
BB showed me more statistics. The five year survival rate for the proliferation subtype in low-risk disease overall is around 80%. However the five year event free survival rate for proliferation subtype in low-risk disease is 100% once CR is achieved. Once again: I MUST ACHIEVE CR. BB clarified this apparent discrepancy in his dictation, which was hilarious. It went something like this.
"While this conundrum appears difficult to reconcile to patient and wife (he winked at us at this point), it is, in fact, simple to explain. Once complete remission is achieved, the lower survival rate of the proliferation subtype is no longer a valid measure and five year event free survival is essentially 100%."
There's a lot in this sentence. First, BB is pretty damn funny. Second, though, consider again how amazing that 100% EFS statistic it. Recall that per the American Cancer Society, five year survival from diagnosis is 34%. THIRTY FOUR PERCENT. Versus ONE HUNDRED PERCENT for low-risk patients (85% of total) that can achieve complete remission (about 80% of those). BB's overall five year survival, including both low and high risk patients, is around 60%. Basically DOUBLE the overall average. And if you consider that the 34% includes those patients that were involved in BB's protocol, the non-protocol patients must be less than 30%.
I am, once again, so very glad I chose this aggressive way to treat the disease.
Now...to the topic of complete remission. I appear to be getting pretty close.
My bone marrow is formally characterized as in complete remission. Hurray!
In the blood, the M-protein is still present. However, under immunofixation, while the M protein is still there, there are also "indistinct kappa bands present." At first I was scared of what this could mean, but it is actually a very positive thing. It means, evidently, that my marrow has resumed normal function. According to BB's dictation -- which I tried to record unsuccessfully due to operator error on my iPhone -- this means the following:
"While immunofixation reveals the uniclonal protein is still present and this would typically confer a very good partial response, in the setting of kappa bands this confers a more profound remission."
I am not quite in CR...but I am getting quite close.
And so, while I thought I would get out of here for three months, I find myself planning a return visit for 3-4 days sometime in September, where more painful tests will be done. In the meantime, I will do weekly blood tests and hopefully watch this M-spike vanish once and for all.
And, of course, I shall keep you all posted.
They removed the CVL from the right side of my chest after the procedure was done. I have to admit...it was completely painless. So those of you following the blog that have one of these in you, it is a total non-event. I have grown to not necessarily trust the clinic when they suggest that something "isn't bad at all." However in this case, they are correct. Took about twenty seconds for them to remove the two stitches and pull the thing out and I barely felt anything at all.
After I got out of surgery, we had lunch and then went back for my discharge appointment with BB.
First, turns out I'm not really getting out of here for as long as I thought. Maintenance doesn't begin right away. There is a break of 4-6 weeks, after which I return here for 2-3 days of restaging tests. ANOTHER bone marrow. And **TWO** needle aspirations of lesions. I'm not crazy about doing any of these but I want to make sure we know exactly what is going on with my disease so I will submit to them, provided I am unconscious for it which they have finally started to realize is going to be a mandatory requirement of mine that they shouldn't bother objecting to.
In many cases, bridging therapy (Thalidomide and Dex) is prescribed during this 4-6 week break. Fortunately, in my case, it was not. I really don't ever want to take Thalidomide again. I have very fortunately made it through this whole thing with virtually no neuropathy at all, which I attribute to the combination of MetaNex (the vitamin B complex), Alpha Lipoic Acid supplements, and good fortune.
Now...to the cancer itself. We did not get updated M-spike data today. However I did learn that I was correct in my interpretation of those charts. The big spike on the left is Albumin. The other things on the right are the various types of protein "regions" -- alpha 1, alpha 2, etc. The last group on the right, where the evil protein spike rears its ugly pointed head, is the gamma region.
In a blog a few weeks ago, I may have noted that I have IgG Lamba, low-risk Myeloma, but that I am in a nasty subtype called "proliferation subtype" which confers a less favorable prognosis. I am also in a subtype called "hyperdiploid" which confers a more favorable prognosis. They don't quite balance out -- the proliferation subtype ain't great.
BB showed me more statistics. The five year survival rate for the proliferation subtype in low-risk disease overall is around 80%. However the five year event free survival rate for proliferation subtype in low-risk disease is 100% once CR is achieved. Once again: I MUST ACHIEVE CR. BB clarified this apparent discrepancy in his dictation, which was hilarious. It went something like this.
"While this conundrum appears difficult to reconcile to patient and wife (he winked at us at this point), it is, in fact, simple to explain. Once complete remission is achieved, the lower survival rate of the proliferation subtype is no longer a valid measure and five year event free survival is essentially 100%."
There's a lot in this sentence. First, BB is pretty damn funny. Second, though, consider again how amazing that 100% EFS statistic it. Recall that per the American Cancer Society, five year survival from diagnosis is 34%. THIRTY FOUR PERCENT. Versus ONE HUNDRED PERCENT for low-risk patients (85% of total) that can achieve complete remission (about 80% of those). BB's overall five year survival, including both low and high risk patients, is around 60%. Basically DOUBLE the overall average. And if you consider that the 34% includes those patients that were involved in BB's protocol, the non-protocol patients must be less than 30%.
I am, once again, so very glad I chose this aggressive way to treat the disease.
Now...to the topic of complete remission. I appear to be getting pretty close.
My bone marrow is formally characterized as in complete remission. Hurray!
In the blood, the M-protein is still present. However, under immunofixation, while the M protein is still there, there are also "indistinct kappa bands present." At first I was scared of what this could mean, but it is actually a very positive thing. It means, evidently, that my marrow has resumed normal function. According to BB's dictation -- which I tried to record unsuccessfully due to operator error on my iPhone -- this means the following:
"While immunofixation reveals the uniclonal protein is still present and this would typically confer a very good partial response, in the setting of kappa bands this confers a more profound remission."
I am not quite in CR...but I am getting quite close.
And so, while I thought I would get out of here for three months, I find myself planning a return visit for 3-4 days sometime in September, where more painful tests will be done. In the meantime, I will do weekly blood tests and hopefully watch this M-spike vanish once and for all.
And, of course, I shall keep you all posted.
Wednesday, July 29, 2009
Hello left hand? Meet the right hand. You guys should talk more often!!!
So there was no surgery this morning.
I got up painfully early and went in to make sure my platelets were still in good shape. While there, I told them go ahead and run one last set of labs. Why not! Blood for everybody, on the house! :)
I left the infusion center and went over to the outpatient surgery center on the 4th floor of the hospital where I've had all the bone marrows done before. They couldn't find us in their ledger, and referred us to a different surgery clinic around the corner where kidney transplants are done. Hmm.
Anyhow, this was the right place. They had me on the ledger there. We waited, and I was called, and went back.
That's when the RN said "just so you know, you're not having surgery today."
Turns out I was just there to meet with the doctor. This was mildly irritating (to say the least) since we have carefully scheduled our remaining few days here. I went to the trouble of having a platelet infusion that wasn't necessary, for one thing! My blood pressure, which was 117 over 82 in the clinic, suddenly was 140 over 90. Grrrrr!!!!
We then met with the doctor, a fairly young guy who was nice enough. Except he started off by telling me how much higher the risk of infection was with Myeloma patients, and then went through the list of all the things that could go wrong with a portacath. Do I want to hear that carrying a golf bag could give me a pulmonary embolism? No, I do not.
It was a pretty depressing conversation, to tell you the truth. They have to place this thing deep under the skin and cut through muscle, etc. It's closer to a hernia operation than a line placement, actually. I left pretty ambivalent about whether or not to do it after all. I figured it might be easier to do nothing, just have the one line removed, and then maybe in a few weeks try maintenance and see how bad it is trying to let them just do the IVs.
As I was ruminating on this, Kristen, the APN from the infusion center, called. My CRP has come down, which is good. My uric acid is coming down thanks to the Allopurinol tablets that I was prescribed. Also good. My platelets were 81 post infusion yesterday and 84 this morning, so they held and increased a bit. I am sure I will be over 75 tomorrow, so that should be fine.
The M-spike, despite the smaller hump size in the graphs I posted last night, remains at trace levels. I'm not concerned.
Kristen did say that she has never encountered anybody with a portacath who regretted having it placed. That helped out a bit. I'm going to have dinner with BB and BJ again (BB's wife is out of town or she would be joining us) as a farewell meal, and I'll see what he thinks about the likelihood of complications and whether or not I should have this done here versus just having the line pulled and then dealing with the portacath at some point in the future.
As it stand now, I have surgery tomorrow morning at 9AM, and then a discharge appointment with BB at 3PM. I will go into the infusion center at 7AM -- might as well get one more lab out of me for kicks, plus they will run cancer markers on it and it's the last chance to see the M-spike before we leave town.
I'll post an update.
I had a long conversation today with a gentleman from Los Angeles whose wife, age 61, has been through Myeloma hell for about a year. She began treatment under Dr. JB -- the guy who doesn't do any transplants -- in LA and it didn't work out. She got very ill, and then was looking into Dr. SF at City of Hope but had to be hospitalized. She managed to recover against all odds, and part of the protocol was a single transplant by Dr. RV, another one of the folks that I was going to consult with back in Los Angeles long ago. The single transplant didn't take either, so this couple finds themselves here. Her husband actually just took out a lease on the condo unit on the floor directly beneath us.
At any rate, I had a great conversation with this gentleman -- he and his wife have the exact right attitude to bring to this fight. It feels good to be helping others -- as I said, I am fortunate that I have fared as well as I have, such that I can start turning some of my attention from managing my own disease to helping others manage theirs.
The apartment has been cleaned out...our car is loaded onto a truck and being sent back to California...and we fly back in Friday. As I said goodbye to the friends we have made among the care providers and fellow patients, I can't help but think back to high school graduation -- it's that same type of feeling. Except, frankly, high school was worse in some ways than cancer. :)
More news tomorrow, I am sure. And I should sleep well tonight as I'm dead on my feet. :)
I got up painfully early and went in to make sure my platelets were still in good shape. While there, I told them go ahead and run one last set of labs. Why not! Blood for everybody, on the house! :)
I left the infusion center and went over to the outpatient surgery center on the 4th floor of the hospital where I've had all the bone marrows done before. They couldn't find us in their ledger, and referred us to a different surgery clinic around the corner where kidney transplants are done. Hmm.
Anyhow, this was the right place. They had me on the ledger there. We waited, and I was called, and went back.
That's when the RN said "just so you know, you're not having surgery today."
Turns out I was just there to meet with the doctor. This was mildly irritating (to say the least) since we have carefully scheduled our remaining few days here. I went to the trouble of having a platelet infusion that wasn't necessary, for one thing! My blood pressure, which was 117 over 82 in the clinic, suddenly was 140 over 90. Grrrrr!!!!
We then met with the doctor, a fairly young guy who was nice enough. Except he started off by telling me how much higher the risk of infection was with Myeloma patients, and then went through the list of all the things that could go wrong with a portacath. Do I want to hear that carrying a golf bag could give me a pulmonary embolism? No, I do not.
It was a pretty depressing conversation, to tell you the truth. They have to place this thing deep under the skin and cut through muscle, etc. It's closer to a hernia operation than a line placement, actually. I left pretty ambivalent about whether or not to do it after all. I figured it might be easier to do nothing, just have the one line removed, and then maybe in a few weeks try maintenance and see how bad it is trying to let them just do the IVs.
As I was ruminating on this, Kristen, the APN from the infusion center, called. My CRP has come down, which is good. My uric acid is coming down thanks to the Allopurinol tablets that I was prescribed. Also good. My platelets were 81 post infusion yesterday and 84 this morning, so they held and increased a bit. I am sure I will be over 75 tomorrow, so that should be fine.
The M-spike, despite the smaller hump size in the graphs I posted last night, remains at trace levels. I'm not concerned.
Kristen did say that she has never encountered anybody with a portacath who regretted having it placed. That helped out a bit. I'm going to have dinner with BB and BJ again (BB's wife is out of town or she would be joining us) as a farewell meal, and I'll see what he thinks about the likelihood of complications and whether or not I should have this done here versus just having the line pulled and then dealing with the portacath at some point in the future.
As it stand now, I have surgery tomorrow morning at 9AM, and then a discharge appointment with BB at 3PM. I will go into the infusion center at 7AM -- might as well get one more lab out of me for kicks, plus they will run cancer markers on it and it's the last chance to see the M-spike before we leave town.
I'll post an update.
I had a long conversation today with a gentleman from Los Angeles whose wife, age 61, has been through Myeloma hell for about a year. She began treatment under Dr. JB -- the guy who doesn't do any transplants -- in LA and it didn't work out. She got very ill, and then was looking into Dr. SF at City of Hope but had to be hospitalized. She managed to recover against all odds, and part of the protocol was a single transplant by Dr. RV, another one of the folks that I was going to consult with back in Los Angeles long ago. The single transplant didn't take either, so this couple finds themselves here. Her husband actually just took out a lease on the condo unit on the floor directly beneath us.
At any rate, I had a great conversation with this gentleman -- he and his wife have the exact right attitude to bring to this fight. It feels good to be helping others -- as I said, I am fortunate that I have fared as well as I have, such that I can start turning some of my attention from managing my own disease to helping others manage theirs.
The apartment has been cleaned out...our car is loaded onto a truck and being sent back to California...and we fly back in Friday. As I said goodbye to the friends we have made among the care providers and fellow patients, I can't help but think back to high school graduation -- it's that same type of feeling. Except, frankly, high school was worse in some ways than cancer. :)
More news tomorrow, I am sure. And I should sleep well tonight as I'm dead on my feet. :)
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