So the answer to the question of "can you do a kyphoplasty on vertebrae that have already been through a vertebroplasty?" is "no".
Would have been good to know before we got up this morning to be at the hospital nice and early!
Oh well...I'll never get that lost height back but it's not the end of the world. We meet with BB this afternoon and I will have a full report at that time.
Friday, May 28, 2010
Thursday, May 27, 2010
Hello from Arkansas
Or should I say "howdy."
We got here Tuesday night and ate a great pizza at Damgoode Pies. One of the things I miss around here.
Yesterday was a verrrrry long day. Went to the hospital at 5AM to have my port accessed. I didn't want half a dozen blood draws, IV inserts, etc. After that it was a 6AM PET scan, 8:30AM visit with the research nurse here, 9:30AM x-rays, 10AM EKG, 11AM check-in at the MRI and after two hours in a tube with long banging noises, a celebratory late lunch at Whole Hog BBQ. Then I worked until around midnight.
Today, we do bone marrow. A bit less hectic than yesterday.
I have seen a couple of very young people here on this trip, including a girl yesterday who looked like she cannot have been older than 25.
I also met, on the flight from Dallas to Little Rock, a woman who completed Total Therapy 1 in 1996. Almost fourteen years later, she has no trace of the disease. And she did not have the benefit of thalidomide, revlimid or velcade. Basically she had old chemotherapy (probably VAD) and two transplants. And no maintenance therapy other than perhaps dex. Remarkable proof that people are being cured.
My appointment with BB is on Friday -- will report what I learn!
We got here Tuesday night and ate a great pizza at Damgoode Pies. One of the things I miss around here.
Yesterday was a verrrrry long day. Went to the hospital at 5AM to have my port accessed. I didn't want half a dozen blood draws, IV inserts, etc. After that it was a 6AM PET scan, 8:30AM visit with the research nurse here, 9:30AM x-rays, 10AM EKG, 11AM check-in at the MRI and after two hours in a tube with long banging noises, a celebratory late lunch at Whole Hog BBQ. Then I worked until around midnight.
Today, we do bone marrow. A bit less hectic than yesterday.
I have seen a couple of very young people here on this trip, including a girl yesterday who looked like she cannot have been older than 25.
I also met, on the flight from Dallas to Little Rock, a woman who completed Total Therapy 1 in 1996. Almost fourteen years later, she has no trace of the disease. And she did not have the benefit of thalidomide, revlimid or velcade. Basically she had old chemotherapy (probably VAD) and two transplants. And no maintenance therapy other than perhaps dex. Remarkable proof that people are being cured.
My appointment with BB is on Friday -- will report what I learn!
Friday, May 21, 2010
Neuropathy and other notes
I noticed yesterday that for much of the day, I had a barely perceptible tingle in my feet. I first noticed it around noon and it persisted until I went to bed. Today, I feel it less, but it is still there.
I wouldn't say it's enough to get me overwrought, but I am starting to get a tiny bit concerned. I doubt it is from the Revlimid, since I didn't develop neuropathy while on Thalidomide and that's much more likely to cause it. The more likely culprit, then, is the Velcade.
I am told Velcade-related neuropathy can go away if the Velcade is discontinued. I am obviously not going to do that, but I might see if they want to dose reduce back to 1mg/m2 from my 1.3. The higher dose is because of my unfavorable sub-type of the disease, though...so even dose-reducing that could deter me from my progress which I don't want to do.
I visit Little Rock next week for PET, MRI, bone marrow and potentially kyphoplasty on my back. It should be an interesting few days, as always! I wasn't originally going to submit to the PET but I confess that I'm interested in getting as much information as possible given that the stray monoclonal light chain wandered into the immunofixation analysis the other day.
Among the questions I want to ask BB about:
- neuropathy
- reimmunization thoughts
- use of polymerase chain reaction test to determine molecular remission
Obviously I'm also keen to see if I have reached "MRI complete remission" yet.
Lastly, I was invited by ASCO (the American Society of Clinical Oncologists) to attend their upcoming conference in June. I would ***LOVE*** to do this, but my schedule will not permit it. However I do hope to do the next one.
I wouldn't say it's enough to get me overwrought, but I am starting to get a tiny bit concerned. I doubt it is from the Revlimid, since I didn't develop neuropathy while on Thalidomide and that's much more likely to cause it. The more likely culprit, then, is the Velcade.
I am told Velcade-related neuropathy can go away if the Velcade is discontinued. I am obviously not going to do that, but I might see if they want to dose reduce back to 1mg/m2 from my 1.3. The higher dose is because of my unfavorable sub-type of the disease, though...so even dose-reducing that could deter me from my progress which I don't want to do.
I visit Little Rock next week for PET, MRI, bone marrow and potentially kyphoplasty on my back. It should be an interesting few days, as always! I wasn't originally going to submit to the PET but I confess that I'm interested in getting as much information as possible given that the stray monoclonal light chain wandered into the immunofixation analysis the other day.
Among the questions I want to ask BB about:
- neuropathy
- reimmunization thoughts
- use of polymerase chain reaction test to determine molecular remission
Obviously I'm also keen to see if I have reached "MRI complete remission" yet.
Lastly, I was invited by ASCO (the American Society of Clinical Oncologists) to attend their upcoming conference in June. I would ***LOVE*** to do this, but my schedule will not permit it. However I do hope to do the next one.
Monday, May 17, 2010
Some random observations
Hello folks.
First of all, I got another chest-cold. My darling little son had a runny nose on Mother's Day as I was playing with him at the park, and it was just a matter of time. I started feeling sick on Tuesday night, and I started taking Tamiflu and Augmentin and I had hopes that it was going to be gone as I felt good yesterday, but today it's gotten worse. So I will continue to monitor it.
Second, I switched my Velcade to Monday this week because of some potential emergency work travel tomorrow. With one less day to recover from the last infusion, I'm not surprised my counts were on the suppressed side but they were a bit worse than I thought. WBC at 2.9, platelets at 108. HGB was at 14, which is pretty good for me.
Third, I got the Velcade in the morning. Velcade has some side effects which I've mostly been able to avoid, but they include flu-like symptoms, headache, and fever. Normally, I take dex which suppresses all these symptoms. Regular readers may recall one of my primary care doctors, who is an infectious disease specialist, surmised that this was why steroids were taken at the same time as Velcade. Well, here's the problem. Normally I get Velcade in the afternoon, take the Dex about eight hours later, and then sleep. Today, I got Velcade at 8AM, and haven't taken Dex. 12 hours later I feel horrible -- fever, headache, flu-like symptoms. So the moral of the story is: make sure, when taking Velcade, to go to sleep less than 8 hours later.
First of all, I got another chest-cold. My darling little son had a runny nose on Mother's Day as I was playing with him at the park, and it was just a matter of time. I started feeling sick on Tuesday night, and I started taking Tamiflu and Augmentin and I had hopes that it was going to be gone as I felt good yesterday, but today it's gotten worse. So I will continue to monitor it.
Second, I switched my Velcade to Monday this week because of some potential emergency work travel tomorrow. With one less day to recover from the last infusion, I'm not surprised my counts were on the suppressed side but they were a bit worse than I thought. WBC at 2.9, platelets at 108. HGB was at 14, which is pretty good for me.
Third, I got the Velcade in the morning. Velcade has some side effects which I've mostly been able to avoid, but they include flu-like symptoms, headache, and fever. Normally, I take dex which suppresses all these symptoms. Regular readers may recall one of my primary care doctors, who is an infectious disease specialist, surmised that this was why steroids were taken at the same time as Velcade. Well, here's the problem. Normally I get Velcade in the afternoon, take the Dex about eight hours later, and then sleep. Today, I got Velcade at 8AM, and haven't taken Dex. 12 hours later I feel horrible -- fever, headache, flu-like symptoms. So the moral of the story is: make sure, when taking Velcade, to go to sleep less than 8 hours later.
Wednesday, May 12, 2010
Quick update with good news from my labs last week
Most importantly, serum immunofixation is back to: "No monoclonal proteins detected." Complete remission. Phew! I am prepared to chalk up the previous reading to residual noise that is being eliminated through VRD for another 28 months or so.
After a week off Revlimid, I guess I expected my counts to recover more than they did. Whites remain at 4.2, which isn't horrible but is a bit on the low side. HGB is 13. Again, not horrible, but a bit on the low side. Platelets are 108. These are pretty darn low, but previous experience indicates that they usually recover with a bit of lag -- that is, after the first week back on Revlimid they usually go up.
When the deal I am running right now subsides (it should do so this week, although I've been thinking / hoping / praying that would be the case every day for two weeks now) I will hopefully have time to blog more regularly and put some data up. I would think that those in maintenance (or induction, depending on protocol) using VRD would be interested to see these counts over time.
I go back to Arkansas in two weeks for the Full Monty of tests: PET, MRI, bone marrow, bloodwork. I may even submit to a gene array (more marrow pulled out) but I might wait until their own data there shows that I no longer have any monoclonal protein. Right now, they have the hedged version of that: monoclonal protein might exists but we can't find it. This is still complete remission, but I want stringest complete remission / molecular remission, dammit! And once that happens, I did promise BB and BJ that they could do another gene array on me. So...I guess that will be a good problem to have!
I am quite tired these days...some of it is probably the ungodly hours (literally 18 hours a day, 7 days a week for the past month) and some of it is the drugs. I also notice that my muscles deteriorate. I haven't had time to run; when I did, I was winded pretty quickly but I will try to pick that back up. But in the morning in bed, if I try to even do a good stretch, my calves instantly cramp up. It's quite unpleasant and a bit disconcerting.
That said, I am managing stress VERY differently than I used to. I used to run around in a panic and I would have this desparate, pit-of-the-stomach dread that would rise up with some regularity when I was under the gun. Now, I nip that in the bud. When the workplace is unreasonable, I refuse to let it drive me crazy. As a result, there have only been two days in the past month where I've really felt stressed out. It used to be more like three days a week like that. So my post-cancer self is managing this a bit better -- which is critical as I'm pretty sure that stress is what gave me the cancer in the first place.
And otherwise, I feel good!
I might also add that the testosterone shot that I got in the ol' gluteus maximus hurt like a sonofabiscuit for about three days. The other shots were painless -- this one felt like deep bone pain, almost (although I know it was muscles and not bone).
Hope you are all well!
After a week off Revlimid, I guess I expected my counts to recover more than they did. Whites remain at 4.2, which isn't horrible but is a bit on the low side. HGB is 13. Again, not horrible, but a bit on the low side. Platelets are 108. These are pretty darn low, but previous experience indicates that they usually recover with a bit of lag -- that is, after the first week back on Revlimid they usually go up.
When the deal I am running right now subsides (it should do so this week, although I've been thinking / hoping / praying that would be the case every day for two weeks now) I will hopefully have time to blog more regularly and put some data up. I would think that those in maintenance (or induction, depending on protocol) using VRD would be interested to see these counts over time.
I go back to Arkansas in two weeks for the Full Monty of tests: PET, MRI, bone marrow, bloodwork. I may even submit to a gene array (more marrow pulled out) but I might wait until their own data there shows that I no longer have any monoclonal protein. Right now, they have the hedged version of that: monoclonal protein might exists but we can't find it. This is still complete remission, but I want stringest complete remission / molecular remission, dammit! And once that happens, I did promise BB and BJ that they could do another gene array on me. So...I guess that will be a good problem to have!
I am quite tired these days...some of it is probably the ungodly hours (literally 18 hours a day, 7 days a week for the past month) and some of it is the drugs. I also notice that my muscles deteriorate. I haven't had time to run; when I did, I was winded pretty quickly but I will try to pick that back up. But in the morning in bed, if I try to even do a good stretch, my calves instantly cramp up. It's quite unpleasant and a bit disconcerting.
That said, I am managing stress VERY differently than I used to. I used to run around in a panic and I would have this desparate, pit-of-the-stomach dread that would rise up with some regularity when I was under the gun. Now, I nip that in the bud. When the workplace is unreasonable, I refuse to let it drive me crazy. As a result, there have only been two days in the past month where I've really felt stressed out. It used to be more like three days a week like that. So my post-cancer self is managing this a bit better -- which is critical as I'm pretty sure that stress is what gave me the cancer in the first place.
And otherwise, I feel good!
I might also add that the testosterone shot that I got in the ol' gluteus maximus hurt like a sonofabiscuit for about three days. The other shots were painless -- this one felt like deep bone pain, almost (although I know it was muscles and not bone).
Hope you are all well!
Wednesday, May 5, 2010
White counts, side effect roundup, bad dreams, etc.
Howdy folks.
So the white count mystery from last week is just that: a mystery. Yesterday they were back down at three-and-change (I'm going to demand my labs through my always-excellent advocate, PinnacleCare) so in the "new normal" range (i.e. suppressed from the Revlimid but not to dangerous levels). I am off the Revlimid this week so it should be able to recovery slightly before being suppressed again for another three weeks.
No explanation of why it spiked up to 14. Could have been response to exposure to a potential bug, could have been something else. Since it had detail behind it and was heavy on granulocytes I am reasonably certain it was my blood that was reported upon rather than a lab error.
In an effort to reduce the number of pills in my medicine cabinet, I swapped out (momentarily) the ZMA supplement for pure magnesium pills that I was prescribed during my hospital stay in Arkansas last year. I have been taking 500mg of magnesium a day (versus the 600 that comes from the ZMA). Got a cramp in the small of my foot last night which was pretty painful but generally they are not a problem any longer. When I've depleted this bottle of magnesium pills, I will go back on the ZMA.
As far as other side effects, I've not felt the tingling in the legs since I blogged about it a couple of weeks ago, so I don't think I'm at serious risk for neuropathy. I made sure to get the brand name MetaNX rather than the generic in an effort to have B vitamins that are more easily absorbed. Hopefully that will carry the day.
I did have a curious side effect -- another bad dream, fairly vivid. These aren't nightmares, per se, in terms of physical danger or monsters or phantasmagorical material. Rather, they are emotionally dreadful situations (e.g. horrible fights with family members and children) that are realistic enough to be jarring long after one wakes from them and proves them to be shadows. I had two or three of these with terrible intensity during my induction and consolidation chemotherapy and noted them in the blog at that time -- hadn't had one since and this wasn't *quite* as bad, but it does make we wonder if this curious side-effect is a result of Velcade and Dex (the latter of which I received in very high dose during induction and consolidation) rather than the other chemo agents. Has anybody else experienced these dreams?
So the white count mystery from last week is just that: a mystery. Yesterday they were back down at three-and-change (I'm going to demand my labs through my always-excellent advocate, PinnacleCare) so in the "new normal" range (i.e. suppressed from the Revlimid but not to dangerous levels). I am off the Revlimid this week so it should be able to recovery slightly before being suppressed again for another three weeks.
No explanation of why it spiked up to 14. Could have been response to exposure to a potential bug, could have been something else. Since it had detail behind it and was heavy on granulocytes I am reasonably certain it was my blood that was reported upon rather than a lab error.
In an effort to reduce the number of pills in my medicine cabinet, I swapped out (momentarily) the ZMA supplement for pure magnesium pills that I was prescribed during my hospital stay in Arkansas last year. I have been taking 500mg of magnesium a day (versus the 600 that comes from the ZMA). Got a cramp in the small of my foot last night which was pretty painful but generally they are not a problem any longer. When I've depleted this bottle of magnesium pills, I will go back on the ZMA.
As far as other side effects, I've not felt the tingling in the legs since I blogged about it a couple of weeks ago, so I don't think I'm at serious risk for neuropathy. I made sure to get the brand name MetaNX rather than the generic in an effort to have B vitamins that are more easily absorbed. Hopefully that will carry the day.
I did have a curious side effect -- another bad dream, fairly vivid. These aren't nightmares, per se, in terms of physical danger or monsters or phantasmagorical material. Rather, they are emotionally dreadful situations (e.g. horrible fights with family members and children) that are realistic enough to be jarring long after one wakes from them and proves them to be shadows. I had two or three of these with terrible intensity during my induction and consolidation chemotherapy and noted them in the blog at that time -- hadn't had one since and this wasn't *quite* as bad, but it does make we wonder if this curious side-effect is a result of Velcade and Dex (the latter of which I received in very high dose during induction and consolidation) rather than the other chemo agents. Has anybody else experienced these dreams?
Thursday, April 29, 2010
An explosion of granulocytes!
So today I went back to Dr. GD's office for a Velcade infusion. They drew my blood, and came back with the CBC.
Interestingly (or perhaps alarmingly) my whites are at 14. I thought I read it wrong at first -- i thought I was reading Hemoglobin! My white have been above 6 only once since September.
Almost all of this coming from granulocytes -- immature WBCs that are the least suppressed by Velcade and Revlimid. I suppose that's good -- if all three kinds of major WBCs were off the charts, I'd be worried something was wrong with my white cells.
As it is...I'm not sure what to think. I'm not sick. I haven't been infected with anything. I don't have a fever.
Now...if I was in Arkansas, they'd have run a C-reactive protein (CRP) to find out if I've got anything else going in. GD wasn't even in today, and although I could have told them do run CRP, they don't normally do it there anyway. My frustration with them continues.
Anyhow...I guess I'll wait until next week and see what happens. If I've got leukemia now, one week won't matter!
Meanwhile, everything else is moving along. I went on a run this morning -- I'm in the worst shape of my life. My legs started cramping after half a mile. It's frustrating because I know I need physical therapy but the demands of my job will not allow it. I'm going to have to work out some kind of compromise with my boss after my current deal ends -- which I hope will happen in the next few days.
Took Senna this morning -- nothing yet. Will take another in the morning if need be.
And that's all the news that's fit to print for the evening folks. Nitey night.
Interestingly (or perhaps alarmingly) my whites are at 14. I thought I read it wrong at first -- i thought I was reading Hemoglobin! My white have been above 6 only once since September.
Almost all of this coming from granulocytes -- immature WBCs that are the least suppressed by Velcade and Revlimid. I suppose that's good -- if all three kinds of major WBCs were off the charts, I'd be worried something was wrong with my white cells.
As it is...I'm not sure what to think. I'm not sick. I haven't been infected with anything. I don't have a fever.
Now...if I was in Arkansas, they'd have run a C-reactive protein (CRP) to find out if I've got anything else going in. GD wasn't even in today, and although I could have told them do run CRP, they don't normally do it there anyway. My frustration with them continues.
Anyhow...I guess I'll wait until next week and see what happens. If I've got leukemia now, one week won't matter!
Meanwhile, everything else is moving along. I went on a run this morning -- I'm in the worst shape of my life. My legs started cramping after half a mile. It's frustrating because I know I need physical therapy but the demands of my job will not allow it. I'm going to have to work out some kind of compromise with my boss after my current deal ends -- which I hope will happen in the next few days.
Took Senna this morning -- nothing yet. Will take another in the morning if need be.
And that's all the news that's fit to print for the evening folks. Nitey night.
Monday, April 26, 2010
No Alpha Lipoic Acid...and now I remember why.
I had taken some Alpha Lipoic Acid for a while, rather sporadically and without too much conviction, during the time I was on thalidomide. This is a pill (though it can also be given intravenously) that is used with diabetic to combat neuropathy, and it's also been recommended by some Myeloma centers (for example, Dana Farber had it in their regimen, at least in 2006, as can be seen here.
However, a more recent paper presented at ASH in 2009 is titled Alpha Lipoic Acid (ALA) Inhibits the Anti-Myeloma Effects of Bortezomib. That's pretty dry, as far as light reading goes. However, anything that makes Velcade (Bortezomib) not work as well is off limits.
As I type this, there's no pain or numbness. It feels like my shins are asleep, if that makes sense to anybody. Except I wouldn't say the tingling is significant...it's barely there. Yet still, enough to notice.
One reader was kind enough to mention B vitamins. I do take, on my Revlimid nights, something called Folast. This was supposed to be a generic form of MetaNX -- a complex of folic acid, B6 and B12 -- which is used to combat diabetic neuropathy. I read here, however, that Folast has an inactive form of one of the B vitamins, which makes it not as effective. MetaNX uses the active form of these vitamins. So I better fight for the non-generic!
This post is a little link-happy but this information is specific enough where I wanted people that might be interest to be able to read the same source materials that I'm reading.
However, a more recent paper presented at ASH in 2009 is titled Alpha Lipoic Acid (ALA) Inhibits the Anti-Myeloma Effects of Bortezomib. That's pretty dry, as far as light reading goes. However, anything that makes Velcade (Bortezomib) not work as well is off limits.
As I type this, there's no pain or numbness. It feels like my shins are asleep, if that makes sense to anybody. Except I wouldn't say the tingling is significant...it's barely there. Yet still, enough to notice.
One reader was kind enough to mention B vitamins. I do take, on my Revlimid nights, something called Folast. This was supposed to be a generic form of MetaNX -- a complex of folic acid, B6 and B12 -- which is used to combat diabetic neuropathy. I read here, however, that Folast has an inactive form of one of the B vitamins, which makes it not as effective. MetaNX uses the active form of these vitamins. So I better fight for the non-generic!
This post is a little link-happy but this information is specific enough where I wanted people that might be interest to be able to read the same source materials that I'm reading.
Sunday, April 25, 2010
Tingly feet...
Well...I think it's starting to happen. I wouldn't call it painful, I wouldn't even call it distracting, but if I think about it, I can feel a little tingle from my ankles down. The dreaded peripheral neuropathy.
Now since I didn't get this while on Thalidomide, it's coming either from the Revlimid or, more likely, the Velcade. And that's a type of neuropathy that hopefully goes away with a reduction in that medicine. Of course, the little reminder from my bloodwork the other day indicates that I'm not ready to cease Velcade. But I wonder if we might want to taper it back from the 1.3mg/m2 that I'm currently enjoying to the previous 1.0mg/m2.
Something else for BB when I meet with him in a few weeks.
In other news, I remain hopeful that they'll be able to do a kyphoplasty (aka "poof up" my vertebrae) when I go to Little Rock in a few weeks. Wouldn't mind getting back the height I lost.
I've also decided that I'm going to submit myself to the full battery of tests while there. I was thinking of bagging the PET since I don't need more radiation...but since I'm not yet satisfied that I'm in the most complete remission possible, I'd like to see what's going on. So I'll do that, the horrible 2-hour full body MRI, the bone marrow, the works.
I'm looking forward to seeing a few friends, and also to eating Whole Hog BBQ!
Now since I didn't get this while on Thalidomide, it's coming either from the Revlimid or, more likely, the Velcade. And that's a type of neuropathy that hopefully goes away with a reduction in that medicine. Of course, the little reminder from my bloodwork the other day indicates that I'm not ready to cease Velcade. But I wonder if we might want to taper it back from the 1.3mg/m2 that I'm currently enjoying to the previous 1.0mg/m2.
Something else for BB when I meet with him in a few weeks.
In other news, I remain hopeful that they'll be able to do a kyphoplasty (aka "poof up" my vertebrae) when I go to Little Rock in a few weeks. Wouldn't mind getting back the height I lost.
I've also decided that I'm going to submit myself to the full battery of tests while there. I was thinking of bagging the PET since I don't need more radiation...but since I'm not yet satisfied that I'm in the most complete remission possible, I'd like to see what's going on. So I'll do that, the horrible 2-hour full body MRI, the bone marrow, the works.
I'm looking forward to seeing a few friends, and also to eating Whole Hog BBQ!
Friday, April 23, 2010
Thai food and velcade do not mix...
I have come to the conclusion -- after two similar experiences eating spicy thai food from a restaurant that I used to love -- that either my constitution has been radically altered by what I've been through, or there's a specific reaction between an ingredient in that food and the meds that I'm on. Anyhow, long story short is I was far sicker than any chemo last night. Who knew the primary ingredient in Chicken Gra Pow was melphalan?
For reference next time, I will attempt one Senna pill on Wednesday morning. Tuesday night is too soon; Wednesday night a smidge too late.
For reference next time, I will attempt one Senna pill on Wednesday morning. Tuesday night is too soon; Wednesday night a smidge too late.
Wednesday, April 21, 2010
Helpful commentary from BJ
I fax the labs -- that my local doctor here has had for two weeks without telling me about them -- and an hour later I get a thoughtful response from BJ that cross-references the last blood I sent to Arkansas. And this response, while recognizing the limitations of a non-doctor response, is about 100X more helpful than what I got yesterday.
Patients: no matter where you choose to be treated, and no matter what philosophy (control, cure, curcumin) you embrace, demand that doctors treat you as someone who understands their disease, and who is entitled to know the results of every test on a timely basis. It's your body!
Anyhow, here's the news from Arkansas, which is both a bummer (I have not been consistently immunofixation negative) and somewhat reassuring (this is probably the sign of recovering marrow rather than myeloma):
A few things to highlight: responsiveness to a patient they haven't seen in person in three months, enough data for me to make my own conclusions, and an admission of where the knowledge is incomplete. Were I interested, I could get BB on the phone to bottom this out today, but I will see him in a month so there's no real urgency to it. Also, I'm sure they would have contacted me on March 9th had they not seen this before and discussed the same issue (oligoclonal bands as a good sign) with me once before.
Again: regardless of your philosophy on this disease or your physician's philosophy, demand to be treated like an adult and get whatever information you want. I understand many people don't have the desire to dive into the information the way I do, so your mileage may vary. But beware the doctor that puts data into a black box and refuses to share it. I spoke with the wife of one patient my age recently and her experience with her husband's doctors has been AWFUL -- as in they don't know the result of bone marrow analyses done WEEKS ago.
Don't stand for it!
Patients: no matter where you choose to be treated, and no matter what philosophy (control, cure, curcumin) you embrace, demand that doctors treat you as someone who understands their disease, and who is entitled to know the results of every test on a timely basis. It's your body!
Anyhow, here's the news from Arkansas, which is both a bummer (I have not been consistently immunofixation negative) and somewhat reassuring (this is probably the sign of recovering marrow rather than myeloma):
This is the language found on almost all your reports, fairly consistently, describing your [immunofixation results]:
Immunofix. Serum on March 8, 2010. The original IgG lambda M-protein may be present. An indistinct band is present in the position of the original M-protein. Plus additional indistinct IgG lambda and IgG kappa bands.
The biggest difference is that the original monoclonal band was with a heavy chain (IgG) and a lite chain (lambda) and [the report you faxed] shows a faint monoclonal free lambda light chain without a heavy chain which is not your original clone.
My pea brain is not equipped to analyze what that means, but it probably means nothing. Every once and a while you have what are called oligoclonal faint bands which is seen in recovering marrow. Good conversation to have with [BB]. Right now I would say poof, nuttin! Maintenance is usually for 3 years because that is the population that seems to have the ‘cure’ signature. Again a very notable conversation for [BB].
A few things to highlight: responsiveness to a patient they haven't seen in person in three months, enough data for me to make my own conclusions, and an admission of where the knowledge is incomplete. Were I interested, I could get BB on the phone to bottom this out today, but I will see him in a month so there's no real urgency to it. Also, I'm sure they would have contacted me on March 9th had they not seen this before and discussed the same issue (oligoclonal bands as a good sign) with me once before.
Again: regardless of your philosophy on this disease or your physician's philosophy, demand to be treated like an adult and get whatever information you want. I understand many people don't have the desire to dive into the information the way I do, so your mileage may vary. But beware the doctor that puts data into a black box and refuses to share it. I spoke with the wife of one patient my age recently and her experience with her husband's doctors has been AWFUL -- as in they don't know the result of bone marrow analyses done WEEKS ago.
Don't stand for it!
A bit calmer now...so some perspective!
Thanks for the words of support in response to yesterday's little bump in the road.
Having thought about it a bit, of course I wanted to never see any trace of anything wrong with me ever again, and I believe I'll get there, but I'm not there yet. Pretty simple logic: if I had no myeloma cells left in my body, what would be the purpose of maintenance therapy? BB knows this, hence the VRD that I'm on for at least another 28 months. If, in fact, this was a busted up piece of a monoclonal protein that wandered into the bloodstream, it's evidence of the need to continue maintenance, and it will get obliterated by the cocktail that I'm on, along with whatever cell created it. I will stick with the program, then! Onward!
Now the failure of my doctor to get me my labs is another story. My friend Sean, whom I met during transplants in Little Rock and whose unfailing good spirits and positivity are quite inspiring, noted that he goes to an infusion center that is not manned by a hematologist and they follow BB's orders to the letter. They draw blood, call Arkansas to confirm the counts and get approval for the velcade infusion, send the blood to Arkansas for further analysis and administer the velcade. That sounds like a good solution! Perhaps I will seek one of those places out.
By the way, Sean maintains a blog here.
Having thought about it a bit, of course I wanted to never see any trace of anything wrong with me ever again, and I believe I'll get there, but I'm not there yet. Pretty simple logic: if I had no myeloma cells left in my body, what would be the purpose of maintenance therapy? BB knows this, hence the VRD that I'm on for at least another 28 months. If, in fact, this was a busted up piece of a monoclonal protein that wandered into the bloodstream, it's evidence of the need to continue maintenance, and it will get obliterated by the cocktail that I'm on, along with whatever cell created it. I will stick with the program, then! Onward!
Now the failure of my doctor to get me my labs is another story. My friend Sean, whom I met during transplants in Little Rock and whose unfailing good spirits and positivity are quite inspiring, noted that he goes to an infusion center that is not manned by a hematologist and they follow BB's orders to the letter. They draw blood, call Arkansas to confirm the counts and get approval for the velcade infusion, send the blood to Arkansas for further analysis and administer the velcade. That sounds like a good solution! Perhaps I will seek one of those places out.
By the way, Sean maintains a blog here.
Tuesday, April 20, 2010
Unsettling lab results, and GD exposed as a control-the-disease sheep in wolf's clothing!!
Argh.
Went to get my Velcade today, and to see GD for my once-a-month visit.
Very unsatisfying.
I asked to get my lab results. He said "everything looks fine" regarding the APRIL FREAKIN' FIFTH labs, which are now two weeks old. Except everything is NOT fine. There is a "faint lamba light chain" present under immunofixation.
Now, this doesn't mean anything, necessarily. I'm most likely still in remission (though I had to check in with BJ in Arkansas to get this information, rather than Dr. Numbnutz). He evidently didn't think it was worthwhile mentioning this to me. Which brings me to my first item in a list of how things are going to change. I am getting my damn labs every freaking week if I have to turn that damn place upside down. Otherwise I am going elsewhere. This is total BS.
Anyhow, after I pried this information out of him, I asked him if it was an indication that I had lost remission. He said it wasn't an indication of there being a monoclonal band, necessarily. An immunoglobulin has two long pieces, called heavy chains, and two small pieces, called light chains. One of these is a lambda light chain, and another is a kappa light chain.
There is a lamba light chain under immunofixation in my April 5th lab.
I wound up talking with Dr. GD for about 20 minutes, during which he said that he thinks people should try to control the disease, that he doesn't doubt that BB is curing people but that it's not that big a deal to have residual disease because a lot of people have it, and even if people live 20 years in remission is doesn't mean they are cured, blah blah blah.
In the words of The Bard: "this guy can go piss off!"*
All this time, I've been getting maintenance therapy (he believes it helps control the disease, but of course hadn't read the article in the Myeloma Beacon and doesn't know what a PCR test is) from some doddering bunghole who isn't with the program, doesn't feel the need to inform me when I've potentially lost remission, etc.
I contacted BJ, who told me that it could be part of an oligoclonal chain that was picked up and that she is highly doubtful that I have lost remission. Unfortunately, it says "monoclonal chain" right on the damn labs that this stupid buttpipe didn't see fit to tell me about for 15 freaking days.
ARGHHHH!!!
The reality is, I have probably not lost remission -- but 100% of the time that somebody loses remission, this is how it starts. So once again, my nerves are shot.
On the plus side, light chains in both urine and blood are normal, beta-2 microglobulin is normal, IgG is low, protein is normal, there no monoclonal protein under SPEP...plus I am on velcade, revlimid and dex in strong enough doses to kill whatever's left...plus I know I've got to stick with the program for another 30 months or so before I've killed the last of it off. So none of this should be alarming...although for somebody accustomed to not even thinking about the disease, it is jarring.
It also highlights some of my issues with Dr. GD, I suppose.
_____
*Note: This is not actually Shakespeare, thus making my comment a brilliant (and perhaps even sardonically irreverent, as Dr. Pearl might say?) joke.
Went to get my Velcade today, and to see GD for my once-a-month visit.
Very unsatisfying.
I asked to get my lab results. He said "everything looks fine" regarding the APRIL FREAKIN' FIFTH labs, which are now two weeks old. Except everything is NOT fine. There is a "faint lamba light chain" present under immunofixation.
Now, this doesn't mean anything, necessarily. I'm most likely still in remission (though I had to check in with BJ in Arkansas to get this information, rather than Dr. Numbnutz). He evidently didn't think it was worthwhile mentioning this to me. Which brings me to my first item in a list of how things are going to change. I am getting my damn labs every freaking week if I have to turn that damn place upside down. Otherwise I am going elsewhere. This is total BS.
Anyhow, after I pried this information out of him, I asked him if it was an indication that I had lost remission. He said it wasn't an indication of there being a monoclonal band, necessarily. An immunoglobulin has two long pieces, called heavy chains, and two small pieces, called light chains. One of these is a lambda light chain, and another is a kappa light chain.
There is a lamba light chain under immunofixation in my April 5th lab.
I wound up talking with Dr. GD for about 20 minutes, during which he said that he thinks people should try to control the disease, that he doesn't doubt that BB is curing people but that it's not that big a deal to have residual disease because a lot of people have it, and even if people live 20 years in remission is doesn't mean they are cured, blah blah blah.
In the words of The Bard: "this guy can go piss off!"*
All this time, I've been getting maintenance therapy (he believes it helps control the disease, but of course hadn't read the article in the Myeloma Beacon and doesn't know what a PCR test is) from some doddering bunghole who isn't with the program, doesn't feel the need to inform me when I've potentially lost remission, etc.
I contacted BJ, who told me that it could be part of an oligoclonal chain that was picked up and that she is highly doubtful that I have lost remission. Unfortunately, it says "monoclonal chain" right on the damn labs that this stupid buttpipe didn't see fit to tell me about for 15 freaking days.
ARGHHHH!!!
The reality is, I have probably not lost remission -- but 100% of the time that somebody loses remission, this is how it starts. So once again, my nerves are shot.
On the plus side, light chains in both urine and blood are normal, beta-2 microglobulin is normal, IgG is low, protein is normal, there no monoclonal protein under SPEP...plus I am on velcade, revlimid and dex in strong enough doses to kill whatever's left...plus I know I've got to stick with the program for another 30 months or so before I've killed the last of it off. So none of this should be alarming...although for somebody accustomed to not even thinking about the disease, it is jarring.
It also highlights some of my issues with Dr. GD, I suppose.
_____
*Note: This is not actually Shakespeare, thus making my comment a brilliant (and perhaps even sardonically irreverent, as Dr. Pearl might say?) joke.
Thursday, April 15, 2010
Addendums (end-ums?)
1. Taking Senna Wednesday night too late. Wednesday AM seems like good starting point for next time.
2. My jaw / teeth are not falling out of my head. That's good. Didn't want to end up like this poor guy.
http://img385.imageshack.us/i/425x353kz6.jpg/
I think that may be a still photo from a show I saw on the BBC entitled The Worst Teeth in Britain. It was almost impossible to watch but it was also one of the most entertaining hours of TV I've ever seen!
3. I underreported my platelet count the other day -- it's 133, which is good news. Sure to fall again now that I started Revlimid once more.
2. My jaw / teeth are not falling out of my head. That's good. Didn't want to end up like this poor guy.
http://img385.imageshack.us/i/425x353kz6.jpg/
I think that may be a still photo from a show I saw on the BBC entitled The Worst Teeth in Britain. It was almost impossible to watch but it was also one of the most entertaining hours of TV I've ever seen!
3. I underreported my platelet count the other day -- it's 133, which is good news. Sure to fall again now that I started Revlimid once more.
Wednesday, April 14, 2010
Fine-tuning maintenance...
I've decided that my haphazard trial and error with respect to Senna (anti-constipation med) is a failed strategy and I need to be more meticulous and recording what I'm doing.
An aside: doesn't "anti-constipation" sound much better than either "laxative" or "stool softener." Shudder.
Anyhow, I am formally noting for next time that starting Senna on Tuesday night is not a good idea. Next week I will try Wednesday AM instead.
In non-poop related news, the following tricks (mostly mentioned by people that follow this blog!) have been extremely helpful:
* Take Dex at night!!!! While counter intuitive, the drug doesn't kick in for several hours so if you take it at bedtime, you'll get a good five hours or so before you have issues.
* Over-the-counter magnesium supplements for the Revlimid-driven leg cramps. Mine has Zinc and some vitamin B in it as well. The stuff I am taking can be found here. I take three pills a night on the nights that I take Revlimid.
As for the rest of maintenance, I got another shot of testosterone yesterday (this time without a prostate exam -- I greatly preferred this time to the previous one!) I would say that there is a marginal increase in mojo.
It occurs to me that some blog followers (including those in my family) may not get the pop culture reference associated with my mojo-related comic relief photos. I'll have to explain it to you another time.
As my normal nurse is on vacation for a few weeks, I'm going to a hospital rather than the doctor's office for my velcade push. This experience made me feel thankful that I can normally do this in a doctor's office (MUCH less administrative hassle, much less time taken) and also made me realize how efficient Arkansas is. The efforts made to keep the room clean in Arkansas (e.g. wiping down the chairs with alcohol after after patient) and the efficiency with which labs are returned, etc. is pretty astounding by comparison to other facilities.
After a week off Revlimid, my counts looked pretty good! Some of this could be due to different labs, but my WBC was at 4.0, my platelets at around 115, and my HGB at 14! All good markers (relatively speaking).
I got rid of my cold -- FINALLY -- after about 20 days. The over/under is 10 days before I get another. Who's taking bets? :)
I did hear from another MM traveler that they get IVIG from BB in Arkansas, and that it enhances their ability to fend off colds and get over them quicker. I am starting to believe that BB knows more about this than my doubting oncologist in Encino, or perhaps even than the colleague of my primary care physician (who was less certain in her advice not to get the IVIG). We shall see. It will be a topic of conversation with Dr. GD when I see him next week, and with BB in May.
Lastly, there's something funky going on with my left ear.
There is an intermittent pulse -- like hearing a heartbeat there but much more rapid (up to 200 bpm) and variable. I asked my dear friend Dr. BM about this and he suggested trying a nasal decongestant spray so I'm gonna give that a shot and see what happens. I'm not concerned about it, but it's rather irritating and distracting.
That's it for now, folks.
An aside: doesn't "anti-constipation" sound much better than either "laxative" or "stool softener." Shudder.
Anyhow, I am formally noting for next time that starting Senna on Tuesday night is not a good idea. Next week I will try Wednesday AM instead.
In non-poop related news, the following tricks (mostly mentioned by people that follow this blog!) have been extremely helpful:
* Take Dex at night!!!! While counter intuitive, the drug doesn't kick in for several hours so if you take it at bedtime, you'll get a good five hours or so before you have issues.
* Over-the-counter magnesium supplements for the Revlimid-driven leg cramps. Mine has Zinc and some vitamin B in it as well. The stuff I am taking can be found here. I take three pills a night on the nights that I take Revlimid.
As for the rest of maintenance, I got another shot of testosterone yesterday (this time without a prostate exam -- I greatly preferred this time to the previous one!) I would say that there is a marginal increase in mojo.
It occurs to me that some blog followers (including those in my family) may not get the pop culture reference associated with my mojo-related comic relief photos. I'll have to explain it to you another time.
As my normal nurse is on vacation for a few weeks, I'm going to a hospital rather than the doctor's office for my velcade push. This experience made me feel thankful that I can normally do this in a doctor's office (MUCH less administrative hassle, much less time taken) and also made me realize how efficient Arkansas is. The efforts made to keep the room clean in Arkansas (e.g. wiping down the chairs with alcohol after after patient) and the efficiency with which labs are returned, etc. is pretty astounding by comparison to other facilities.
After a week off Revlimid, my counts looked pretty good! Some of this could be due to different labs, but my WBC was at 4.0, my platelets at around 115, and my HGB at 14! All good markers (relatively speaking).
I got rid of my cold -- FINALLY -- after about 20 days. The over/under is 10 days before I get another. Who's taking bets? :)
I did hear from another MM traveler that they get IVIG from BB in Arkansas, and that it enhances their ability to fend off colds and get over them quicker. I am starting to believe that BB knows more about this than my doubting oncologist in Encino, or perhaps even than the colleague of my primary care physician (who was less certain in her advice not to get the IVIG). We shall see. It will be a topic of conversation with Dr. GD when I see him next week, and with BB in May.
Lastly, there's something funky going on with my left ear.
That's it for now, folks.
Thursday, April 8, 2010
Platelets and WBC back up
Quick report on a few lab things.
This last Tuesday, platelets were up to 85 from 65 the week before. I went off Revlimid per my usual schedule on Monday, so they should continue to climb until I resume that particular wonderdrug on next Tuesday night.
WBC was up to 3.7, probably in response to this lingering chest cold which is down to about ten productive coughs a day and a few nose blows, so it's not that big a deal. Will be glad when it's gone. The over under on how long it takes me to get a new one is about two weeks. We'll see if I can beat that this time.
Everything else more or less steady as she goes.
I've got bad heartburn, despite taking Protonix, so I may pop another one. That's what's keeping me up. I was tired enough (long days at the office) to try to sleep last night without Ambien -- that was a mistake on the day after I took Dex. Oh well. More learnings for next month I suppose.
Feeling good, though, and with each day, more and more happy that I found BB and went through the aggressive treatment.
For those who might be new to this blog, I have a quick summary of some facts up on the blog of a friend, Phil Brabbs, who is a young guy that went for aggressive therapy in Michigan after meeting us in Arkansas. His protocol is slightly different and in some ways not quite the uber-aggresive approach that BB uses, but it nonetheless incorporates multiple chemo, a (single?) stem cell transplant and maintenance with the objective of curing the disease. Phil is an absolutely remarkable guy and we love his wife Cassie as well. They've been featuring other MM cases on their blog in an effort to educate people about various treatment options and experiences. I'm their guest for this week and my blurb can be found here.
This last Tuesday, platelets were up to 85 from 65 the week before. I went off Revlimid per my usual schedule on Monday, so they should continue to climb until I resume that particular wonderdrug on next Tuesday night.
WBC was up to 3.7, probably in response to this lingering chest cold which is down to about ten productive coughs a day and a few nose blows, so it's not that big a deal. Will be glad when it's gone. The over under on how long it takes me to get a new one is about two weeks. We'll see if I can beat that this time.
Everything else more or less steady as she goes.
I've got bad heartburn, despite taking Protonix, so I may pop another one. That's what's keeping me up. I was tired enough (long days at the office) to try to sleep last night without Ambien -- that was a mistake on the day after I took Dex. Oh well. More learnings for next month I suppose.
Feeling good, though, and with each day, more and more happy that I found BB and went through the aggressive treatment.
For those who might be new to this blog, I have a quick summary of some facts up on the blog of a friend, Phil Brabbs, who is a young guy that went for aggressive therapy in Michigan after meeting us in Arkansas. His protocol is slightly different and in some ways not quite the uber-aggresive approach that BB uses, but it nonetheless incorporates multiple chemo, a (single?) stem cell transplant and maintenance with the objective of curing the disease. Phil is an absolutely remarkable guy and we love his wife Cassie as well. They've been featuring other MM cases on their blog in an effort to educate people about various treatment options and experiences. I'm their guest for this week and my blurb can be found here.
Wednesday, April 7, 2010
Interesting news from the Myeloma Beacon
There are plenty of blogs out there that report new developments in traditional and alternative cancer therapy and research. My friend Pat Killingsworth has an excellent one here.
My blog normally doesn't do that, but in a response to the previous comment, "J" noted a recent (as in yesterday) article in the Myeloma Beacon that talked about how a test called a polymerase chain reaction or PCR can be used to detect residual cancer cells after a stem cell transplant, and this article is important enough to comment on.
The real point of the article, which can be found here, is that maintenance therapy with Velcade, Dex, and Thalidomide "may be effective in further reducing the number of tumor cells surviving in the marrow after ACST to levels only observed with allogeneic stem cell transplantations." That is: cure.
Here's where I point out that my original hematologist said, matter-of-factly, "I don't believe in maintenance therapy." He pointed out at the time that City of Hope did not, that MAYO did not, etc. I heard this from another doctor recently who thought it was "inconvenient" to take six months out of one's life for all this treatment and then be chained to a doctor's office weekly for three years. Meanwhile, BB has been honing maintenance therapy with these agents since 2003, and now uses Revlimid instead of Thalidomide which the article said could further improve the already clear benefits of maintenance therapy.
Fifteen months ago, hardly anybody was doing maintenance therapy. And now, we see that it probably saves lives. The world is coming around. BB is right.
Now, unfortunately, even BB's protocol only cures about 60% of patients -- that leaves a lot who need other therapies to beat the disease. And I remain heartened by the continued focus on developing new drugs for these and other MM sufferers.
My blog normally doesn't do that, but in a response to the previous comment, "J" noted a recent (as in yesterday) article in the Myeloma Beacon that talked about how a test called a polymerase chain reaction or PCR can be used to detect residual cancer cells after a stem cell transplant, and this article is important enough to comment on.
The real point of the article, which can be found here, is that maintenance therapy with Velcade, Dex, and Thalidomide "may be effective in further reducing the number of tumor cells surviving in the marrow after ACST to levels only observed with allogeneic stem cell transplantations." That is: cure.
Here's where I point out that my original hematologist said, matter-of-factly, "I don't believe in maintenance therapy." He pointed out at the time that City of Hope did not, that MAYO did not, etc. I heard this from another doctor recently who thought it was "inconvenient" to take six months out of one's life for all this treatment and then be chained to a doctor's office weekly for three years. Meanwhile, BB has been honing maintenance therapy with these agents since 2003, and now uses Revlimid instead of Thalidomide which the article said could further improve the already clear benefits of maintenance therapy.
Fifteen months ago, hardly anybody was doing maintenance therapy. And now, we see that it probably saves lives. The world is coming around. BB is right.
Now, unfortunately, even BB's protocol only cures about 60% of patients -- that leaves a lot who need other therapies to beat the disease. And I remain heartened by the continued focus on developing new drugs for these and other MM sufferers.
Tuesday, April 6, 2010
Hello to two new friends
Still sick here -- inconvenient but not the end of the world.
I received an wonderful email last night, passed on by my wife from my wonderful sister-in-law Gail. A friend of Gail's, with whom I spoke at some point during my treatment (I can't recall -- chemo brain?), evidently determined at some point to go to Arkansas for treatment. I thought I remembered from our conversation that this person wasn't necessarily going that route, but in any case, he evidently did.
Turns out this person was sharing a transplant room with another person, who was also familiar with my blog, and as a result of reading it had also determined to go to Arkansas. Let me say hello to them both now, if reading: GB and PD, I'm so glad to hear you took your treatment by the horns and are taking the fight to your MM. I wish you every success in your treatment and hope to meet you in LR (or elsewhere!) one of these days.
Without belaboring the point, I was sent a very touching note that credited me with saving PD's life. This is obviously not the case: BB is saving PD's life. But I'm extremely thankful for any minor role this blog may have played in helping PD make his treatment decision. Both PD and GB encouraged me to ensure this blog is published, and I am resolved to do so, and have taken steps but it's just so hard to find the time to finish the job! I will do so, though.
So PD and GB, keep up the fight, and thank you very much for your kind words!
As for me, I've still got the tail end of this chest cold but it's tolerable. My platelets fell to 65 last week, which was troubling. I took my last Revlimid last night, and we'll see what the platelets are today. It could have been an aberrant reading (but I doubt this as I've got several ugly bruises). In any case, we'll see what they are today. That was a fairly sudden drop -- they've held pretty closely between 100 and 120 this whole time and I'm not sure what the sudden fall would be due to. Whites remained at 2.8 -- despite the fact that I had a pretty bad cold when it was last checked -- and HGB around 12.7 still. Everything more or less where we want it to be, especially M protein under immunofixation which remains non-existent.
I received an wonderful email last night, passed on by my wife from my wonderful sister-in-law Gail. A friend of Gail's, with whom I spoke at some point during my treatment (I can't recall -- chemo brain?), evidently determined at some point to go to Arkansas for treatment. I thought I remembered from our conversation that this person wasn't necessarily going that route, but in any case, he evidently did.
Turns out this person was sharing a transplant room with another person, who was also familiar with my blog, and as a result of reading it had also determined to go to Arkansas. Let me say hello to them both now, if reading: GB and PD, I'm so glad to hear you took your treatment by the horns and are taking the fight to your MM. I wish you every success in your treatment and hope to meet you in LR (or elsewhere!) one of these days.
Without belaboring the point, I was sent a very touching note that credited me with saving PD's life. This is obviously not the case: BB is saving PD's life. But I'm extremely thankful for any minor role this blog may have played in helping PD make his treatment decision. Both PD and GB encouraged me to ensure this blog is published, and I am resolved to do so, and have taken steps but it's just so hard to find the time to finish the job! I will do so, though.
So PD and GB, keep up the fight, and thank you very much for your kind words!
As for me, I've still got the tail end of this chest cold but it's tolerable. My platelets fell to 65 last week, which was troubling. I took my last Revlimid last night, and we'll see what the platelets are today. It could have been an aberrant reading (but I doubt this as I've got several ugly bruises). In any case, we'll see what they are today. That was a fairly sudden drop -- they've held pretty closely between 100 and 120 this whole time and I'm not sure what the sudden fall would be due to. Whites remained at 2.8 -- despite the fact that I had a pretty bad cold when it was last checked -- and HGB around 12.7 still. Everything more or less where we want it to be, especially M protein under immunofixation which remains non-existent.
Thursday, March 25, 2010
I'm alive and (reasonably) well...just been buried at work! So an overdue update!
Hey there folks. Sorry to vanish on you for a bit -- I've been working 18 hours a day, 7 days a week basically for the last two weeks.
Medical highlights:
* I got over my chest-cold about two weeks ago. I also got rid of my thrush. I subsequently saw Dr. GD who said that he would NOT recommend I get IVIG, because my IgG at around 530 isn't low enough to benefit from it. He sent off a letter to BB asking him if he was sure I should get it. In the meantime, Dr. RZ (a colleague of my primary care physician) also said it wouldn't do any good at my current IgG level. So no IVIG after all that.
* May have been the wrong choice, and I am now sick again. This SUCKS. This is chest cold number five since September.
* I am bruising like a grape from low platelets. My platelets hover between 100 and 115 these days, with slight improvement when I'm off the Revlimid for a week. My white count is probably not going to see the sunny side of 3.0 again unless I dose-reduce the Revlimid. It's at 2.9 now, and that's not good given the need to get rid of these damn colds. I am armed with the strong antibiotic they gave me before (Augmentin) and am taking that as well as Tamiflu. We'll see what happens.
* I got a intramuscular shot of testosterone from a new guy, Dr. LB, who unlike the other urologist said intramuscular shots were highly effective and he gives them all the time. This should help with muscle wasting, energy and mojo. We'll see if I turn into Barry Bonds.
* I have been blessedly free from the horrible cramps-in-the-middle-of-the-night, more or less, since I started that supplement with magnesium and zinc. I did get two horrible ones this past Tuesday, thought. So maybe Velcade + Dex + Rev > Magnesium supplements. The only thing I might add to the cocktail would be potassium, so perhaps some raisins and a potato on Tuesdays might come in handy.
* I will be heading back to Arkansas in May for the next round of follow-up tests, and to see if I can get a balloon kyphoplasty to restore some height by "poofing up" the two mangled vertebrae. As for the test themselves, we'll be looking for continued healing of my bones. There was a lot of progress made from September to January, and I had one additional course of Zometa. I'm not sure if it will be this time, or next time, but sooner or later they will be healed and I will have, God willing, MRI Complete Remission which is a key next step in ensuring that I'm cured.
I'm sure I'm forgetting something, but I've got to jump back on this conference call. More to come, with a resumption of my long-overdue-charts, soon! Along with, perhaps, some kind of rendering of my backside (complete with marks for bone marrow biopsies) in response to a request from a fellow MM sufferer. :)
Medical highlights:
* I got over my chest-cold about two weeks ago. I also got rid of my thrush. I subsequently saw Dr. GD who said that he would NOT recommend I get IVIG, because my IgG at around 530 isn't low enough to benefit from it. He sent off a letter to BB asking him if he was sure I should get it. In the meantime, Dr. RZ (a colleague of my primary care physician) also said it wouldn't do any good at my current IgG level. So no IVIG after all that.
* May have been the wrong choice, and I am now sick again. This SUCKS. This is chest cold number five since September.
* I am bruising like a grape from low platelets. My platelets hover between 100 and 115 these days, with slight improvement when I'm off the Revlimid for a week. My white count is probably not going to see the sunny side of 3.0 again unless I dose-reduce the Revlimid. It's at 2.9 now, and that's not good given the need to get rid of these damn colds. I am armed with the strong antibiotic they gave me before (Augmentin) and am taking that as well as Tamiflu. We'll see what happens.
* I got a intramuscular shot of testosterone from a new guy, Dr. LB, who unlike the other urologist said intramuscular shots were highly effective and he gives them all the time. This should help with muscle wasting, energy and mojo. We'll see if I turn into Barry Bonds.
* I have been blessedly free from the horrible cramps-in-the-middle-of-the-night, more or less, since I started that supplement with magnesium and zinc. I did get two horrible ones this past Tuesday, thought. So maybe Velcade + Dex + Rev > Magnesium supplements. The only thing I might add to the cocktail would be potassium, so perhaps some raisins and a potato on Tuesdays might come in handy.
* I will be heading back to Arkansas in May for the next round of follow-up tests, and to see if I can get a balloon kyphoplasty to restore some height by "poofing up" the two mangled vertebrae. As for the test themselves, we'll be looking for continued healing of my bones. There was a lot of progress made from September to January, and I had one additional course of Zometa. I'm not sure if it will be this time, or next time, but sooner or later they will be healed and I will have, God willing, MRI Complete Remission which is a key next step in ensuring that I'm cured.
I'm sure I'm forgetting something, but I've got to jump back on this conference call. More to come, with a resumption of my long-overdue-charts, soon! Along with, perhaps, some kind of rendering of my backside (complete with marks for bone marrow biopsies) in response to a request from a fellow MM sufferer. :)
Friday, March 12, 2010
Bone marrow biopsy blemishes and IVIG update
Hello there folks!
Two unrelated little things, which we'll do in reverse order.
I will be getting IVIG a week from Tuesday, along with Velcade, both administered by Dr. G at UCLA's hospital. IVIG is evidently a money loser as an infusion unless it can be done in a hospital where other services are provided and charged for. I'll be getting my Velcade done then as well. The IVIG is a SIX HOUR infusion so it's gonna be a long, dull day for the kid.
I am off Revlimid this week, so I am not taking the magnesium supplements. So far, no leg cramps. I'll go back on them when I resume Revlimid on Tuesday. Hopefully my counts can recover a bit this week -- WBC, HGB and Platelets are all lower than I'd like.
Now, as for the dime-sized black spots on my butt, I figured it was time to do something about them or at least look into the situation. My first bone marrow biopsy was done by Dr. SH in Beverly Hills and it left no mark. Subsequent to that, between bone marrows and gene arrays and fine needle aspirates I have probably ten black spots on my butt. It's not the end of the world, but I also look (as I've said before) that I went hunting with Dick Cheney and he unloaded a bunch of buckshot in my backside.
The dermatologist told me there are pigmentation issues with these scars and prescribed a bleaching cream that can be used to touch them up. He also noticed there are indentations in these areas, which can be filled in. I thought I'd try to clear up the color first, since that sounded less invasive. So I bought some goop and we'll see if that does the trick. A thousand words will have to suffice in lieu of a picture, I'm afraid.
Closing this back around to Dr. G at UCLA, I spoke with him a bit about my therapy. He said that regardless of whether or not I was cured, I was in "a very good place." Now, he is a general Hem / Onc (probably less Hem than Onc) so he's not a Myeloma specialist per se, so frankly his opinion isn't worth all that much in terms of illuminating the nuances of my therapeutic choices and their ramifications. But it's all good at this point. I find myself checking the most recent slide from Arkansas that appeals:
This is probably a fairly easy chart to interpret. It shows compete remission duration over time for low-risk versus high-risk patients in the Total Therapy 3 trial. With five years of data now, 90% of low risk patients that achieve complete remission remain in complete remission five years later. And the curve is flat after about 40 months or so...that is, no patients lost remission after 40 months. Of the 209 patients that remained in remission at the 40 month period, all 209 patients are still in remission at 60 months. That's not coincidence. That's cure.
Which brings me to the following chart:
Fitting these to a regression curve, the cure fraction for low-risk patients that achieve complete response is 87.6%. And the farther one is out on that curve, the better the odds are.
Very good news for this sub-group of patients.
This chart, unfortunately, also points out the tremendous amount of work remaining to help those with genomically-defined high risk disease -- as well as those who lose remission despite having a low-risk signature. Fortunately new classes of drugs are coming out that will hopefully tell a much brighter story for Myeloma sufferers!
Two unrelated little things, which we'll do in reverse order.
I will be getting IVIG a week from Tuesday, along with Velcade, both administered by Dr. G at UCLA's hospital. IVIG is evidently a money loser as an infusion unless it can be done in a hospital where other services are provided and charged for. I'll be getting my Velcade done then as well. The IVIG is a SIX HOUR infusion so it's gonna be a long, dull day for the kid.
I am off Revlimid this week, so I am not taking the magnesium supplements. So far, no leg cramps. I'll go back on them when I resume Revlimid on Tuesday. Hopefully my counts can recover a bit this week -- WBC, HGB and Platelets are all lower than I'd like.
Now, as for the dime-sized black spots on my butt, I figured it was time to do something about them or at least look into the situation. My first bone marrow biopsy was done by Dr. SH in Beverly Hills and it left no mark. Subsequent to that, between bone marrows and gene arrays and fine needle aspirates I have probably ten black spots on my butt. It's not the end of the world, but I also look (as I've said before) that I went hunting with Dick Cheney and he unloaded a bunch of buckshot in my backside.
The dermatologist told me there are pigmentation issues with these scars and prescribed a bleaching cream that can be used to touch them up. He also noticed there are indentations in these areas, which can be filled in. I thought I'd try to clear up the color first, since that sounded less invasive. So I bought some goop and we'll see if that does the trick. A thousand words will have to suffice in lieu of a picture, I'm afraid.
Closing this back around to Dr. G at UCLA, I spoke with him a bit about my therapy. He said that regardless of whether or not I was cured, I was in "a very good place." Now, he is a general Hem / Onc (probably less Hem than Onc) so he's not a Myeloma specialist per se, so frankly his opinion isn't worth all that much in terms of illuminating the nuances of my therapeutic choices and their ramifications. But it's all good at this point. I find myself checking the most recent slide from Arkansas that appeals:
This is probably a fairly easy chart to interpret. It shows compete remission duration over time for low-risk versus high-risk patients in the Total Therapy 3 trial. With five years of data now, 90% of low risk patients that achieve complete remission remain in complete remission five years later. And the curve is flat after about 40 months or so...that is, no patients lost remission after 40 months. Of the 209 patients that remained in remission at the 40 month period, all 209 patients are still in remission at 60 months. That's not coincidence. That's cure.
Which brings me to the following chart:
Very good news for this sub-group of patients.
This chart, unfortunately, also points out the tremendous amount of work remaining to help those with genomically-defined high risk disease -- as well as those who lose remission despite having a low-risk signature. Fortunately new classes of drugs are coming out that will hopefully tell a much brighter story for Myeloma sufferers!
Monday, March 8, 2010
Feeling better, and some reflections...
Happy Monday, my friends.
First, thanks to those of you who were kind enough to write to check up on me!
I want to emphasize that when I report on feeling crummy, as I did at the end of last week, I am doing so in the interest of faithfully recounting what's going on so that others can learn. I am not complaining -- far from it. I'm glad to be alive and happy to accept the relatively minor side effects of maintenance therapy!
I was thinking about this, and one important notion occurred to me. I have been guilty, to some degree, of viewing the past seven months as the first seven months of maintenance, which is a three years process before I can say I'm through with therapy and (hopefully!) cured.
Instead, I should be viewing this as seven months, already, of disease free life. Had I opted for disease control rather than trying to go for a potentially curative approach, I might have a year or I might have three or I might have five years of remission. Nobody really knows. But seven months is seven months, and it's nothing to sneeze at, and I should be enjoying every day. I think this is a very important message. About 80% of the time, I'm living my life as though I don't have disease (which in fact I don't). The other 20% of the time I have to pop pills, get infusions, deal with side effects, whatever. But in any case, I'm in a group called "progression free survival" or "event free survival." So I should be enjoying every day -- and that's my message to all of you. Enjoy every day!!
For those interested, my chest cold is 98% gone. The thrush is, I *think* gone, and the GI distress is mostly gone although I'm sure I have been wiped clean of helpful digestive tract bacteria so I'm going to continue to pop acidophilus pills for a bit here.
I also wanted to touch briefly on an interview that Parade magazine did with Kathy Giusti of the MMRF. I have nothing but deep, deep respect and gratitude for this woman and her continuing efforts in the fight against this disease. But I have to say, the article was not very uplifting, despite assertions that it was. Among other things, Kathy said that "Myeloma is uniformly fatal." And she continues to focus on her own syngeneic transplant (from an identical twin, which confers the curative benefits of an allogeneic transplant without the risk of graft versus host disease) as being a temporary remission. In the case of the first statement, it's hard to view that as uplifting...I think it's defeatist and at least somewhat misleading. In the second case, I know she wants to maintain a sense of urgency to her efforts and I applaud that -- but I also hope she knows that she's going to be around for a long time.
Anyhow, that's enough rambling for today. Enjoy today, and every day, people!
First, thanks to those of you who were kind enough to write to check up on me!
I want to emphasize that when I report on feeling crummy, as I did at the end of last week, I am doing so in the interest of faithfully recounting what's going on so that others can learn. I am not complaining -- far from it. I'm glad to be alive and happy to accept the relatively minor side effects of maintenance therapy!
I was thinking about this, and one important notion occurred to me. I have been guilty, to some degree, of viewing the past seven months as the first seven months of maintenance, which is a three years process before I can say I'm through with therapy and (hopefully!) cured.
Instead, I should be viewing this as seven months, already, of disease free life. Had I opted for disease control rather than trying to go for a potentially curative approach, I might have a year or I might have three or I might have five years of remission. Nobody really knows. But seven months is seven months, and it's nothing to sneeze at, and I should be enjoying every day. I think this is a very important message. About 80% of the time, I'm living my life as though I don't have disease (which in fact I don't). The other 20% of the time I have to pop pills, get infusions, deal with side effects, whatever. But in any case, I'm in a group called "progression free survival" or "event free survival." So I should be enjoying every day -- and that's my message to all of you. Enjoy every day!!
For those interested, my chest cold is 98% gone. The thrush is, I *think* gone, and the GI distress is mostly gone although I'm sure I have been wiped clean of helpful digestive tract bacteria so I'm going to continue to pop acidophilus pills for a bit here.
I also wanted to touch briefly on an interview that Parade magazine did with Kathy Giusti of the MMRF. I have nothing but deep, deep respect and gratitude for this woman and her continuing efforts in the fight against this disease. But I have to say, the article was not very uplifting, despite assertions that it was. Among other things, Kathy said that "Myeloma is uniformly fatal." And she continues to focus on her own syngeneic transplant (from an identical twin, which confers the curative benefits of an allogeneic transplant without the risk of graft versus host disease) as being a temporary remission. In the case of the first statement, it's hard to view that as uplifting...I think it's defeatist and at least somewhat misleading. In the second case, I know she wants to maintain a sense of urgency to her efforts and I applaud that -- but I also hope she knows that she's going to be around for a long time.
Anyhow, that's enough rambling for today. Enjoy today, and every day, people!
Friday, March 5, 2010
Did somebody get the name of that bus...
Hello folks. I have been in gastro-intestinal hell for the last 36 hours. A hell-spawned conflagration of extremely spicy Thai food for dinner on Wednesday night (from which I may have gotten food poisoning) combined with, I am sure, my stomach being wiped clean of any helpful bacteria by the strong antibiotics I am taking to get rid of this chest cold (which is STILL not totally gone, though it is finally almost out of my system) plus the thrush plus the side effects of Dex (in this case, heartburn) plus the competing dynamics of Revlimid + Dex (constipation) and Senna (taken to combat this)...
Anyhow let's just say I was sicker yesterday than at any time since my transplants, and in some cases it was worse! It's been 36 hours and I am only now beginning to feel like myself again. Blecch!
I'm leaning towards getting IvIG next week now that most of my symptoms have gone from the outgoing cold. Hopefully that will ensure I don't get every little germ that blows through.
Have a good weekend, everyone!
P.S. Thanks to all for the tips on probiotics. I will be taking a few days' worth of acidophilus pills, and eating some yogurt, to help rebuild the good bacteria that's been wiped out by the Augmentin.
Anyhow let's just say I was sicker yesterday than at any time since my transplants, and in some cases it was worse! It's been 36 hours and I am only now beginning to feel like myself again. Blecch!
I'm leaning towards getting IvIG next week now that most of my symptoms have gone from the outgoing cold. Hopefully that will ensure I don't get every little germ that blows through.
Have a good weekend, everyone!
P.S. Thanks to all for the tips on probiotics. I will be taking a few days' worth of acidophilus pills, and eating some yogurt, to help rebuild the good bacteria that's been wiped out by the Augmentin.
Wednesday, March 3, 2010
Quick update
Chest cold is finally starting to resolve. My white count yesterday was at 4 -- a measly 4. That's basically below normal, and this in response to a lot of crud going on with me. So the Revlimid and Velcade are definitely leaving a mark, so to speak. Because GD's office doesn't do CRP, I can't cross reference white count against actual activity that should be driving it, so it may be that 4.0 isn't that big a deal and the real issue with me getting these colds is the low IgG (around 570 still, versus normal range of 700-1400 and my incredulous peak of 16,000!!!!! (over 90% of which was crappy monoclonal cancer).
As for the thrush, I'm rising my mouth with this hideous rotten tang called Nysantril or something like that. The docs here will know. I was swallowing it but then I realized the thrush is only in my mouth, so I'm rising around and spitting it out which makes it about 30% less awful. I have no idea if it is gone or not...will need to see the doctor soon on renewing my Lipitor (which is how this whole journey started in October of 2008). But I'm nearly finished.
Current plan is to try to get IVIG (which really, it seems to me, is IvIgG but whatever) next Tuesday. However I am so busy at work I haven't even had time to try to set up the appointment! In fact I've already delegated that to PinnacleCare, who are awesome, but I don't even have time to call them back!!
Work work work...
As for the thrush, I'm rising my mouth with this hideous rotten tang called Nysantril or something like that. The docs here will know. I was swallowing it but then I realized the thrush is only in my mouth, so I'm rising around and spitting it out which makes it about 30% less awful. I have no idea if it is gone or not...will need to see the doctor soon on renewing my Lipitor (which is how this whole journey started in October of 2008). But I'm nearly finished.
Current plan is to try to get IVIG (which really, it seems to me, is IvIgG but whatever) next Tuesday. However I am so busy at work I haven't even had time to try to set up the appointment! In fact I've already delegated that to PinnacleCare, who are awesome, but I don't even have time to call them back!!
Work work work...
Thursday, February 25, 2010
The ongoing saga of this chest-cold...
Tuesday night, when I returned from dinner, I felt pretty lousy. I realized I was running a fever. It was getting worse. I hadn't had a fever since I left treatment in Arkansas, and while it's probably nothing, people get very concerned about it when it gets up there and won't break. Fever is a common side effect of Velcade, although I've never had one from its administration and I'm six months into therapy with that stuff. Dex, as an anti-inflammatory, also reduces fever, so that is probably one of the reasons they use the two in tandem.
At any rate, my fever climbed from 99 degrees to 101.3. My poor little girl was so sad, because she knows I got the cold from her. I explained that everybody gets it, and I was glad I got it from her and not from somebody else, and that I would rather be around her and get sick than not be around her and not be sick. That made her feel a little better. I love her so much!
Anyhow, at 101 we call the 24-hour call number for Arkansas. It's around 10PM by now, but a doc from Arkansas calls back in a few minutes. He's 99% sure it's just a virus, but he wants me to take some tylenol to see if the fever will come down, and double up on my TamiFlu (which I had been doing), and take Augmentin (which I had been doing) and then get some blood cultures done as well as a respiratory viral culture.
The fever broke a couple of hours later, so I managed to avoid the hospital, but still felt awful. I felt a little better Wednesday morning and managed to get into the office of my primary care physician -- the wonderful man who found my disease early enough to put me in a good position to battle it -- yesterday afternoon. I met with his colleague since he was not around. She, like he, is an infectious disease specialist -- turns out she was incredibly helpful to speak with because she knows all about immunosuppressant treatment and the impact of that therapy, and what can be done to ameliorate it.
The first thing she said is that being on Dex once a week is the same thing as being on it constantly. My T cells are being killed by it. It actually, she thinks, has nothing to do with suppressing the IgG whatsoever -- it simply makes the system less able to fight the medicine that is used to suppress the IgG, and because of its anti-inflammatory properties is counteracts a lot of the side effects of Velcade. For example, fevers. She thought that if I were to discontinue dex, I would be much more likely to get fevers from the Velcade. She wondered if perhaps the recent increase in Velcade and the recent decrease in Dex could have resulted in the fever -- I told her that was an interesting theory but Occam's Razor* dictates that I got the fever from my daughter who had the same symptoms four days earlier.
She looked in my throat and told me I had thrush. Yuck. I remember thrush was one of the concerns in Arkansas during primary treatment -- they gave me Fluconazole to combat potential thrush. Some people, like my friend DP who maintains a blog elsewhere, were unlucky and got it -- it sounds awful. So I really didn't want any! I asked if I should go back on the Fluconazole and she recommended against that because that's hard on the liver (I remember this having an impact during therapy, though nothing serious) she recommended a mouthwash whose name escapes me. We'll try that for a couple of weeks and it should clear up, she thinks, and if not we'll go to the Fluconazole. She said that it was not yet severe, and that I will likely just need to do this quarterly while I am on the dex to keep it away.
She pointed out that TamiFlu is not effective against H1N1 if people have taken it prophylactically. So that answers that question. I'm not gonna take it any longer until I have a cold or flu that is flaring up. That will save money and be one less pill I have to take. She said that H1N1 will be back as it is making the rounds outside the US right now. She said that it's not seasonal, unlike the regular flu (regular flu season being over). I found this interesting and a little alarming, but I'm not a big "oh noes [sic] the end of the world is near!" H1N1 phobe.
She told me I should get the blood cultures done. I wanted to push for Tuesday, but she insisted they be done today, so I'm off to the infusion again this afternoon.
She also suggested that I go on prophylactic antibiotics. One she mentioned that was popular could decrease white count -- I told her that wouldn't work because the Revlimid is depressing my whites too much as it is, and she acknowledged that Myeloma docs generally don't like that particular drug. One cycle wasted on that conversation! :) She said there is another drug, however, that does not have that side-effect. She is going to call Arkansas, speak with either BB or Dr. EA, who is responsible for all supportive care, and make sure it's okay.
Meanwhile, I'm off to have blood cultures drawn this afternoon. The fever is gone, but the hacking cough remains. Ugh.
As for the IVIG, no point in getting that until I get over this. First, it won't make a difference at this point, and second, they want to be able to track my response to the IVIG, and some of that could be masked by flu-like symptoms so I want to make sure we know what's causing what.
And that, my friends, is all the news that's fit to print for the day. I still have those WBC charts to put up soon!!
*Occam's Razor. One of my favorite little ironies.
This is a critical element of logical thinking and an historical moment for reasoning in man's history. William of Occam came up with the simple maxim that the most obvious answer is the most likely one. For example, if there is smoke coming out of your house, the most likely answer is that it is on fire.
The irony, which I find hilarious but nobody else seems to laugh at, is that when this maxim was popularized, the most obvious answer to ANYTHING was "invisible gremlins did it."
"My horse just fell over dead." "Aha! Invisible gremlins did it." "However did you deduce that?" "Occam's Razor, my dear boy."
"My wife was drinking polluted water and now has the Plague." "Aha! Invisible gremlins did it!"
You see what I mean.
I can hear the peals of laughter coming in from all around cyberspace...
At any rate, my fever climbed from 99 degrees to 101.3. My poor little girl was so sad, because she knows I got the cold from her. I explained that everybody gets it, and I was glad I got it from her and not from somebody else, and that I would rather be around her and get sick than not be around her and not be sick. That made her feel a little better. I love her so much!
Anyhow, at 101 we call the 24-hour call number for Arkansas. It's around 10PM by now, but a doc from Arkansas calls back in a few minutes. He's 99% sure it's just a virus, but he wants me to take some tylenol to see if the fever will come down, and double up on my TamiFlu (which I had been doing), and take Augmentin (which I had been doing) and then get some blood cultures done as well as a respiratory viral culture.
The fever broke a couple of hours later, so I managed to avoid the hospital, but still felt awful. I felt a little better Wednesday morning and managed to get into the office of my primary care physician -- the wonderful man who found my disease early enough to put me in a good position to battle it -- yesterday afternoon. I met with his colleague since he was not around. She, like he, is an infectious disease specialist -- turns out she was incredibly helpful to speak with because she knows all about immunosuppressant treatment and the impact of that therapy, and what can be done to ameliorate it.
The first thing she said is that being on Dex once a week is the same thing as being on it constantly. My T cells are being killed by it. It actually, she thinks, has nothing to do with suppressing the IgG whatsoever -- it simply makes the system less able to fight the medicine that is used to suppress the IgG, and because of its anti-inflammatory properties is counteracts a lot of the side effects of Velcade. For example, fevers. She thought that if I were to discontinue dex, I would be much more likely to get fevers from the Velcade. She wondered if perhaps the recent increase in Velcade and the recent decrease in Dex could have resulted in the fever -- I told her that was an interesting theory but Occam's Razor* dictates that I got the fever from my daughter who had the same symptoms four days earlier.
She looked in my throat and told me I had thrush. Yuck. I remember thrush was one of the concerns in Arkansas during primary treatment -- they gave me Fluconazole to combat potential thrush. Some people, like my friend DP who maintains a blog elsewhere, were unlucky and got it -- it sounds awful. So I really didn't want any! I asked if I should go back on the Fluconazole and she recommended against that because that's hard on the liver (I remember this having an impact during therapy, though nothing serious) she recommended a mouthwash whose name escapes me. We'll try that for a couple of weeks and it should clear up, she thinks, and if not we'll go to the Fluconazole. She said that it was not yet severe, and that I will likely just need to do this quarterly while I am on the dex to keep it away.
She pointed out that TamiFlu is not effective against H1N1 if people have taken it prophylactically. So that answers that question. I'm not gonna take it any longer until I have a cold or flu that is flaring up. That will save money and be one less pill I have to take. She said that H1N1 will be back as it is making the rounds outside the US right now. She said that it's not seasonal, unlike the regular flu (regular flu season being over). I found this interesting and a little alarming, but I'm not a big "oh noes [sic] the end of the world is near!" H1N1 phobe.
She told me I should get the blood cultures done. I wanted to push for Tuesday, but she insisted they be done today, so I'm off to the infusion again this afternoon.
She also suggested that I go on prophylactic antibiotics. One she mentioned that was popular could decrease white count -- I told her that wouldn't work because the Revlimid is depressing my whites too much as it is, and she acknowledged that Myeloma docs generally don't like that particular drug. One cycle wasted on that conversation! :) She said there is another drug, however, that does not have that side-effect. She is going to call Arkansas, speak with either BB or Dr. EA, who is responsible for all supportive care, and make sure it's okay.
Meanwhile, I'm off to have blood cultures drawn this afternoon. The fever is gone, but the hacking cough remains. Ugh.
As for the IVIG, no point in getting that until I get over this. First, it won't make a difference at this point, and second, they want to be able to track my response to the IVIG, and some of that could be masked by flu-like symptoms so I want to make sure we know what's causing what.
And that, my friends, is all the news that's fit to print for the day. I still have those WBC charts to put up soon!!
*Occam's Razor. One of my favorite little ironies.
This is a critical element of logical thinking and an historical moment for reasoning in man's history. William of Occam came up with the simple maxim that the most obvious answer is the most likely one. For example, if there is smoke coming out of your house, the most likely answer is that it is on fire.
The irony, which I find hilarious but nobody else seems to laugh at, is that when this maxim was popularized, the most obvious answer to ANYTHING was "invisible gremlins did it."
"My horse just fell over dead." "Aha! Invisible gremlins did it." "However did you deduce that?" "Occam's Razor, my dear boy."
"My wife was drinking polluted water and now has the Plague." "Aha! Invisible gremlins did it!"
You see what I mean.
I can hear the peals of laughter coming in from all around cyberspace...
Tuesday, February 23, 2010
IVIG to the rescue?
Got a call from one of the nurses at Arkansas today. I think she must have called the house first and spoken with Jill, who probably reported that I'm have a problem with these stupid flus / colds.
The nurse told me she spoke with BB who proposed I get an infusion of immunoglobulin. Basically beef up IgG with some donor cells. I'm all for it -- we'll keep my crummy, wants-to-produce-myeloma IgG suppressed and help it out with some better IgG.
I think that means more time in the chair, and side effects including headache, etc. etc. but frankly I gotta stop getting these chest colds!!
I am thankful for their proactivity in reaching out to me and recommending this course of action. Not something Dr. GD would have done on his own, I don't think. I love the aggressive bias-to-action approach that BB embodies.
The nurse told me she spoke with BB who proposed I get an infusion of immunoglobulin. Basically beef up IgG with some donor cells. I'm all for it -- we'll keep my crummy, wants-to-produce-myeloma IgG suppressed and help it out with some better IgG.
I think that means more time in the chair, and side effects including headache, etc. etc. but frankly I gotta stop getting these chest colds!!
I am thankful for their proactivity in reaching out to me and recommending this course of action. Not something Dr. GD would have done on his own, I don't think. I love the aggressive bias-to-action approach that BB embodies.
Spoke too soon...
Lying on the couch watching some TV last night, all of a sudden a stabbing charlie horse in the bottom of my left foot. There must be something to being in a recumbent position that triggers these things because they don't happen when I'm walking around. Anyhow, I had potatoes with my dinner, had been drinking plenty of water, and have been on the Magnesium pills, so none of that is foolproof!
I will continue to monitor this and report back.
I will continue to monitor this and report back.
Sunday, February 21, 2010
Oh, and thanks to Sean J for the Magnesium tip!
FYI, I have been trying to keep hydrated and also take magnesium for the leg cramps...and so far, so good. A couple of false alarms last night, mostly because I wasn't fully hydrated (a few glasses of wine earlier in the evening, plus coming off Dex and peeing everything out, equals not that hydrated).
But I'm pleased to say I've been taking ZMA at the suggestion of my friend Sean. This contains Zinc, Magnesium and some Vitamin B. It's frequently used by bodybuilders to increase testosterone (need this!), rebuild muscle mass (need this) and whatever else...plus the Vitamin B will help combat neuropathy and the Magnesium -- so far, anyhow -- appears to be keeping the cramps away.
I'm keeping it up -- three big-ol horsepills every night. But so far, so good!
But I'm pleased to say I've been taking ZMA at the suggestion of my friend Sean. This contains Zinc, Magnesium and some Vitamin B. It's frequently used by bodybuilders to increase testosterone (need this!), rebuild muscle mass (need this) and whatever else...plus the Vitamin B will help combat neuropathy and the Magnesium -- so far, anyhow -- appears to be keeping the cramps away.
I'm keeping it up -- three big-ol horsepills every night. But so far, so good!
Sorry to drop off the face of the Earth!
Well, work has been very demanding for the last two weeks. It is good to be back and fully engaged, but it has been a constant stream of work from the moment I wake up to the moment I go to sleep for about two weeks now. Not so stressful as to induce illness -- I'm doing a good job of managing that. But it is certainly time consuming! So my apologies, dear readers, for not getting back on here sooner.
I think of my friend WB, who is done with induction and appears to be doing very well! I have that white blood count graph I've been meaning to post for two weeks now...forgive me, Bill, I'll get it there soon! And then I'll move on to electrolytes since you'll be going through your transplants soon and you'll want to see how that all shakes out!
Kathy Giusti of the MMRF lamented to me that she got every cold in the world when she was on Revlimid. I contrasted this with a person I met in Arkansas -- who was nice enough to buy the wife and me some lunch without knowing who we were, which was followed by a very nice conversation. That person said they never got sick any longer.
I am thinking both may be true. I am thinking that once I go off Revlimid, I might have a spiffy immune system. I also think, however, that Revlimid's purpose is to suppress the immune system and it does a damn good job because I HAVE MY THIRD CHEST COLD IN FOUR MONTHS and it's getting VERY, VERY OLD. I literally just got over the last one three weeks ago and I've got it again.
I am doubling up on Tamiflu and also taking Augmentin, which CR prescribed for me to knock out the bacterial aspects of the bronchitis. Seems to be helping. We'll see how long it takes me to get through this. On Tuesday I will get a look at my blood counts. My WBC was only 3.0 last Monday; pretty low! I wonder if it has spiked to get rid of what ails me?
More news this week, I promise. Be well everyone!
I think of my friend WB, who is done with induction and appears to be doing very well! I have that white blood count graph I've been meaning to post for two weeks now...forgive me, Bill, I'll get it there soon! And then I'll move on to electrolytes since you'll be going through your transplants soon and you'll want to see how that all shakes out!
Kathy Giusti of the MMRF lamented to me that she got every cold in the world when she was on Revlimid. I contrasted this with a person I met in Arkansas -- who was nice enough to buy the wife and me some lunch without knowing who we were, which was followed by a very nice conversation. That person said they never got sick any longer.
I am thinking both may be true. I am thinking that once I go off Revlimid, I might have a spiffy immune system. I also think, however, that Revlimid's purpose is to suppress the immune system and it does a damn good job because I HAVE MY THIRD CHEST COLD IN FOUR MONTHS and it's getting VERY, VERY OLD. I literally just got over the last one three weeks ago and I've got it again.
I am doubling up on Tamiflu and also taking Augmentin, which CR prescribed for me to knock out the bacterial aspects of the bronchitis. Seems to be helping. We'll see how long it takes me to get through this. On Tuesday I will get a look at my blood counts. My WBC was only 3.0 last Monday; pretty low! I wonder if it has spiked to get rid of what ails me?
More news this week, I promise. Be well everyone!
Wednesday, February 10, 2010
A quick response from BB on leg cramps.
I emailed him last night to tell him there's an error on his website (in one place it says Myeloma is not curable!) and I mentioned in passing the leg cramps. Now mind you, GD (who I do think is probably a good doctor) sort of fumfered* a bit and initial said nothing other than "sorry, can't give you quinine." With a bit of prodding suggested potassium. Then two minutes later added Magnesium.
Bart immediately told me to take Elavil, 25mg, nightly.
I did some research. It's another tricyclic antidepressant. I have avoided taking the Cymbalta that was prescribed for something else (I think neuropathy) and found another remedy that worked. I'm not depressed. If I was on both these things, I'd be a little loopy -- but probably really happy!
I'm not sure what I'm gonna do with this -- probably try potassium, magnesium and calcium supplements. My thighs hurt a smidge right now...could be from the dex, or the velcade, or even from the Zometa (but I doubt it as the pain was there before I got the Zometa yesterday). Nothing major but enough to make me wonder what's going on.
*My new favorite word.
Bart immediately told me to take Elavil, 25mg, nightly.
I did some research. It's another tricyclic antidepressant. I have avoided taking the Cymbalta that was prescribed for something else (I think neuropathy) and found another remedy that worked. I'm not depressed. If I was on both these things, I'd be a little loopy -- but probably really happy!
I'm not sure what I'm gonna do with this -- probably try potassium, magnesium and calcium supplements. My thighs hurt a smidge right now...could be from the dex, or the velcade, or even from the Zometa (but I doubt it as the pain was there before I got the Zometa yesterday). Nothing major but enough to make me wonder what's going on.
*My new favorite word.
Tuesday, February 9, 2010
Thin walls at GD's office...
Got my second infusion of Zometa today. Hopefully when I go back to Arkansas in May, all those bone lesions will be gone.
Velcade was upped to 2.5mg from the 2.0 that I was getting. It seems to me that this is slightly less than the 30% increase that BB wanted, however GD said it was the "maximum they could give." I explained that BB said he gave this to little old ladies, etc. GD was unmoved. Oh well. I'm sure a 25% increase will do the trick.
As most of you here suspected, the leg cramps are from the Revlimid and Velcade. I got some more last night. GD said that they sometimes prescribe quinine but that lowers platelets and mine are too low for that kinda stuff. I'm going to try potassium and magnesium supplements. I used to have magnesium tablets from way back when in the hospital in Arkansas, but I'm pretty sure I pitched them in an effort to reduce the size of the giant medicine sack that I've got under my sink. I may need to buy some more over-the-counter. As for potassium, it's back to potatoes, sounds like. We shall see what happens.
Other than all that -- and another fairly painful port access from the inept nurse -- it was pretty much business as usual. Except I heard through the wall a woman being counseled for her Myeloma. It was all I could do not to scream through the wall or try to knock it down. This woman has already been on other therapy but it hasn't done anything. So after consultation, they are going to start Velcade and Dex (what the hell was she on before? the mind boggles...could it possibly just have been prednisone?) No mention of Revlimid or Thalidomide. But after a while, with the minimal amount of Velcade and Dex, if she tolerates it (she was young, the doctor said) they will add Cytoxan.
I wanted to bang on the wall and scream.
Then I heard her say "I trust that what you're doing is the right thing" and I wanted to tear the wall down.
Oh well. None of my business.
I feel sorry for that woman. Even if one pursues a control-the-disease only approach, this mishmash of drugs isn't the best way to do that, seems like.
Velcade was upped to 2.5mg from the 2.0 that I was getting. It seems to me that this is slightly less than the 30% increase that BB wanted, however GD said it was the "maximum they could give." I explained that BB said he gave this to little old ladies, etc. GD was unmoved. Oh well. I'm sure a 25% increase will do the trick.
As most of you here suspected, the leg cramps are from the Revlimid and Velcade. I got some more last night. GD said that they sometimes prescribe quinine but that lowers platelets and mine are too low for that kinda stuff. I'm going to try potassium and magnesium supplements. I used to have magnesium tablets from way back when in the hospital in Arkansas, but I'm pretty sure I pitched them in an effort to reduce the size of the giant medicine sack that I've got under my sink. I may need to buy some more over-the-counter. As for potassium, it's back to potatoes, sounds like. We shall see what happens.
Other than all that -- and another fairly painful port access from the inept nurse -- it was pretty much business as usual. Except I heard through the wall a woman being counseled for her Myeloma. It was all I could do not to scream through the wall or try to knock it down. This woman has already been on other therapy but it hasn't done anything. So after consultation, they are going to start Velcade and Dex (what the hell was she on before? the mind boggles...could it possibly just have been prednisone?) No mention of Revlimid or Thalidomide. But after a while, with the minimal amount of Velcade and Dex, if she tolerates it (she was young, the doctor said) they will add Cytoxan.
I wanted to bang on the wall and scream.
Then I heard her say "I trust that what you're doing is the right thing" and I wanted to tear the wall down.
Oh well. None of my business.
I feel sorry for that woman. Even if one pursues a control-the-disease only approach, this mishmash of drugs isn't the best way to do that, seems like.
Wednesday, February 3, 2010
Two incidents of acute discomfort, or, OWWWWWWWWWW!!!!!!!!!! *!*#*!&*@**#!!!!!!! (and a Velcade schedule comment)
Hello folks.
Well, sadly the old portacath pains are back, entirely as a function of poor technique on the part of this nurse at GD's place. The great and painless nurse that quit assured me that her colleagues were capable, but they are not. I was searching for a comical descriptor..."merciless witch" was one that came to mind but she is too sweet to be called that. Likewise, "vicious, needle-wielding harpy" is also probably a little over the top. "Nurse with poor technique" is accurate but not very spunky as far as names go. C'est la vie.
Anyhow, accessing the interior portacath wasn't quite as bad as the searing, awful pain that it was three months ago but it certainly hurt like heck...kind of like somebody took an awl and shoved it into my chest half an inch. This was still hurting when I went to bed eight hours later.
It was not, however, hurting at 3AM. At 3AM, I woke up with a stabbing pain in my right calf. It was the worst cramp I'd ever experienced. I'd gotten a couple of these over the past week -- they are quite rare for me, thankfully. And I hadn't thought anything of them, and probably wouldn't have thought anything of this one. Except that at 3:01AM, this became only the SECOND worst cramp I'd ever experienced because I then got a cramp in my left calf, same basic place. These were very bad, people. I got up and found I couldn't put any weight on my legs.
After a minute I shuffled over to the computer and with the help of Wikipedia, ruled out deep vein thrombosis. So that's good. Unfortunately, neuropathy can be associated with these cramps.
Cramps, of course, could be a million other things including side-effects of my meds that have nothing to do with neuropathy. I am mindful of BB's admonition not to overanalyze myself.
Having said that, it's now almost three hours later and my legs are still sore.
Jill observed that I didn't have Velcade last week, so maybe my body just wasn't very happy about it. That's a possibility.
On that topic, I realize that I didn't cover off the issue of whether or not there are any breaks in the Velcade. Here's what BJ said: Velcade interferes with the testing, so no Velcade is given while in Arkansas. This equates to a break about every four months of one week.
In that week, I noticed that my red counts crept up (from 12.9 to 13.2, although this could be noise) and my white counts crept up (they were 3.8 two weeks ago and are at 4.2 now, ignoring the temporary spike to 4.8 in response to my cold). On that note, I have a lingering productive cough (say 10 times a day versus 200 times a day before the Augmentin). Hard to finish these things off with a depressed immune system!
White Blood Count graph is next, with special consideration for my new friend WB who started induction a couple of days ago and will likely be familiarizing himself with neutropenia soon. Hopefully it will reassure him to see the ebb and return of white counts in response to therapy.
Well, sadly the old portacath pains are back, entirely as a function of poor technique on the part of this nurse at GD's place. The great and painless nurse that quit assured me that her colleagues were capable, but they are not. I was searching for a comical descriptor..."merciless witch" was one that came to mind but she is too sweet to be called that. Likewise, "vicious, needle-wielding harpy" is also probably a little over the top. "Nurse with poor technique" is accurate but not very spunky as far as names go. C'est la vie.
Anyhow, accessing the interior portacath wasn't quite as bad as the searing, awful pain that it was three months ago but it certainly hurt like heck...kind of like somebody took an awl and shoved it into my chest half an inch. This was still hurting when I went to bed eight hours later.
It was not, however, hurting at 3AM. At 3AM, I woke up with a stabbing pain in my right calf. It was the worst cramp I'd ever experienced. I'd gotten a couple of these over the past week -- they are quite rare for me, thankfully. And I hadn't thought anything of them, and probably wouldn't have thought anything of this one. Except that at 3:01AM, this became only the SECOND worst cramp I'd ever experienced because I then got a cramp in my left calf, same basic place. These were very bad, people. I got up and found I couldn't put any weight on my legs.
After a minute I shuffled over to the computer and with the help of Wikipedia, ruled out deep vein thrombosis. So that's good. Unfortunately, neuropathy can be associated with these cramps.
Cramps, of course, could be a million other things including side-effects of my meds that have nothing to do with neuropathy. I am mindful of BB's admonition not to overanalyze myself.
Having said that, it's now almost three hours later and my legs are still sore.
Jill observed that I didn't have Velcade last week, so maybe my body just wasn't very happy about it. That's a possibility.
On that topic, I realize that I didn't cover off the issue of whether or not there are any breaks in the Velcade. Here's what BJ said: Velcade interferes with the testing, so no Velcade is given while in Arkansas. This equates to a break about every four months of one week.
In that week, I noticed that my red counts crept up (from 12.9 to 13.2, although this could be noise) and my white counts crept up (they were 3.8 two weeks ago and are at 4.2 now, ignoring the temporary spike to 4.8 in response to my cold). On that note, I have a lingering productive cough (say 10 times a day versus 200 times a day before the Augmentin). Hard to finish these things off with a depressed immune system!
White Blood Count graph is next, with special consideration for my new friend WB who started induction a couple of days ago and will likely be familiarizing himself with neutropenia soon. Hopefully it will reassure him to see the ebb and return of white counts in response to therapy.
Sunday, January 31, 2010
Graphs, first in a series: Monoclonal protein
Sorry to take so long with these, folks, but I've had to dig around for some of the data. Once I got to Arkansas I was pretty meticulous (with the help of my lovely wife) at keeping this data organized, but pre-Arkansas and sometimes in between treatment phases I was a little less consistent.
What I hope to do with these graphs is provide some useful information for patients going through therapy, as well as interesting data for the curious. If statistics aren't your thing, skip over the stuff. I'm erring on the side of providing more information rather than less.
The first graphs are of the monoclonal protein spike, the bad protein generated in my blood by the Myeloma. Most MM patients secrete this protein in their blood; some do not, however. This protein is an "immunoglobulin" that the immune system creates in response (or in preparation) for an invader in the system that needs to be killed off. Normal protein matches these immunoglobulins against specific invaders and there is a spectrum of diversified proteins in the blood to deal with the myriad invaders. Monoclonal protein is one specific protein that is replicated out of control, and it is useless to the immune system -- worse than useless, in fact, since it crowds out the useful stuff.
It was through observing an elevated total protein number in my routine labwork that my original primary care physician suspected something was wrong. The reason the total protein was elevated was because there was all this evil protein kicking around in my blood. It was about half the protein in my blood, in fact, at diagnosis.
These are all measured in grams per decileter, by the way.
The first graph shows the total protein over time from the "pre-diagnosis" draw at my hematologist -- a couple of weeks before the bone marrow confirmed that I had myeloma -- and has the dates of my various therapy treatments superimposed.
If you "doubleclick" on the graph, it will open in a bigger window so you can see it better, by the way.
This second graph focuses more closely on the treatment phase only -- this makes the trendline easier to observe.
This last graph is done on what is called a "log scale." For those not into statistics, let me try to explain briefly...traditionally graphs are shown on a linear scale. So if you are looking at the "Y Axis" (that's the vertical axis) and observing the amount of protein over time, the distance on that axis between 0 and 1 is the same as the difference between 1 and 2. On a "log scale" the distance is expanded so that smaller amounts don't get lost on the graph. The distance between .1 and 1 is the same size as the difference between 1 and 10! And the distance between .01 and .1 is the same as the distance between .1 and 1. This is probably easier to observe visually than read about.
This graph is useful for a couple of reasons. First, you can see the smaller measures more clearly. And second, you can observe the way the protein is reduced by therapy. It is reduced logarhythmically...which means it looks like a bit of a weird curve on the linear graphs above but actually appears linear -- that is, a pretty straight line over time -- on the log scale chart. I've superimposed a line here so you can see what I mean.
I realize that this last bit is probably overkill for most, so I apologize!!!
What I hope to do with these graphs is provide some useful information for patients going through therapy, as well as interesting data for the curious. If statistics aren't your thing, skip over the stuff. I'm erring on the side of providing more information rather than less.
The first graphs are of the monoclonal protein spike, the bad protein generated in my blood by the Myeloma. Most MM patients secrete this protein in their blood; some do not, however. This protein is an "immunoglobulin" that the immune system creates in response (or in preparation) for an invader in the system that needs to be killed off. Normal protein matches these immunoglobulins against specific invaders and there is a spectrum of diversified proteins in the blood to deal with the myriad invaders. Monoclonal protein is one specific protein that is replicated out of control, and it is useless to the immune system -- worse than useless, in fact, since it crowds out the useful stuff.
It was through observing an elevated total protein number in my routine labwork that my original primary care physician suspected something was wrong. The reason the total protein was elevated was because there was all this evil protein kicking around in my blood. It was about half the protein in my blood, in fact, at diagnosis.
These are all measured in grams per decileter, by the way.
The first graph shows the total protein over time from the "pre-diagnosis" draw at my hematologist -- a couple of weeks before the bone marrow confirmed that I had myeloma -- and has the dates of my various therapy treatments superimposed.
If you "doubleclick" on the graph, it will open in a bigger window so you can see it better, by the way.
This second graph focuses more closely on the treatment phase only -- this makes the trendline easier to observe.
This last graph is done on what is called a "log scale." For those not into statistics, let me try to explain briefly...traditionally graphs are shown on a linear scale. So if you are looking at the "Y Axis" (that's the vertical axis) and observing the amount of protein over time, the distance on that axis between 0 and 1 is the same as the difference between 1 and 2. On a "log scale" the distance is expanded so that smaller amounts don't get lost on the graph. The distance between .1 and 1 is the same size as the difference between 1 and 10! And the distance between .01 and .1 is the same as the distance between .1 and 1. This is probably easier to observe visually than read about.
This graph is useful for a couple of reasons. First, you can see the smaller measures more clearly. And second, you can observe the way the protein is reduced by therapy. It is reduced logarhythmically...which means it looks like a bit of a weird curve on the linear graphs above but actually appears linear -- that is, a pretty straight line over time -- on the log scale chart. I've superimposed a line here so you can see what I mean.
I realize that this last bit is probably overkill for most, so I apologize!!!
Thursday, January 28, 2010
Test results in, and the are GOOD!
Hello people.
Getting ready to depart Little Rock. It was a very successful little trip!
First, my test results, furnished rapidly, in detail, and without me having to ask for them.
* Blood:
- White count up to 4.52 (in response to my cold, which is going away with the help of Augmentin, a strong oral antibiotic)
- Hemoglobin is 12.9, a little on the low side but to be expected given the Revlimid
- Platelets at 116, same comment
- RDW is up at 14.4 and the abnormal red cells I noted are due to the Velcade; they are nothing to be concerned about
- Just started tracking CD4 helper T cells which are quite low (expected given the immunosuppressants I am on, this is normal)
- Blood chemistry is all good
- Lipitor is working: Cholesterol is 180, triglycerides 141!
* Cancer markers:
- B2M is 1.3, very good!
- "M protein cannot be detected at the level of sensitivity of serum protein electrophoresis." I.E. No M-spike whatsoever!
- Immunofixation negative: "the original IgG lamba M-protein is not present." First time I've seen this in Arkansas!
- Same results in urine -- no M protein to be found anyplace!
* Bone marrow "negative for plasma cell myeloma"!
- No M component!
- Plasma cells <5%
- Normal morphology with no abnormalities
- This makes four consecutive bone marrow pulls that have all been normal!!
* MRI
- All previously described focal lesions in spine have deceased in signal intensity and size, no new lesions detected
- In the pelvis, largest focal lesion has decreased to 2cm (this was once 5cm) and other focal lesions have gone away
- No focal lesions in the shoulders any longer
- Decreased focal lesion in the left clavicle (was 1cm, now 5mm)
* Bone density is "excellent."
Sum total of all this: sustained deep remission, bones rapidly healing, precisely what they want to see!
Next steps: another course of Zometa, some testosterone (BB overruling my urologist!), Velcade inceased to 1.3mg per m2, rather than 1, but Dex decrease from 20mg to 12mg! I'll take that tradeoff!
Re: the Velcade, which GD had said "I don't think can be increased," BB said "ridiculous, I give this to little old ladies, we used to do much more than this."
Reducing the dex will help me lose weight, get better sleep, and reduce muscle wasting -- all good.
Some Q&A with BB yielded some funny moments:
* He asked me how I felt. I told him "recent bloodwork shows abormal red blood cell morphology" to which he said "so you walk down the street, grab your side and say "oh sh*t, I am experiencing abormal red blood cell morphology!??? I said 'how do you feel?'" And I had to admit, I feel good, other than the dex making me tired and hungry. He noted that the Velcade "is in the bone marrow stirring sh*t up in there, the marrow is trying to keep up, you're going to have some weird cells as a result but this will pass once you are no longer on Velcade, and it's nothing to worry about in the meantime." He suggested I stop observing myself so closely! :) Probably good advice.
* I told him I wanted to see if I could get any of my height back. He thought this would be a good idea (not just for vanity, but also to ensure spine health, avoid pinched nerves, etc.) so I will have a consult with the expert when I'm here next. He called BJ to set this up and said "Nick van Dyk is interested in extending his extremity.....(long pause)...please call a urologist." :) He then amended this, of course. :)
* We are looking for MRI complete remission as the next step. I asked him if there was anything I should be looking for as a negative indicator. He cut me off. "You will be the first to know. I'm way ahead of you. I see data updated from all my patients every Thursday and I spent hours poring through every number looking for this stuff. I'm more obsessed with your disease even than you are!"
* He gave me an unpublished article from Blood (it will be published soon) that shows the cure signature for Total Therapy 3 dating back to 2003. 55% of newly diagnosed patients. 74% of newly diagnosed low risk patients. 87.6% of newly diagnosed low-risk patients that reach CR (this is my group, thankfully). I have mentioned before that I have the Proliferation Subtype(PR) of the disease, which is an unfavorable indicator. Only 11 of 230 people with the Proliferation Subtype have low-risk disease. It is not the dominant marker for me, but it's still there. And it confers, even in a low-risk setting, a worse outcome (this is in part why he is juicing the Velcade). However, once these patients achieve complete remission, 87% remain in complete remission two years later -- and that is for all patients (including high risk). He was able to show me low-risk patients that achieved complete remission with the PR subtype -- and every since one of them remains in complete remission four years out. In other words, achieving CR overcomes the negative attributes of the PR subtype.
All in all, could not have been a better series of results.
Next steps:
* Another course of Zometa to speed along bone healing
* Velcade up to 1.3mg
* Dex down to 12mg
* Depo-testosterone administered via intramuscular injection, not a pad
* Return visit in May for another PET, full body MRI, another bone marrow, bloodwork, and probably back surgery
We then had a lovely dinner with BJ and BB's wonderful wife Kathy (the good doctor himself was not able to make it as he had dinner with a candidate -- don't know if that meant a prospective patient or a prospective doctor). The warmth and genuine concern of these people is amazing. We are so fortunate to call them friends, and so fortunate that we found this place.
This week we spent a bit of time with WB, whom I spoke with on the phone a few weeks ago at the request of BJ, and WB's lovely wife S. WB is just entering the program, was randomized to the lite arm yesterday, and begins his journey today or tomorrow with induction. I see a lot of the same questions and concerns I had a year ago in him -- and as with my new friend JH (who himself had an outstanding consult here last week, and will be monitored before entering treatment as BB felt he was in no danger at this time) I feel really good to be able to "reach back through time" and talk with people that remind me a lot of where I was at the beginning of my own journey. So WB, if you're reading this, go get em!!! And JH, you've picked the right place, for whenever you decide to proceed.
They are curing people here -- in large percentages. Make no mistake.
Be well, everyone! Graphs will start coming soon, I promise!
Getting ready to depart Little Rock. It was a very successful little trip!
First, my test results, furnished rapidly, in detail, and without me having to ask for them.
* Blood:
- White count up to 4.52 (in response to my cold, which is going away with the help of Augmentin, a strong oral antibiotic)
- Hemoglobin is 12.9, a little on the low side but to be expected given the Revlimid
- Platelets at 116, same comment
- RDW is up at 14.4 and the abnormal red cells I noted are due to the Velcade; they are nothing to be concerned about
- Just started tracking CD4 helper T cells which are quite low (expected given the immunosuppressants I am on, this is normal)
- Blood chemistry is all good
- Lipitor is working: Cholesterol is 180, triglycerides 141!
* Cancer markers:
- B2M is 1.3, very good!
- "M protein cannot be detected at the level of sensitivity of serum protein electrophoresis." I.E. No M-spike whatsoever!
- Immunofixation negative: "the original IgG lamba M-protein is not present." First time I've seen this in Arkansas!
- Same results in urine -- no M protein to be found anyplace!
* Bone marrow "negative for plasma cell myeloma"!
- No M component!
- Plasma cells <5%
- Normal morphology with no abnormalities
- This makes four consecutive bone marrow pulls that have all been normal!!
* MRI
- All previously described focal lesions in spine have deceased in signal intensity and size, no new lesions detected
- In the pelvis, largest focal lesion has decreased to 2cm (this was once 5cm) and other focal lesions have gone away
- No focal lesions in the shoulders any longer
- Decreased focal lesion in the left clavicle (was 1cm, now 5mm)
* Bone density is "excellent."
Sum total of all this: sustained deep remission, bones rapidly healing, precisely what they want to see!
Next steps: another course of Zometa, some testosterone (BB overruling my urologist!), Velcade inceased to 1.3mg per m2, rather than 1, but Dex decrease from 20mg to 12mg! I'll take that tradeoff!
Re: the Velcade, which GD had said "I don't think can be increased," BB said "ridiculous, I give this to little old ladies, we used to do much more than this."
Reducing the dex will help me lose weight, get better sleep, and reduce muscle wasting -- all good.
Some Q&A with BB yielded some funny moments:
* He asked me how I felt. I told him "recent bloodwork shows abormal red blood cell morphology" to which he said "so you walk down the street, grab your side and say "oh sh*t, I am experiencing abormal red blood cell morphology!??? I said 'how do you feel?'" And I had to admit, I feel good, other than the dex making me tired and hungry. He noted that the Velcade "is in the bone marrow stirring sh*t up in there, the marrow is trying to keep up, you're going to have some weird cells as a result but this will pass once you are no longer on Velcade, and it's nothing to worry about in the meantime." He suggested I stop observing myself so closely! :) Probably good advice.
* I told him I wanted to see if I could get any of my height back. He thought this would be a good idea (not just for vanity, but also to ensure spine health, avoid pinched nerves, etc.) so I will have a consult with the expert when I'm here next. He called BJ to set this up and said "Nick van Dyk is interested in extending his extremity.....(long pause)...please call a urologist." :) He then amended this, of course. :)
* We are looking for MRI complete remission as the next step. I asked him if there was anything I should be looking for as a negative indicator. He cut me off. "You will be the first to know. I'm way ahead of you. I see data updated from all my patients every Thursday and I spent hours poring through every number looking for this stuff. I'm more obsessed with your disease even than you are!"
* He gave me an unpublished article from Blood (it will be published soon) that shows the cure signature for Total Therapy 3 dating back to 2003. 55% of newly diagnosed patients. 74% of newly diagnosed low risk patients. 87.6% of newly diagnosed low-risk patients that reach CR (this is my group, thankfully). I have mentioned before that I have the Proliferation Subtype(PR) of the disease, which is an unfavorable indicator. Only 11 of 230 people with the Proliferation Subtype have low-risk disease. It is not the dominant marker for me, but it's still there. And it confers, even in a low-risk setting, a worse outcome (this is in part why he is juicing the Velcade). However, once these patients achieve complete remission, 87% remain in complete remission two years later -- and that is for all patients (including high risk). He was able to show me low-risk patients that achieved complete remission with the PR subtype -- and every since one of them remains in complete remission four years out. In other words, achieving CR overcomes the negative attributes of the PR subtype.
All in all, could not have been a better series of results.
Next steps:
* Another course of Zometa to speed along bone healing
* Velcade up to 1.3mg
* Dex down to 12mg
* Depo-testosterone administered via intramuscular injection, not a pad
* Return visit in May for another PET, full body MRI, another bone marrow, bloodwork, and probably back surgery
We then had a lovely dinner with BJ and BB's wonderful wife Kathy (the good doctor himself was not able to make it as he had dinner with a candidate -- don't know if that meant a prospective patient or a prospective doctor). The warmth and genuine concern of these people is amazing. We are so fortunate to call them friends, and so fortunate that we found this place.
This week we spent a bit of time with WB, whom I spoke with on the phone a few weeks ago at the request of BJ, and WB's lovely wife S. WB is just entering the program, was randomized to the lite arm yesterday, and begins his journey today or tomorrow with induction. I see a lot of the same questions and concerns I had a year ago in him -- and as with my new friend JH (who himself had an outstanding consult here last week, and will be monitored before entering treatment as BB felt he was in no danger at this time) I feel really good to be able to "reach back through time" and talk with people that remind me a lot of where I was at the beginning of my own journey. So WB, if you're reading this, go get em!!! And JH, you've picked the right place, for whenever you decide to proceed.
They are curing people here -- in large percentages. Make no mistake.
Be well, everyone! Graphs will start coming soon, I promise!
Tuesday, January 26, 2010
Return to Arkansas, part 1...or I hope God has a good sense of humor!
Dateline: Little Rock.
Jill and I are in the Capitol Hotel, where we arrived on Sunday evening. It's about a year ago to the day that we came out here for testing and ultimately determined that this is where I would make my stand against Myeloma. Returning now, there's a nice almost nostalgic feeling to some of it. A few of the nurses recognize me, but many take a moment as I've got hair now. I've also put on weight, as too many have pointed out! They mean this as a complement, but I'm wary of the impact the dex continues to have on me. Nonetheless, considering how bad I looked when I had lost 40 pounds in the hospital, I'm taking their comments in the spirit they are intended: a return to health.
Yesterday they drew blood. I had arranged to have them use the portacath and so rather than go to the MIRT (the Myeloma clinic which is manned by people other than RNs, and who therefore cannot access the portacath) I scheduled the blood draw from the infusion center, which IS manned by RNs. For those who may not know, post-chemo it's hard to find a vein, and a "peripheral stick" (needle in the arm) is more of a nuisance than just accessing the port.
However, the best laid plans of mice and men (I just mistyped "best laid men of...") often go astray. They wanted to run a "clotting factor" test which would be effected by the heparin in the central line, so they had to go for the arm anyway. The first RN looked at my arm for a few minutes and couldn't find a vein. They called in support. Around this time I figured I would just demand they use the central line, which is what I found myself doing post transplant when I was just sick to death of needles. However, the support (a nurse named David) was a pro, found a vein, stuck it, and that was that.
We bumped into a new patient (BB, who I will call WB so as not to confuse him with Il Doctore) and his wife with whom I had spoken on the phone a few weeks ago. I have asked BJ, BB's faithful right-hand, to call on me as a resource to speak with potential patients and WB was one person that she thought could benefit from a conversation. I was happy to speak with him and happy to see him here, having gone through the same calculus that I did about a year ago before deciding Arkansas was the right place for me. I see a lot of me in him -- he's going through the same early-day frustrations (go from point A to point B to point C, not everybody is coordinated, lots of waiting, etc.) that I did. I marvel at how much patience this entire process has taught me!
On this note, I then met with a research nurse. Here's where things get a little confusing. I am on Velcade weekly as part of maintenance. Upon scheduling this return trip, I wanted to make sure that I would be administered Velcade on the Tuesday (today, as it happens). I had asked PinnacleCare to follow up on this. My rep at PinnacleCare spoke with a woman in scheduling here, who said that this was a planned week off from Velcade for me. That was news to me, but welcome news insofar as Velcade is responsible for that weird red blood cell morphology and my depressed white count and a little breather wouldn't be a bad idea. So long as it is on protocol -- I don't want to win a meaningless battle (red blood cell weirdness) only to lose the war (cancer returns).
The research nurse was surprised. Said there is no time off Velcade ever. Said the protocol requires weekly administration and the only time people are ever taken off it is if there is toxicity. Said she had no idea why anybody would tell me otherwise.
Okay, says I. No problem. I'm getting the portacath access tomorrow for the bone marrow. Just push some Velcade through it and we're done. Right?
Wrong. There could be contra-indications, evidently, between the conscious sedation and the Velcade, and they can't be given on the same day. I explained I'm not getting general anaesthesia -- it's a little Versed and a squirt of Propofol to keep me knocked out for ten minutes. She wasn't budging. I asked her to check. Jill pointed out that it is strange that, knowing this, they would have scheduled the bone marrow for a Tuesday. The nurse had nothing to say on that point.
Frustrating.
So we left, with the understanding that this nurse would check with BB and if it was okay, I would get my Velcade tomorrow, and if not, I would get it Wednesday. Evidently there is a +/- 1 day flexibility on this administration, which is good to know. Although I still need to get NEXT week's dose (Feb 2nd) done at Sloan Kettering in New York while there on business, which will pose a new logistical challenge and one that I am actually a little excited to undertake. One more little victory to be pulled off.
Later in the day on this point, a DIFFERENT nurse called and said there would be no Velcade because it was "too confusing" given the conscious sedation. WHAT?? I was dead asleep when they called or I'd have been more on top of it. This person said that the protocol allowed for me to skip a week. Also news.
This is the type of disorganization that might set BB off. I am confident that when I meet with him, we'll get to the bottom of it, and that worst case I'll get Velcade on Wednesday instead of today if I need it.
After the nurse consult, it was off for more tests. EKG. MRI. Bone densitometry. The last of these was the most interesting. Before talking about it, I will note that the MRI was a little briefer this time (only about an hour) and I popped an Ativan and slept through some of it. Good thing I am not claustrophobic as the last bit of it literally had my elbows and knees touching the inside of the machine, and the mask they fit over my face (think football helmet grille) was brushing my nose on one side. Tight quarters!
Anyhow, the bone densitometry was eye-opening. I saw the before and after of my vertebrae and confirmed that I have lost an inch of height. Most of this is from two vertebrae, each of which has lost about half an inch. I see the nice, square, ice-cube shaped lumbar vertebrae on the scan from a year ago, about one-and-a-half inches square, with a tiny little chip out of the upper right corner. Then there's the "after" shot where the thing is about 3/4" inch on one side tapering to about half an inch on the other and compressed all to hell.
It's a bummer. Particularly when the technician said "I can see where it was starting to go last time." You mean if they spoke better around here, they could have given me something that might have stopped it?
This really bums me out. Losing 10% of my vertebral height might seem like nothing but when I'm 5'8 to begin with, it makes a difference, and as I've remarked before all the guts are still there...they just push out more. This is mostly vanity, and my life has (hopefully) been saved so it's hard to complain, but it is discouraging to think that this could have been prevented had I taken more immediate action up-front. I'd have needed to begin treatment probably a month earlier than I did. Recall that my real sharp back pain, which was this vertebrae starting to go, happened only about a month after diagnosis, so I'm not sure how much could really have been done, but again, it's discouraging to think there wasn't enough talking going on here. I am reminded by Jill that there was a missing MRI that should have been done, as well, that would have caught this.
So let it not be said that this place is absolutely perfect.
However, it is where the irrepressible BB is saving lives, with increasing frequency. And I can't say enough about him or his people here.
I got a fair amount of work done in the afternoon and we got a bite to eat, after which we went by our old condo to say hello to the concierge. We noticed a BMW motorcycle parked in front of the restaurant there. BB's Ducati, I was reminded by Jill, doesn't start as well in the cold and it is quite cold here right now! When the concierge affirmed BB was there, we went over to say hi. He was having drinks with a colleague (another doctor in the clinic whom I had met with once) and did not see us come in.
I couldn't resist, and here's where I hope God has a good sense of humor.
Long-time readers may remember one doctor here who wears his religion and politics on his sleeve, and who allowed them to unprofessionally cross over into his clinical role with me. As BB is a scientific atheist, he has told me that he playfully mocks this other doctor (who I will call Dr. R in this entry). He has also pointed out that Dr. R is a very good man who has gone to great lengths to be helpful to BB personally, and I am sure this is the case. So this will be the last time he is the butt of a joke from my end of things (unless he crosses the line again).
Aware that BB had not seen us enter, I wrote a note for the waiter to bring to BB's table. It said "Dr. R is on the phone. He says he has seen Jesus in a potato chip. Will you take the call?"
We watched BB unfold the note and start laughing, then we went over and said hello. He's aware of the blog, which means some folks in the clinic must be reading: I LOVE YOU PEOPLE!! THANK YOU!!!!
Today there is more testing, and I'll get to the bottom of the Velcade thing sooner or later. And of course there's the hopeful news from my MRI (fewer / no lesions?) and bone marrow (no disease), etc. which I will dutifully report!
Jill and I are in the Capitol Hotel, where we arrived on Sunday evening. It's about a year ago to the day that we came out here for testing and ultimately determined that this is where I would make my stand against Myeloma. Returning now, there's a nice almost nostalgic feeling to some of it. A few of the nurses recognize me, but many take a moment as I've got hair now. I've also put on weight, as too many have pointed out! They mean this as a complement, but I'm wary of the impact the dex continues to have on me. Nonetheless, considering how bad I looked when I had lost 40 pounds in the hospital, I'm taking their comments in the spirit they are intended: a return to health.
Yesterday they drew blood. I had arranged to have them use the portacath and so rather than go to the MIRT (the Myeloma clinic which is manned by people other than RNs, and who therefore cannot access the portacath) I scheduled the blood draw from the infusion center, which IS manned by RNs. For those who may not know, post-chemo it's hard to find a vein, and a "peripheral stick" (needle in the arm) is more of a nuisance than just accessing the port.
However, the best laid plans of mice and men (I just mistyped "best laid men of...") often go astray. They wanted to run a "clotting factor" test which would be effected by the heparin in the central line, so they had to go for the arm anyway. The first RN looked at my arm for a few minutes and couldn't find a vein. They called in support. Around this time I figured I would just demand they use the central line, which is what I found myself doing post transplant when I was just sick to death of needles. However, the support (a nurse named David) was a pro, found a vein, stuck it, and that was that.
We bumped into a new patient (BB, who I will call WB so as not to confuse him with Il Doctore) and his wife with whom I had spoken on the phone a few weeks ago. I have asked BJ, BB's faithful right-hand, to call on me as a resource to speak with potential patients and WB was one person that she thought could benefit from a conversation. I was happy to speak with him and happy to see him here, having gone through the same calculus that I did about a year ago before deciding Arkansas was the right place for me. I see a lot of me in him -- he's going through the same early-day frustrations (go from point A to point B to point C, not everybody is coordinated, lots of waiting, etc.) that I did. I marvel at how much patience this entire process has taught me!
On this note, I then met with a research nurse. Here's where things get a little confusing. I am on Velcade weekly as part of maintenance. Upon scheduling this return trip, I wanted to make sure that I would be administered Velcade on the Tuesday (today, as it happens). I had asked PinnacleCare to follow up on this. My rep at PinnacleCare spoke with a woman in scheduling here, who said that this was a planned week off from Velcade for me. That was news to me, but welcome news insofar as Velcade is responsible for that weird red blood cell morphology and my depressed white count and a little breather wouldn't be a bad idea. So long as it is on protocol -- I don't want to win a meaningless battle (red blood cell weirdness) only to lose the war (cancer returns).
The research nurse was surprised. Said there is no time off Velcade ever. Said the protocol requires weekly administration and the only time people are ever taken off it is if there is toxicity. Said she had no idea why anybody would tell me otherwise.
Okay, says I. No problem. I'm getting the portacath access tomorrow for the bone marrow. Just push some Velcade through it and we're done. Right?
Wrong. There could be contra-indications, evidently, between the conscious sedation and the Velcade, and they can't be given on the same day. I explained I'm not getting general anaesthesia -- it's a little Versed and a squirt of Propofol to keep me knocked out for ten minutes. She wasn't budging. I asked her to check. Jill pointed out that it is strange that, knowing this, they would have scheduled the bone marrow for a Tuesday. The nurse had nothing to say on that point.
Frustrating.
So we left, with the understanding that this nurse would check with BB and if it was okay, I would get my Velcade tomorrow, and if not, I would get it Wednesday. Evidently there is a +/- 1 day flexibility on this administration, which is good to know. Although I still need to get NEXT week's dose (Feb 2nd) done at Sloan Kettering in New York while there on business, which will pose a new logistical challenge and one that I am actually a little excited to undertake. One more little victory to be pulled off.
Later in the day on this point, a DIFFERENT nurse called and said there would be no Velcade because it was "too confusing" given the conscious sedation. WHAT?? I was dead asleep when they called or I'd have been more on top of it. This person said that the protocol allowed for me to skip a week. Also news.
This is the type of disorganization that might set BB off. I am confident that when I meet with him, we'll get to the bottom of it, and that worst case I'll get Velcade on Wednesday instead of today if I need it.
After the nurse consult, it was off for more tests. EKG. MRI. Bone densitometry. The last of these was the most interesting. Before talking about it, I will note that the MRI was a little briefer this time (only about an hour) and I popped an Ativan and slept through some of it. Good thing I am not claustrophobic as the last bit of it literally had my elbows and knees touching the inside of the machine, and the mask they fit over my face (think football helmet grille) was brushing my nose on one side. Tight quarters!
Anyhow, the bone densitometry was eye-opening. I saw the before and after of my vertebrae and confirmed that I have lost an inch of height. Most of this is from two vertebrae, each of which has lost about half an inch. I see the nice, square, ice-cube shaped lumbar vertebrae on the scan from a year ago, about one-and-a-half inches square, with a tiny little chip out of the upper right corner. Then there's the "after" shot where the thing is about 3/4" inch on one side tapering to about half an inch on the other and compressed all to hell.
It's a bummer. Particularly when the technician said "I can see where it was starting to go last time." You mean if they spoke better around here, they could have given me something that might have stopped it?
This really bums me out. Losing 10% of my vertebral height might seem like nothing but when I'm 5'8 to begin with, it makes a difference, and as I've remarked before all the guts are still there...they just push out more. This is mostly vanity, and my life has (hopefully) been saved so it's hard to complain, but it is discouraging to think that this could have been prevented had I taken more immediate action up-front. I'd have needed to begin treatment probably a month earlier than I did. Recall that my real sharp back pain, which was this vertebrae starting to go, happened only about a month after diagnosis, so I'm not sure how much could really have been done, but again, it's discouraging to think there wasn't enough talking going on here. I am reminded by Jill that there was a missing MRI that should have been done, as well, that would have caught this.
So let it not be said that this place is absolutely perfect.
However, it is where the irrepressible BB is saving lives, with increasing frequency. And I can't say enough about him or his people here.
I got a fair amount of work done in the afternoon and we got a bite to eat, after which we went by our old condo to say hello to the concierge. We noticed a BMW motorcycle parked in front of the restaurant there. BB's Ducati, I was reminded by Jill, doesn't start as well in the cold and it is quite cold here right now! When the concierge affirmed BB was there, we went over to say hi. He was having drinks with a colleague (another doctor in the clinic whom I had met with once) and did not see us come in.
I couldn't resist, and here's where I hope God has a good sense of humor.
Long-time readers may remember one doctor here who wears his religion and politics on his sleeve, and who allowed them to unprofessionally cross over into his clinical role with me. As BB is a scientific atheist, he has told me that he playfully mocks this other doctor (who I will call Dr. R in this entry). He has also pointed out that Dr. R is a very good man who has gone to great lengths to be helpful to BB personally, and I am sure this is the case. So this will be the last time he is the butt of a joke from my end of things (unless he crosses the line again).
Aware that BB had not seen us enter, I wrote a note for the waiter to bring to BB's table. It said "Dr. R is on the phone. He says he has seen Jesus in a potato chip. Will you take the call?"
We watched BB unfold the note and start laughing, then we went over and said hello. He's aware of the blog, which means some folks in the clinic must be reading: I LOVE YOU PEOPLE!! THANK YOU!!!!
Today there is more testing, and I'll get to the bottom of the Velcade thing sooner or later. And of course there's the hopeful news from my MRI (fewer / no lesions?) and bone marrow (no disease), etc. which I will dutifully report!
Saturday, January 23, 2010
It really stinks having a cold with a suppressed immune response...
I've been up all night, coughing every fifteen minutes. Not quite as bad (in fact nowhere near as bad) as when I got out of the hospital last March and was coughing every two seconds. Just enough to ensure that I can't sleep.
It's 5AM...I got about 90 minutes of sleep. Didn't take Ambien...I'm tired enough, that's not the issue. It's the coughing. I took some of that Mucinex (remember the guy that looks like Pauly from Rocky? He's partying in my lungs with his friends) and it worked Thursday night, but not last night.
I continue to remind myself that my immune system isn't fixed yet. I need 32 more months of treatment before it's pronounced ready to return to prime time. I just hope those bones heal quickly so I can dose reduce!!!
It's 5AM...I got about 90 minutes of sleep. Didn't take Ambien...I'm tired enough, that's not the issue. It's the coughing. I took some of that Mucinex (remember the guy that looks like Pauly from Rocky? He's partying in my lungs with his friends) and it worked Thursday night, but not last night.
I continue to remind myself that my immune system isn't fixed yet. I need 32 more months of treatment before it's pronounced ready to return to prime time. I just hope those bones heal quickly so I can dose reduce!!!
Friday, January 22, 2010
Weird blood cells...
So in preparation for what's gonna be a really cool series (I hope) of graphs and charts on this blog I've been entering all my bloodwork data from Dr. GD's office. I went through PinnacleCare, my invaluable medical advocacy ally, to get these records since as I've noted before, GD's office isn't that good about getting them to me.
I saw a bunch of odd things that are probably nothing...but they do give me pause.
* A small number of atypical lymphocytes (i.e. abnormal white blood cells) in three blood draws over the last five weeks. There were none in the nine weeks before this.
* Odd red cell "morphology" over the past few weeks, including Anisocytosis (this is the technical term for the RDW figure -- meaning the variability in size is larger than one would expect) as well as Polychromsia, Pokilocytosis, Ovalocytes and Tear Drops -- I looked all these up on Wikipedia yesterday and they're all variations on abnormal red blood cells.
Are these the impact of Velcade and/or Revlimid? Probably. Are they irrelevant? Most likely. Do they make me nervous? Yes.
Anybody else have experience with these things?
All questions for BB since GD hasn't seen fit to draw my attention to them. I'm sure they are nothing but these people need to understand I want to be completely on top of things and know everything about my physiology, whether as a result of the disease or as a result of the treatment.
Meanwhile, the cold continues to make its way through my respiratory system. I'm also planning a short business trip to New York soon, which will put me there rather than in LA for a weekly Velcade administration. This will theoretically be done in the clinic of Dr. HL, who was going to be a consult of mine (dear God I almost typed "consort" my mistake!) about fourteen months ago, before I decided on BB. Yet there are logistical challenges...but I'll save that for a future report.
Have a good weekend, everybody!
I saw a bunch of odd things that are probably nothing...but they do give me pause.
* A small number of atypical lymphocytes (i.e. abnormal white blood cells) in three blood draws over the last five weeks. There were none in the nine weeks before this.
* Odd red cell "morphology" over the past few weeks, including Anisocytosis (this is the technical term for the RDW figure -- meaning the variability in size is larger than one would expect) as well as Polychromsia, Pokilocytosis, Ovalocytes and Tear Drops -- I looked all these up on Wikipedia yesterday and they're all variations on abnormal red blood cells.
Are these the impact of Velcade and/or Revlimid? Probably. Are they irrelevant? Most likely. Do they make me nervous? Yes.
Anybody else have experience with these things?
All questions for BB since GD hasn't seen fit to draw my attention to them. I'm sure they are nothing but these people need to understand I want to be completely on top of things and know everything about my physiology, whether as a result of the disease or as a result of the treatment.
Meanwhile, the cold continues to make its way through my respiratory system. I'm also planning a short business trip to New York soon, which will put me there rather than in LA for a weekly Velcade administration. This will theoretically be done in the clinic of Dr. HL, who was going to be a consult of mine (dear God I almost typed "consort" my mistake!) about fourteen months ago, before I decided on BB. Yet there are logistical challenges...but I'll save that for a future report.
Have a good weekend, everybody!
Wednesday, January 20, 2010
When it rains, it pours. Or: The Old Grey Mare. Or: Interesting numbers on Velcade.
We are getting a Old Testament-style storm in LA right now. In one sense it's good because the state needs precipitation. But it's REALLY dumping. And the ol' house is leaking. My beloved wine cellar has water all over the floor. Our den has water coming in. Our breakfast nook has a six foot by one foot strip of paint that has bubbled and is bursting. This was in an area where I paid to have the roof fixed. I'm concerned that we will have to have our dry wall torn out and replaced. We can ill afford this right now...but them's the breaks.
So the Old Grey Mare of the house ain't what she used to be. And neither is my immune system. My son got sick yesterday. Despite copious amounts of handwash, etc. I'm now sick. Readers may recall it took me three damn weeks to get over my cold last time...and that was with a healthy white count.
[ Editor's note: To be clear, while I kvetch a bit about the leaks here, my intent is to use the leaky house as a metaphor for my suboptimal immune system -- neither of them are what they used to be, hence the "Old Grey Mare" reference. Please don't think I'm being so petty as to complain about a leaky house on a blog dedicated to battling cancer, read by fellow cancer sufferers! ]
Which brings me to my next observation: yesterday's labs were good for platelets, which recovered to 148, and not so good for hemoglobin (12.0, now low) or whites (3.1, quite low). When combined with my immunglobulin (low, thank God!) it means I'm not gonna fight this illness very well.
Since I have been off revlimid for the week, and since platelets rebounded, I am beginning to believe the white and red suppression comes from Velcade (which I have stayed on). This is all part of the price to pay to eliminate the disease -- and indeed, unless one doesn't believe in maintenance therapy (and there are those that don't, though the number is less than it was even a year ago) one is likely to be on some combination of this stuff whether or not one goes for the aggressive / cure-it / Arkansas approach or a less aggressive control approach.
I'm hoping Tamiflu is enough. If not, evidently last time one of the clinicians in Arkanas (CR, for those following the blog...and the CR in this case doesn't stand for Complete Remission!) mentioned to the wife that he had something that would clear up my symptoms almost immediately. Of course this didn't occur until around day 17 of my 21 day cold. But *this* time I may give him a buzz earlier.
When I was at GD's office yesterday, once again they didn't give me lab results from a week ago. This is frustrating and I told them so. I'm building up to really letting them have it but I'll deal with that after I get back from next week's tests in Arkansas. The nurse who administers my Velcade (and she is pretty good at accessing the port, though it's more painful than the other nurse that used to do it) gave me a briefing she had gotten about a bunch of Velcade trials. She didn't understand most of it.
Anyhow, there's a trial called VISTA. It began in 2005. People treated with Melphalan and Prednisone were in one arm, people treated with these two plus Velcade were treated in another.
* 3-year overall survival was 72% for those with Velcade, 59% without.
* The median "treatment-free interval" was a whopping 16.6 months (I'm being sarcastic) with Velcade and 8.4 months without.
Translation: on Velcade and these other drugs alone, this disease kills a lot of people, and it comes back relatively quickly.
Not good enough. Hence Revlimid and Thalidomide, for one. Hence a stronger steroid, for another.
The same drugs that suppress my immune system. Hmm....
Pretty easy trade-off. Bring on the TheraFlu! :)
So the Old Grey Mare of the house ain't what she used to be. And neither is my immune system. My son got sick yesterday. Despite copious amounts of handwash, etc. I'm now sick. Readers may recall it took me three damn weeks to get over my cold last time...and that was with a healthy white count.
[ Editor's note: To be clear, while I kvetch a bit about the leaks here, my intent is to use the leaky house as a metaphor for my suboptimal immune system -- neither of them are what they used to be, hence the "Old Grey Mare" reference. Please don't think I'm being so petty as to complain about a leaky house on a blog dedicated to battling cancer, read by fellow cancer sufferers! ]
Which brings me to my next observation: yesterday's labs were good for platelets, which recovered to 148, and not so good for hemoglobin (12.0, now low) or whites (3.1, quite low). When combined with my immunglobulin (low, thank God!) it means I'm not gonna fight this illness very well.
Since I have been off revlimid for the week, and since platelets rebounded, I am beginning to believe the white and red suppression comes from Velcade (which I have stayed on). This is all part of the price to pay to eliminate the disease -- and indeed, unless one doesn't believe in maintenance therapy (and there are those that don't, though the number is less than it was even a year ago) one is likely to be on some combination of this stuff whether or not one goes for the aggressive / cure-it / Arkansas approach or a less aggressive control approach.
I'm hoping Tamiflu is enough. If not, evidently last time one of the clinicians in Arkanas (CR, for those following the blog...and the CR in this case doesn't stand for Complete Remission!) mentioned to the wife that he had something that would clear up my symptoms almost immediately. Of course this didn't occur until around day 17 of my 21 day cold. But *this* time I may give him a buzz earlier.
When I was at GD's office yesterday, once again they didn't give me lab results from a week ago. This is frustrating and I told them so. I'm building up to really letting them have it but I'll deal with that after I get back from next week's tests in Arkansas. The nurse who administers my Velcade (and she is pretty good at accessing the port, though it's more painful than the other nurse that used to do it) gave me a briefing she had gotten about a bunch of Velcade trials. She didn't understand most of it.
Anyhow, there's a trial called VISTA. It began in 2005. People treated with Melphalan and Prednisone were in one arm, people treated with these two plus Velcade were treated in another.
* 3-year overall survival was 72% for those with Velcade, 59% without.
* The median "treatment-free interval" was a whopping 16.6 months (I'm being sarcastic) with Velcade and 8.4 months without.
Translation: on Velcade and these other drugs alone, this disease kills a lot of people, and it comes back relatively quickly.
Not good enough. Hence Revlimid and Thalidomide, for one. Hence a stronger steroid, for another.
The same drugs that suppress my immune system. Hmm....
Pretty easy trade-off. Bring on the TheraFlu! :)
Wednesday, January 13, 2010
More phantom aches...
It's thankfully fading as I type this, but I awoke this morning with a dull pain (very minor, but I am attuned to these things) in my back. The ache is still there if I really focus on it -- it's about two inches to the left of my spine. I recall there being pains there during therapy, though I don't recall if it was the lesion or the vertebropasty that caused it.
Based on my conversation with GD yesterday, it seems unlikely that this is a recurrence. I remain immunofixation negative (although another test was done yesterday). And as GD points out, with recurrence, the pain generally worsens rather than goes away.
I am hopeful this can be dismissed with an MRI. I would prefer not to need to do another PET and God knows I don't want BB digging around with a Fine Needle Aspiration of these spots, which is probably where he will go with it. But if that's what is required, then I will submit to it.
More on this and other things of note as they develop.
Based on my conversation with GD yesterday, it seems unlikely that this is a recurrence. I remain immunofixation negative (although another test was done yesterday). And as GD points out, with recurrence, the pain generally worsens rather than goes away.
I am hopeful this can be dismissed with an MRI. I would prefer not to need to do another PET and God knows I don't want BB digging around with a Fine Needle Aspiration of these spots, which is probably where he will go with it. But if that's what is required, then I will submit to it.
More on this and other things of note as they develop.
Tuesday, January 12, 2010
Another day in GD's chair...
Hello folks.
Got my Velcade and a brief visit with GD today. Again, no review of my labs with me and I didn't get a copy. I will make an issue of this next time I see him -- today, he had laryngitis and between that and my rough day at the office I didn't feel like dealing with it.
I managed to see enough to note the following:
* White count is low at 3.7, but not alarmingly low.
* Hemoglobin is 12.7, again just a little low, but not alarmingly so.
* Platelets are back up to 96 after dipping to 89 last week.
I start my week off Revlimid today so these numbers should all have a chance to recover somewhat for next week. I noted to GD that I might discuss dose reduction with BB when I see him week after next, while also commenting that I know BB was considering INCREASING rather than decreasing my Velcade. I don't want to screw up the results of the therapy, since it has been successful. But I'd really like my counts a little higher if that's possible.
I also saw that RDW, that strange marker that I was so happy to see in the normal range, remains high at 14.6. Not crazy high, but high. I was going to ask GD about it...but then he didn't give me any time for questions and I know he'd probably just wave me off anyway. I'll ask BB about it instead.
We discussed my shoulder, which hasn't hurt in two weeks. GD did not think it was recurrence, since when recurrence happens the pain usually is persistent and doesn't go away, or if it does it comes back more sharply pretty quickly. He also didn't seem to think it would be from healing of the bones. The MRI should tell all -- and if it doesn't, I'm sure Bart will order a PET that I'd prefer not to need, all things being equal. We'll see what the MRI says. Hopefully the lesion is healed and that will take care of it. Then we can chalk it up to being over 40 and call it a day.
A number of people with whom I've spoken over the past weeks are headed to Arkansas for testing and potential treatment. If they are reading this, good luck and I hope to see you when I'm there!
Got my Velcade and a brief visit with GD today. Again, no review of my labs with me and I didn't get a copy. I will make an issue of this next time I see him -- today, he had laryngitis and between that and my rough day at the office I didn't feel like dealing with it.
I managed to see enough to note the following:
* White count is low at 3.7, but not alarmingly low.
* Hemoglobin is 12.7, again just a little low, but not alarmingly so.
* Platelets are back up to 96 after dipping to 89 last week.
I start my week off Revlimid today so these numbers should all have a chance to recover somewhat for next week. I noted to GD that I might discuss dose reduction with BB when I see him week after next, while also commenting that I know BB was considering INCREASING rather than decreasing my Velcade. I don't want to screw up the results of the therapy, since it has been successful. But I'd really like my counts a little higher if that's possible.
I also saw that RDW, that strange marker that I was so happy to see in the normal range, remains high at 14.6. Not crazy high, but high. I was going to ask GD about it...but then he didn't give me any time for questions and I know he'd probably just wave me off anyway. I'll ask BB about it instead.
We discussed my shoulder, which hasn't hurt in two weeks. GD did not think it was recurrence, since when recurrence happens the pain usually is persistent and doesn't go away, or if it does it comes back more sharply pretty quickly. He also didn't seem to think it would be from healing of the bones. The MRI should tell all -- and if it doesn't, I'm sure Bart will order a PET that I'd prefer not to need, all things being equal. We'll see what the MRI says. Hopefully the lesion is healed and that will take care of it. Then we can chalk it up to being over 40 and call it a day.
A number of people with whom I've spoken over the past weeks are headed to Arkansas for testing and potential treatment. If they are reading this, good luck and I hope to see you when I'm there!
Monday, January 4, 2010
Immunofixation negative still...but what about the shoulder?
Okay, so I managed to PRY out of the people at GD's office that my test as of 12/22 was still immunofixation negative, so that's good.
So what's with the faint dull pain in the shoulder? Could this be bone healing? God I hope so! We'll see how things go.
I head back there tomorrow (GD's office) for my weekly infusion. The nice nurse Denise who has gotten good at port access and hasn't hurt me is moving on, unfortunately. So I am now in the hands of her peers. Hopefully they are good at not inflicting pain!! :)
So what's with the faint dull pain in the shoulder? Could this be bone healing? God I hope so! We'll see how things go.
I head back there tomorrow (GD's office) for my weekly infusion. The nice nurse Denise who has gotten good at port access and hasn't hurt me is moving on, unfortunately. So I am now in the hands of her peers. Hopefully they are good at not inflicting pain!! :)
A pain in the shoulder...
Well, it's a sleepless night, not due to the dex.
I played an atypically bad round of golf on my last day off for the holidays. I made the mistake of taking a few lessons from a golf pro and he ruined about three years of work. I'm not happy. If I spent as much time, money and effort at ANYTHING as I do at golf, I would be so good at whatever activity that is by now...
More troubling, though, is the dull pain in my left shoulder. I recall that it was a sharp pain in my left shoulder that was my first sign that anything was wrong with me, back in October of 2008. There is something going on on the shoulder...nothing all that painful but there's something there, and it doesn't feel like muscle. It feels like bone.
Add to this that I'm still in limbo as to the last immunofixation test and it makes for a restless evening.
I'm (almost) certain that I'm still at zero M protein, and that I'm still in complete remission, and that whatever discomfort I feel is simply because the bone hasn't healed 100% yet. And yet it's a reminder that all is still not completely well.
I hope it goes away -- because if it doesn't, I know that I'll be in for fine needle aspirations and other PET down in Arkansas, even if it's just to prove a point that there's nothing there. The MRI might show that it's gone (in which case I don't know what I'm feeling) but if it doesn't, it won't show avidity in the lesion (i.e. are there cancer cells "doing the Watusi" as BJ once said). We need another PET for that.
Anyhow, in a few hours when they open, I will call GD's office and tell him I want my GD test results, and we'll take it from there.
In other news, I spoke this evening with a nice young woman from South Carolina whose father was recently diagnosed. I'm trying to toe the line between being an impartial advisor/resource and being an evangelist for Arkansas, but the most important thing is this is another example of the usefulness of this blog and I'm so appreciative of the opportunity to talk with newly diagnosed patients to help them navigate their choices.
Happy New Year to you all...I will get to those lab results this week as they are pretty interesting.
I played an atypically bad round of golf on my last day off for the holidays. I made the mistake of taking a few lessons from a golf pro and he ruined about three years of work. I'm not happy. If I spent as much time, money and effort at ANYTHING as I do at golf, I would be so good at whatever activity that is by now...
More troubling, though, is the dull pain in my left shoulder. I recall that it was a sharp pain in my left shoulder that was my first sign that anything was wrong with me, back in October of 2008. There is something going on on the shoulder...nothing all that painful but there's something there, and it doesn't feel like muscle. It feels like bone.
Add to this that I'm still in limbo as to the last immunofixation test and it makes for a restless evening.
I'm (almost) certain that I'm still at zero M protein, and that I'm still in complete remission, and that whatever discomfort I feel is simply because the bone hasn't healed 100% yet. And yet it's a reminder that all is still not completely well.
I hope it goes away -- because if it doesn't, I know that I'll be in for fine needle aspirations and other PET down in Arkansas, even if it's just to prove a point that there's nothing there. The MRI might show that it's gone (in which case I don't know what I'm feeling) but if it doesn't, it won't show avidity in the lesion (i.e. are there cancer cells "doing the Watusi" as BJ once said). We need another PET for that.
Anyhow, in a few hours when they open, I will call GD's office and tell him I want my GD test results, and we'll take it from there.
In other news, I spoke this evening with a nice young woman from South Carolina whose father was recently diagnosed. I'm trying to toe the line between being an impartial advisor/resource and being an evangelist for Arkansas, but the most important thing is this is another example of the usefulness of this blog and I'm so appreciative of the opportunity to talk with newly diagnosed patients to help them navigate their choices.
Happy New Year to you all...I will get to those lab results this week as they are pretty interesting.
Subscribe to:
Posts (Atom)
