Tuesday, July 17, 2012
Mini update
Today began with somebody wanting to do a punch biopsy on one of the lesions on the back of my right hand, which they have already scraped for pathology three times. I finally put my foot down and said I would be happy to submit but only after I understood why. I have been sitting here for almost two days now with an IV full of antibiotics and antivirals that have done nothing. The lesions have now shown up on my feet as well as my hands. They look like red dots that range from a pinprick to maybe 3mm in diameter.
My beloved Dr. PZ came by. He said he concurred with RV and the folks in Arkansas that it was likely vasculitis. In his very calm way (this is, after all, the guy that said "myeloma is a malignancy of the blood" four years ago) he said that vasculitis was an autoimmune disorder that was usually treated with steroids. The pattern of lesions doesn't match viral presentation, evidently. He explained the biopsy would affirm the vasculitis if it was positive. So I submitted.
As for the biopsy itself, the lidocaine shot hurt quite a bit for a few seconds, and the biopsy itself was painless. They put a couple of stitches in as with my low platelets and unpredictable healing capabilities it was bleeding pretty profusely.
My question, now, is this: what else could it be, and why not treat for vasculitis at this point so I can start getting better?
The treatment for vasculitis is steroids (prednisone, which is about one fifth the strength of my not-so-beloved Dex). That much I can handle. If it doesn't respond to steroids, the treatment is Cytoxan, aka Cyclophosphomide, aka the C of the VTD-PACE chemo regimen that I have already had twice.
I do not want more Cytoxan. I do not want it, Sam I Am.
I do not want it on a train, I do not want I on a plane. I do not want it in a house, I do not want it with a mouse. I do not want it in my arm, I am concerned that I will harm. I rather like this hair of mine, it will not help repair my spine.
Etc.
Monday, July 16, 2012
"Fingles"...or "The Myeloma Dream Team"...or "Another Triumph for Self-Diagnosis"...or simply "OUCH"
Well, where to begin.
I guess the place to begin with is...it wasn't peripheral neuropathy.
I suppose I should feel good about that...I was already concerned that it was very painful and wasn't going away and would impact my ability to play golf, guitar, piano...or even type. My pecking away right now is pretty uncomfortable, actually.
But as it happens, I am typing this from a hospital bed at Cedars Sinai.
I went golfing Sunday morning and it was exceedingly difficult to play. While I normally welcome an excuse, it really hurt like hell. I had to pop several Vicodin to make it through the round, which I don't like to do either.
But it was after the round of golf that the trouble began in earnest. We went to a birthday party for the adorable little 4 year old daughter of our dear friends and Jill noticed discoloration on my fingers. A little bell rang in my head. You see, every month that goes by, I get a new bottle of Revlimid and I have to answer a new questionnaire about the drug and its side effects. And one of these side effects is called Stevens Johnson Syndrome, which is rare but potentially life threatening and starts with a discoloration or rash on the skin.
A quick google search lent just enough credibility to this (the photos looked worse but not a LOT worse than my fingers) so we sped off to the ER.
To make a long story short, I have been here 24 hours now, they have pumped me full of antibiotics and antivirals. They have taken blood multiple times, urine, and goop from one of the blisters on my fingers (cue Ringo Starr). They have come into the room every ten minutes, just about, making sleep difficult but I appreciate their attentiveness. I have had an EKG and a chest x-ray, I am scheduled for an echocardiogram, and they keep threatening a biopsy of some kind or another.
But nobody will tell me what I have or don't. They won't even rule out Stevens Johnson yet. I have been visited by three doctors on staff here, plus RZ who is an infectious disease specialist and the colleague of doctor PZ, who diagnosed me. I like RZ. She knows her stuff. And when pressed, she thinks it is unlikely that it is Stevens Johnson -- that is at least SOMETHING to hang my hat on.
But it is not satisfactory. I would like to know what the heck is going on and when it takes 12 hours to get a red blood count out of these folks, the blood cultures are going to take too long. Meanwhile I have no idea how serious this is...
I told the folks I wanted a Myeloma specialist to look, since they might have experience seeing this as a side effect of Revlimid. I suggested RV, who is on staff here and is excellent...even though i have never seen him and having him come by to check out a skin condition that is a possible side effect of treatment is overkill, like having Wolfgang Puck make a sandwich for you. But i think he is the best on staff here, so why not ask, right?
The other thing i did was send a picture to the awesome folks from Arkansas.
Thirty minutes later, the Arkansas opinion is that it is vasculitis. As we were looking that up, RV came by and he said that he had never seen this type of reaction, but it could be vasculitis.
That sounds like a convergence of a diagnosis. If true, it means all the antivirals and antibiotics aren't gonna to squat.
RV explained vasculitis is when the immune system identifies one's own veins as invaders and tries to destroy them. Doesn't sound like fun. DOES sound like something Revlimid can do. DOES sound like something my poor tweaked immune system could do.
The treatment is steroids (yuck) and Cytoxan (double yuck).
I guess the next step is to confirm this is what's going on...no clue how to do that yet, although I have asked that RZ speak with one of the folks in Arkansas. At some point, somebody will come back in here and I will ensure they are continuing to pursue this line of thinking.
I felt so good three days ago...this really sucks! And yet, I am always mindful of how fortunate I am. For example, today I had two of the top ten MM doctors in the country weighing in on this. My primary care physician is one of the leaders in infectious disease (every doctor is still amazed that he is my PCP). And I was educated at UAMS to be an empowered and informed patient, asking questions and offering opinions. I am thankful for all of that. And thankful for Jill, who slept in a cot by my side last night.
So...here's to caregivers and the medical community! And to being thankful for what we have. And for an end, soon I hope, to this hospital stay.
More news as events merit.
Saturday, July 14, 2012
New Ropathy
Well, this stinks.
Three years into therapy I'd never had more than a tiny tingling in my toes. This would go away nearly as soon as it came, so I figured I was just lucky. I had told BB about this and he surmised that some people are physiologically disposed to neuropathy, while others are not. So when I had a little bit in my feet, I figured it would go away, and all would be well.
Well, I've got it pretty bad in my fingers today and it's terrible.
I had noticed trouble in my right thumb after the surgery to remove the carcinoma on my right index finger. The doctor thought it was a dressing wrapped too tight that impinged a nerve. Even then, though, it felt a little numb but not painful.
Yesterday, I banged my thumb against a large binder on my desk. It hurt last night but even then, I assumed it was just sore from banging it.
Now, both thumbs actively hurt and I can't use a remote control for fear of too much pain. Both index fingers are the same. The rest of the hands are okay for the moment, so I know it's the one nerve in each hand that affects both the thumb and forefinger.
This is very disconcerting...it's actually quite painful.
We'll see how this goes.
Three years into therapy I'd never had more than a tiny tingling in my toes. This would go away nearly as soon as it came, so I figured I was just lucky. I had told BB about this and he surmised that some people are physiologically disposed to neuropathy, while others are not. So when I had a little bit in my feet, I figured it would go away, and all would be well.
Well, I've got it pretty bad in my fingers today and it's terrible.
I had noticed trouble in my right thumb after the surgery to remove the carcinoma on my right index finger. The doctor thought it was a dressing wrapped too tight that impinged a nerve. Even then, though, it felt a little numb but not painful.
Yesterday, I banged my thumb against a large binder on my desk. It hurt last night but even then, I assumed it was just sore from banging it.
Now, both thumbs actively hurt and I can't use a remote control for fear of too much pain. Both index fingers are the same. The rest of the hands are okay for the moment, so I know it's the one nerve in each hand that affects both the thumb and forefinger.
This is very disconcerting...it's actually quite painful.
We'll see how this goes.
Friday, July 13, 2012
My "Tough love" interview with CureTalk
Hi folks. Hope you are all well.
Not so much an update, but I did want to let you know that I was recently interviewed by a website called CureTalk, who has published it here.
I will warn you that while some of you may feel I am an unabashed UAMS apologist here, I do try to keep a pretty even keel when discussing therapies and I *never* want anybody with this disease to feel that on this blog I challenge or disapprove of their therapeutic choices. This disease belongs to each of us, and we each much make decisions on our treatment based on our psychology, our physiology, our age, our outlook, the specifics of our disease, and other considerations.
At any rate, in this interview, I don't pull any punches. I do believe MM can be cured, and I do believe UAMS has the best chance of doing so. That still doesn't make it right for everybody, but it did for me.
Have a good weekend!
Not so much an update, but I did want to let you know that I was recently interviewed by a website called CureTalk, who has published it here.
I will warn you that while some of you may feel I am an unabashed UAMS apologist here, I do try to keep a pretty even keel when discussing therapies and I *never* want anybody with this disease to feel that on this blog I challenge or disapprove of their therapeutic choices. This disease belongs to each of us, and we each much make decisions on our treatment based on our psychology, our physiology, our age, our outlook, the specifics of our disease, and other considerations.
At any rate, in this interview, I don't pull any punches. I do believe MM can be cured, and I do believe UAMS has the best chance of doing so. That still doesn't make it right for everybody, but it did for me.
Have a good weekend!
Wednesday, June 27, 2012
The finger-spine-shoulder-reimmunization-maintenance update!
Phew, that's a mouthful. But I figured one day I (or others, perhaps) might want to search for some of these key words so I threw them all in there just for kicks.
It's been a busy stretch at work the last couple of weeks -- finally coming up for air here and thought I'd post an update on a few things.
First, my finger. Still pretty sensitive and still some numbness both with the index finger and the thumb. No real change there. The finger looks better, but still pretty ugly. It's been nine weeks today, I think...and I can't really say it's "healed" as there is still some ugly looking flesh there. Essentially it's going to look rather unappealing aesthetically. But as I remarked to somebody, if five years down the road I've beaten Myeloma and the worst that happens is I lost an inch of height and my right fingernail, it's a small price to pay. One day I might consider a skin graft to make it look a little less creepy...but I don't want to do that until
On the beating Myeloma front, a couple of things. I've found the Velcade is more and more difficult to tolerate. My body is getting sick of it. Mind you, I've been on a 30% higher dose than normal, even for Arkansas standards. The rationale for this is (a) the "proliferation subtype" of the disease I had which is a hallmark of aggressive disease, even though I have other "subtypes" that mitigate the risk somewhat, and (b) the fact that this darn 4mm formerly-active lesions in my bones haven't gone away yet. So I stick with the heavy Velcade dosing and also monthly Zometa, and we'll do another MRI in September.
I have been doing physical therapy for my shoulder (I can't recall if I even posted this here, but the Dex atrophied the muscles in my back responsible for keeping my right shoulder blade in place and it is "winging" around in front of my which is impinging some muscles in there and causing a good deal of pain. Or it was, anyhow. Physical therapy is definitely helping (Pilates, twice a week). I thought Pilates was for flakes and models that don't need to lose weight. Not so. It is a BRUTAL workout.
I've been spending a little time conversing with other patients online and learned that Dr. GT (now Idaho, formerly Utah, and before that a long-term colleague of BB's in Arkansas) does have a clear point of view on reimmunization and it's one that I can wrap my arms around because it's quantitative. When my CD3 and CD4 counts (both related to T cells, a good market of my immune system) have recovered to above 500, GT recommends reimmunization. This is also the threshold for discontinuing use of Acyclovir (I don't want to get Shingles again, I'll tell you that much!) and that, too, makes sense and gives me something to track. UAMS, of course, tracks these in all my bloodwork. They are pretty suppressed right now -- which is a function of long-term recovery from the transplants, but more likely Revlimid and, potentially, Velcade, both of which suppress white counts.
So that, at least, gives me a framework to operate in for both those topics. Something to discuss with BB.
I was contacted again by a fellow UAMS patient a couple of years ahead of me on the timeline (six years now, no recurrence). This person was kind enough to share his knowledge of the "extended maintenance" test going on right now. Essentially, BB is randomizing another THREE YEARS of low dose Revlimid (5mg) versus dropping maintenance. I'm curious about this, since BB told me years ago that he doesn't randomize unless he's certain there's no difference in outcome (otherwise he would put everybody on the arm that he felt helped). So I want to talk with him about his perspectives on that. The original "cure curve" done for TT3 did go out six years. That's the point where everybody breathes easy. As it happens the TT3 curve for people that achieved complete remission appears to bottom out at four years. The difference here is, I think, attributable to patients that have a functional cure in an MGUS type state (very low residual M protein that is of "undetermined significant" and which is seen in about 3% of the population. In other words, people that have residual M protein might take six years before they can be assured of being cured.
This raises an interesting point because it will be the first time in more than three years that I really have a decision point in terms of my therapy. Do I really want to discontinue Velcade, even thought it's becoming more and more difficult to tolerate, before those 4mm lesions are fully resolved with new bone? Not really. I'd like to stay on it until they're completely gone if need be. Do I really want to randomize myself into a protocol? I don't know...I think I'd rather look at the data and decide what I want to do. Do I really want to entertain three more years of maintenance? Maybe. Jill and I spoke last night to make sure we don't want any more kids...if I'm on Revlimid we're not going to be doing that for potentially another 3.5 years by which time I think it would be a lot to expect of Jill and other family members. These are the types of things to think about -- and the types of things which older Myeloma patients don't necessarily have to grapple with.
My plan right now is to ask Bart for a lot of data...I will dedicate a future post to what I'll be looking for. And I want the time to digest this and determine what, if anything, to do. Meanwhile, 10 more Velcade infusions to go before the end of scheduled maintenance. Hah...I sound like an online service that has planned downtime! :)
It's been a busy stretch at work the last couple of weeks -- finally coming up for air here and thought I'd post an update on a few things.
First, my finger. Still pretty sensitive and still some numbness both with the index finger and the thumb. No real change there. The finger looks better, but still pretty ugly. It's been nine weeks today, I think...and I can't really say it's "healed" as there is still some ugly looking flesh there. Essentially it's going to look rather unappealing aesthetically. But as I remarked to somebody, if five years down the road I've beaten Myeloma and the worst that happens is I lost an inch of height and my right fingernail, it's a small price to pay. One day I might consider a skin graft to make it look a little less creepy...but I don't want to do that until
On the beating Myeloma front, a couple of things. I've found the Velcade is more and more difficult to tolerate. My body is getting sick of it. Mind you, I've been on a 30% higher dose than normal, even for Arkansas standards. The rationale for this is (a) the "proliferation subtype" of the disease I had which is a hallmark of aggressive disease, even though I have other "subtypes" that mitigate the risk somewhat, and (b) the fact that this darn 4mm formerly-active lesions in my bones haven't gone away yet. So I stick with the heavy Velcade dosing and also monthly Zometa, and we'll do another MRI in September.
I have been doing physical therapy for my shoulder (I can't recall if I even posted this here, but the Dex atrophied the muscles in my back responsible for keeping my right shoulder blade in place and it is "winging" around in front of my which is impinging some muscles in there and causing a good deal of pain. Or it was, anyhow. Physical therapy is definitely helping (Pilates, twice a week). I thought Pilates was for flakes and models that don't need to lose weight. Not so. It is a BRUTAL workout.
I've been spending a little time conversing with other patients online and learned that Dr. GT (now Idaho, formerly Utah, and before that a long-term colleague of BB's in Arkansas) does have a clear point of view on reimmunization and it's one that I can wrap my arms around because it's quantitative. When my CD3 and CD4 counts (both related to T cells, a good market of my immune system) have recovered to above 500, GT recommends reimmunization. This is also the threshold for discontinuing use of Acyclovir (I don't want to get Shingles again, I'll tell you that much!) and that, too, makes sense and gives me something to track. UAMS, of course, tracks these in all my bloodwork. They are pretty suppressed right now -- which is a function of long-term recovery from the transplants, but more likely Revlimid and, potentially, Velcade, both of which suppress white counts.
So that, at least, gives me a framework to operate in for both those topics. Something to discuss with BB.
I was contacted again by a fellow UAMS patient a couple of years ahead of me on the timeline (six years now, no recurrence). This person was kind enough to share his knowledge of the "extended maintenance" test going on right now. Essentially, BB is randomizing another THREE YEARS of low dose Revlimid (5mg) versus dropping maintenance. I'm curious about this, since BB told me years ago that he doesn't randomize unless he's certain there's no difference in outcome (otherwise he would put everybody on the arm that he felt helped). So I want to talk with him about his perspectives on that. The original "cure curve" done for TT3 did go out six years. That's the point where everybody breathes easy. As it happens the TT3 curve for people that achieved complete remission appears to bottom out at four years. The difference here is, I think, attributable to patients that have a functional cure in an MGUS type state (very low residual M protein that is of "undetermined significant" and which is seen in about 3% of the population. In other words, people that have residual M protein might take six years before they can be assured of being cured.
This raises an interesting point because it will be the first time in more than three years that I really have a decision point in terms of my therapy. Do I really want to discontinue Velcade, even thought it's becoming more and more difficult to tolerate, before those 4mm lesions are fully resolved with new bone? Not really. I'd like to stay on it until they're completely gone if need be. Do I really want to randomize myself into a protocol? I don't know...I think I'd rather look at the data and decide what I want to do. Do I really want to entertain three more years of maintenance? Maybe. Jill and I spoke last night to make sure we don't want any more kids...if I'm on Revlimid we're not going to be doing that for potentially another 3.5 years by which time I think it would be a lot to expect of Jill and other family members. These are the types of things to think about -- and the types of things which older Myeloma patients don't necessarily have to grapple with.
My plan right now is to ask Bart for a lot of data...I will dedicate a future post to what I'll be looking for. And I want the time to digest this and determine what, if anything, to do. Meanwhile, 10 more Velcade infusions to go before the end of scheduled maintenance. Hah...I sound like an online service that has planned downtime! :)
Friday, June 15, 2012
Happy Birthday to me...
I don't have too much to report, but I turn 44 today, which is now officially over the lower limit of the 3-5 year life that I was told by at least one doctor I could expect when I was diagnosed at the age of 40.
I'm pleased he was wrong.
Time -- and the next MRI -- will tell where I am in terms of being pronounced "cured" and whether or not I can discontinue therapy. But so far, so good.
My finger is still messed up but healing, albeit slowly. I now wear a simple band aid covering what is left of the wound.
I'm watching a rather dreary webcast of some recent Myeloma research that, as many Myeloma discussions do, treats recurrence as inevitable. I'm pleased my doctor doesn't subscribe to this point of view.
Life is good. I'll be glad when I can get off these meds, and I can rebuild some muscle and lose a bit of weight and get some energy back. But life is good indeed.
I hope you all have great weekends!
I'm pleased he was wrong.
Time -- and the next MRI -- will tell where I am in terms of being pronounced "cured" and whether or not I can discontinue therapy. But so far, so good.
My finger is still messed up but healing, albeit slowly. I now wear a simple band aid covering what is left of the wound.
I'm watching a rather dreary webcast of some recent Myeloma research that, as many Myeloma discussions do, treats recurrence as inevitable. I'm pleased my doctor doesn't subscribe to this point of view.
Life is good. I'll be glad when I can get off these meds, and I can rebuild some muscle and lose a bit of weight and get some energy back. But life is good indeed.
I hope you all have great weekends!
Tuesday, May 29, 2012
Quick update and an interesting article on curability...
Update one: the no-Ativan lifestyle does return some mental acuity and energy, even if I am still largely exhausted from time to time due to irregular sleep patterns. I took an Ambien on my last Dex night and got solid rest; I'm afraid to overdo it but one night a week is almost certainly harmless. I was less sluggish than I thought I would be, though a large cup of joe probably helped in that regard. I have never been a coffee drinker, but I must confess it did make a difference so I can see using it from time to time. The prevailing medical knowledge at this point in time is that it's good for you (this changes constantly, it seems) for what that's worth!
The finger continues to heal and it seems like it is getting better day by day, though last night Parker looked at it and said "THAT is what you call BETTER?" :) It's still pretty ugly looking...goopy and red. Looks like some skin is trying to form. It will be four weeks tomorrow and it's not looking like it's going to be healed any time soon. Additionally, the numbness in my thumb appears to extend to the forefinger (I have been brave enough to gingerly test for this) so that nerve impingement has yet to resolve. I sent a photo of the finger and note of the lingering impingement to the surgeon who dug the cancer out, and no response this time (last time he said no worries, looks good, etc.) so I assume it is steady as she goes. Will send him another picture in a few days' time.
After three years, have finally resolved to take Immodium with some regularity to attempt to establish some regularity. By which I mean much less frequency. I didn't want to put my GI tract in a tug of war between competing medicines but it's just become too much to deal with. I probably should have done this a while ago. I am just hoping things will return to normal when all these meds are done!
Lastly, I came across a very interesting article published in Haematologica, which is a European periodical. It's a study done by two Spanish doctors. It is notable because it says that 3-10% of autologous stemcell transplant patients can be considered to be operationally cured. This is in line with Arkansas' results from Total Therapy 2. Total Therapy 3 has been vastly more successful, and Arkansas claims cure rates in excess of 50%, and higher still for low-risk myeloma.
It's terrific to see another crack in the wall of the "incurability" facade...hopefully with more time and published data, more people will open their minds to the notion that aggressive treatment can cure this affliction.
http://www.haematologica.org/content/96/9/1246.full
I hope everyone had a reflective and happy Memorial Day!
The finger continues to heal and it seems like it is getting better day by day, though last night Parker looked at it and said "THAT is what you call BETTER?" :) It's still pretty ugly looking...goopy and red. Looks like some skin is trying to form. It will be four weeks tomorrow and it's not looking like it's going to be healed any time soon. Additionally, the numbness in my thumb appears to extend to the forefinger (I have been brave enough to gingerly test for this) so that nerve impingement has yet to resolve. I sent a photo of the finger and note of the lingering impingement to the surgeon who dug the cancer out, and no response this time (last time he said no worries, looks good, etc.) so I assume it is steady as she goes. Will send him another picture in a few days' time.
After three years, have finally resolved to take Immodium with some regularity to attempt to establish some regularity. By which I mean much less frequency. I didn't want to put my GI tract in a tug of war between competing medicines but it's just become too much to deal with. I probably should have done this a while ago. I am just hoping things will return to normal when all these meds are done!
Lastly, I came across a very interesting article published in Haematologica, which is a European periodical. It's a study done by two Spanish doctors. It is notable because it says that 3-10% of autologous stemcell transplant patients can be considered to be operationally cured. This is in line with Arkansas' results from Total Therapy 2. Total Therapy 3 has been vastly more successful, and Arkansas claims cure rates in excess of 50%, and higher still for low-risk myeloma.
It's terrific to see another crack in the wall of the "incurability" facade...hopefully with more time and published data, more people will open their minds to the notion that aggressive treatment can cure this affliction.
http://www.haematologica.org/content/96/9/1246.full
I hope everyone had a reflective and happy Memorial Day!
Sunday, May 13, 2012
Plant vs. Zombie...
Another pop culture reference...Plants vs. Zombies is an extremely popular game for mobile phones.
As I tell the wife, the best jokes are the ones you have to explain! ;)
Anyhow...
I've been feeling listless for, oh, I dunno, six months or so. I've been taking Ativan (Lorazempam) to help me sleep soundly. It's worked pretty well...I don't wake up feeling like I'm the walking dead, as is the case with Ambien. And yet I get a solid night's sleep.
Unfortunately...it does drain me of any will to DO anything. I feel like any effort is too much. I can, on a weekend, muster up a round of golf...though truth be told even then I feel like 16 holes is plenty. That's not good news for somebody fairly young (43) and hopefully living every day to its fullest insofar as I am hopefully cheating death.
Turns out Ativan is essentially Valium. That would explain it.
So it seems I can either not sleep -- and be a zombie -- or take Ativan -- and feel like a potted plant.
Hmm....
I think I vote zombie, at this point. It gives me more drive at work, even if I feel like collapsing from exhaustion.
In any case, a high class problem considering I could be pushing up daisies right now.
In other news, the finger hurts like crazy still, although it just now appears to be starting to improve. The doc said it should show no signs of improvement for two weeks but I can see the flesh starting to try to fill in the gap were it was dug out. I'm sure it will be another month before it is presentable but I'm glad to see something happening, given how painful it is.
There has been news in the last week about Revlimid being linked to secondary cancers, including carcinoma...I'm sure this was put in action by the hatchet job that quack dermatologist did to me (I have dubbed him "The Butcher of Encino") but the Revlimid probably didn't help. More on that, perhaps, in the coming days.
DON'T FORGET TO CALL YOUR MOTHER!!!! :)
As I tell the wife, the best jokes are the ones you have to explain! ;)
Anyhow...
I've been feeling listless for, oh, I dunno, six months or so. I've been taking Ativan (Lorazempam) to help me sleep soundly. It's worked pretty well...I don't wake up feeling like I'm the walking dead, as is the case with Ambien. And yet I get a solid night's sleep.
Unfortunately...it does drain me of any will to DO anything. I feel like any effort is too much. I can, on a weekend, muster up a round of golf...though truth be told even then I feel like 16 holes is plenty. That's not good news for somebody fairly young (43) and hopefully living every day to its fullest insofar as I am hopefully cheating death.
Turns out Ativan is essentially Valium. That would explain it.
So it seems I can either not sleep -- and be a zombie -- or take Ativan -- and feel like a potted plant.
Hmm....
I think I vote zombie, at this point. It gives me more drive at work, even if I feel like collapsing from exhaustion.
In any case, a high class problem considering I could be pushing up daisies right now.
In other news, the finger hurts like crazy still, although it just now appears to be starting to improve. The doc said it should show no signs of improvement for two weeks but I can see the flesh starting to try to fill in the gap were it was dug out. I'm sure it will be another month before it is presentable but I'm glad to see something happening, given how painful it is.
There has been news in the last week about Revlimid being linked to secondary cancers, including carcinoma...I'm sure this was put in action by the hatchet job that quack dermatologist did to me (I have dubbed him "The Butcher of Encino") but the Revlimid probably didn't help. More on that, perhaps, in the coming days.
DON'T FORGET TO CALL YOUR MOTHER!!!! :)
Tuesday, May 8, 2012
A bit of finger...
Pop culture reference: that's the name of a brief little instrumental interlude on Black Sabbath's 1970 eponymous debut CD.
Good old Ozzy...once every parent's nightmare, now the staple of NFL background music and 8th grade marching bands everywhere.
If my friend Gloria B is reading this, hello! :)
I digress.
So, clever post titles aside, I thought I would bring you up to date on the finger situation.
I went to Arkansas last week to have a Mohs procedure done to my right index finger. In this procedure, a chunk of flesh is razored off and then sent to pathology. They check the margins of the tissue to ensure that all the cancer has been cut out. If the first cut didn't accomplish it, they repeat the procedure until the edges of the tissue are completely clean.
The wife and I arrived in time to have dinner with BJ, Dr. BB and his wife KB. A wonderful time was had by all and BB did not disappoint. We were eating outside when he and his wife arrived...he shouted a greeting which made his wife jump about ten feet in the air. He had some interesting jokes about misuse of my finger and how that could have resulted in this condition. But he then turned serious and asked who would be doing the procedure (a great doctor, SD, whom he confirmed was a good choice) and who would be reviewing the tissue. He then called his friend who ran pathology and asked him to personally review the tissue samples, which is just another example of how extraordinary BB is. I love that man.
The next day, they chopped and chopped. It took four separate passes at it before they got the cancer. I was staring at my finger bone (I think) at one point, given how deep the cut was. Pretty gnarly. They removed the nail for good (Jill said that they literally just pulled it back towards my wrist until it popped out...yuck). I was given a lot of lidocaine by injection into the finger so thankfully I felt nothing...at the time, that is.
I had a comically large bandage on my finger:
I changed this dressing last night, after five days. To say it hurt is an understatement -- it was EXCRUCIATING.
With apologies to the squeamish, here's what's left of the finger.
OUCH!!!!
The nurse reviewed the photo and said it "looks fantastic." I would hate to see what something that DOESN'T look fantastic is.
Anyhow, I am told 6-8 weeks for a full recovery and 99% chance that the procedure got all the cancer, so we'll see. Right now it's VERY painful and I'm on a fairly steady diet of Vicodin, which I'm looking forward to discontinuing as soon as I can.
Good old Ozzy...once every parent's nightmare, now the staple of NFL background music and 8th grade marching bands everywhere.
If my friend Gloria B is reading this, hello! :)
I digress.
So, clever post titles aside, I thought I would bring you up to date on the finger situation.
I went to Arkansas last week to have a Mohs procedure done to my right index finger. In this procedure, a chunk of flesh is razored off and then sent to pathology. They check the margins of the tissue to ensure that all the cancer has been cut out. If the first cut didn't accomplish it, they repeat the procedure until the edges of the tissue are completely clean.
The wife and I arrived in time to have dinner with BJ, Dr. BB and his wife KB. A wonderful time was had by all and BB did not disappoint. We were eating outside when he and his wife arrived...he shouted a greeting which made his wife jump about ten feet in the air. He had some interesting jokes about misuse of my finger and how that could have resulted in this condition. But he then turned serious and asked who would be doing the procedure (a great doctor, SD, whom he confirmed was a good choice) and who would be reviewing the tissue. He then called his friend who ran pathology and asked him to personally review the tissue samples, which is just another example of how extraordinary BB is. I love that man.
The next day, they chopped and chopped. It took four separate passes at it before they got the cancer. I was staring at my finger bone (I think) at one point, given how deep the cut was. Pretty gnarly. They removed the nail for good (Jill said that they literally just pulled it back towards my wrist until it popped out...yuck). I was given a lot of lidocaine by injection into the finger so thankfully I felt nothing...at the time, that is.
I had a comically large bandage on my finger:
I changed this dressing last night, after five days. To say it hurt is an understatement -- it was EXCRUCIATING.
With apologies to the squeamish, here's what's left of the finger.
OUCH!!!!
The nurse reviewed the photo and said it "looks fantastic." I would hate to see what something that DOESN'T look fantastic is.
Anyhow, I am told 6-8 weeks for a full recovery and 99% chance that the procedure got all the cancer, so we'll see. Right now it's VERY painful and I'm on a fairly steady diet of Vicodin, which I'm looking forward to discontinuing as soon as I can.
Wednesday, April 18, 2012
Well, DAMMIT...finger problems
No sooner did I post my previous update than I got a call from the dermatology clinic at UAMS. Very likely that my finger biopsy revealed a squamous carcinoma that needs to be removed with some urgency.
Unlikely that this will spread, and unlikely that I will need the Ronnie Lott treatment. Nonetheless, unsettling.
Here's a frightening abstract from 2007:
I'm VERY happy the UAMS people diagnosed this relatively early. Once again, they are vigilant. The whole late stage thing above is VERY disconcerting.
In contrast, I'm not very happy with my LA dermatologist right now. Revlimid didn't help but the cause of this was the trauma from his treatment.
Grr....
Was hoping I would only have to beat cancer once, but the disease continues to foolishly pick on the wrong guy.
Unlikely that this will spread, and unlikely that I will need the Ronnie Lott treatment. Nonetheless, unsettling.
Here's a frightening abstract from 2007:
Squamous cell carcinoma arising from the nail bed is not common. This condition can be easily misdiagnosed, especially if there is preceding trauma. We present here a case of squamous cell carcinoma of the right thumb in a 70 year-old man. The distal phalanx and part of the proximal phalanx were also involved. We performed a disarticulation of the metacarpophalangeal joint of the right thumb. The wound healed well. If an early diagnosis is made, then Moh's micrographic surgery or wide local excision with the use of a local flap could be advocated. In late stages, amputation or disarticulation is the treatment of choice. |
I'm VERY happy the UAMS people diagnosed this relatively early. Once again, they are vigilant. The whole late stage thing above is VERY disconcerting.
In contrast, I'm not very happy with my LA dermatologist right now. Revlimid didn't help but the cause of this was the trauma from his treatment.
Grr....
Was hoping I would only have to beat cancer once, but the disease continues to foolishly pick on the wrong guy.
Arkansas update...all (pretty) good...
Hello folks. Spent last week in lovely Little Rock. Several goals, with mixed success:
1. Eat a pizza at Dam Goode Pies. Check.
2. Eat a pulled pork sandwich from Whole Hog BBQ. Check. With volcano sauce, for those completists playing the home game.
3. Good PET scan affirming that the pain in my shoulder is not cancer. Check.
4. Good MRI affirming that the four lesions in my spine have fully resolved, at which point I will achieve what is termed "ACR" for "Arkansas Complete Remission." Ch....uhhh....not so fast. The four lesions (in my thoracic vertebrae) remain unchanged from six months ago, which means they are unchanged from six months before. There is no cancer activity, but until these refill with new bone, they remain a microenvironment where the cancer can restart. I do not want that to happen. My friend BB (not to be confused with the good doctor) recently had a full-blown relapse occur...he was in my same situation: low-risk disease, good prognosis, responding well to therapy, complete remission...and yet his original lesions hadn't fully resolved and one of them started back up again. He now has high risk disease and is refractory to just about everything...although Pomalidomide (next-gen Revlimid) appears to be working, thank God. So...basically I'm pretty bummed that the lesions are still there. Dr. BB prescribed more Zometa and I will have to be more militant about getting it once a month.
5. Good bone marrow confirming the absence of Myeloma. Check. But, uh...something not so great going on. As I'm reading the pathologist's report, I was happy to see 4% plasma cells in the marrow aspirate, 40% cellularity in the marrow, and negative for plasma cell Myeloma. All good. But seems I am NOT so negative for dyskeratosis and dys-somethin'-else, and that means that according to the pathology report I have myelodysplastic syndrome. What is MDS, you ask? Well, remember all those stories about Revlimid causing secondary cancers like Leukemia? MDS is a precursor condition to Leukemia.
Gulp. Not good.
Jill wisely counseled me to calm down until I could speak with BB about it, and although we were both quite worried, we did wait...and wait...and wait. When I saw BB, he got up to give me a hug and asked how I was. I told him I'd be doing better if the damn lesions in my spine had resolved, and I didn't have MDS. He ignored the first part and dove into the pathology report on the marrow.
What he said MOSTLY put me at ease.
"This damn pathologist...first s/he doesn't see this ever and now f***ing everybody's got Myelo-dys-f***in'-plasia!" (note obscured pronoun to protect the identity of the poor pathologist, and barely-obscured profanity to convey the character of my doctor without offending too many people)
BB went through the detailed "cytogenetic analysis" of the marrow which looks at things on a gene-level. He said there is nothing there that would indicate myelodysplasia. He said the therapy itself can make things appear as though there is myelodysplasia simply from the shape of the white and red blood cells. So...yeah...I guess I don't need to worry? : |
6. My finger confirmed as no big deal. Uh....not so much. I saw a different dermatologist who saw the fingernail and said it could be a squamous carcinoma (which could become melanoma) or it might already be melanoma. So I was rushed to a biopsy where they removed half of my fingernail (split down the middle, the right side of my right index finger has no nail) and a chunk of the nail bed (the puffy part of the flesh just closer to the knuckle than the cuticle). It's been a wait and I am still waiting for the results. If it IS cancer, they'll need to take out a bit more. I hopefully won't need to be given the Ronnie Lott treatment!! If it's NOT cancer, then I still probably have to deal with the fact that I may have no fingernail on half my finger, which sounds uncomfortable. But I have friends who have lost the use of their arms from this disease, so I can't complain too much.
Separately, I am growing concerned than my use of Ativan as a sleep aid is interfering with my energy level during the day. I am discontinuing it for a bit to see what happens...other than sleep deprivation. I started at the ceiling last night and got no sleep whatsoever! I know I need my rest...but I also need focus and energy and joie de vivre during the day. Yet another choice in treatment!
Thanks to all of you for sticking with me and checking in to make sure I post an update. I appreciate every one of you!!
1. Eat a pizza at Dam Goode Pies. Check.
2. Eat a pulled pork sandwich from Whole Hog BBQ. Check. With volcano sauce, for those completists playing the home game.
3. Good PET scan affirming that the pain in my shoulder is not cancer. Check.
4. Good MRI affirming that the four lesions in my spine have fully resolved, at which point I will achieve what is termed "ACR" for "Arkansas Complete Remission." Ch....uhhh....not so fast. The four lesions (in my thoracic vertebrae) remain unchanged from six months ago, which means they are unchanged from six months before. There is no cancer activity, but until these refill with new bone, they remain a microenvironment where the cancer can restart. I do not want that to happen. My friend BB (not to be confused with the good doctor) recently had a full-blown relapse occur...he was in my same situation: low-risk disease, good prognosis, responding well to therapy, complete remission...and yet his original lesions hadn't fully resolved and one of them started back up again. He now has high risk disease and is refractory to just about everything...although Pomalidomide (next-gen Revlimid) appears to be working, thank God. So...basically I'm pretty bummed that the lesions are still there. Dr. BB prescribed more Zometa and I will have to be more militant about getting it once a month.
5. Good bone marrow confirming the absence of Myeloma. Check. But, uh...something not so great going on. As I'm reading the pathologist's report, I was happy to see 4% plasma cells in the marrow aspirate, 40% cellularity in the marrow, and negative for plasma cell Myeloma. All good. But seems I am NOT so negative for dyskeratosis and dys-somethin'-else, and that means that according to the pathology report I have myelodysplastic syndrome. What is MDS, you ask? Well, remember all those stories about Revlimid causing secondary cancers like Leukemia? MDS is a precursor condition to Leukemia.
Gulp. Not good.
Jill wisely counseled me to calm down until I could speak with BB about it, and although we were both quite worried, we did wait...and wait...and wait. When I saw BB, he got up to give me a hug and asked how I was. I told him I'd be doing better if the damn lesions in my spine had resolved, and I didn't have MDS. He ignored the first part and dove into the pathology report on the marrow.
What he said MOSTLY put me at ease.
"This damn pathologist...first s/he doesn't see this ever and now f***ing everybody's got Myelo-dys-f***in'-plasia!" (note obscured pronoun to protect the identity of the poor pathologist, and barely-obscured profanity to convey the character of my doctor without offending too many people)
BB went through the detailed "cytogenetic analysis" of the marrow which looks at things on a gene-level. He said there is nothing there that would indicate myelodysplasia. He said the therapy itself can make things appear as though there is myelodysplasia simply from the shape of the white and red blood cells. So...yeah...I guess I don't need to worry? : |
6. My finger confirmed as no big deal. Uh....not so much. I saw a different dermatologist who saw the fingernail and said it could be a squamous carcinoma (which could become melanoma) or it might already be melanoma. So I was rushed to a biopsy where they removed half of my fingernail (split down the middle, the right side of my right index finger has no nail) and a chunk of the nail bed (the puffy part of the flesh just closer to the knuckle than the cuticle). It's been a wait and I am still waiting for the results. If it IS cancer, they'll need to take out a bit more. I hopefully won't need to be given the Ronnie Lott treatment!! If it's NOT cancer, then I still probably have to deal with the fact that I may have no fingernail on half my finger, which sounds uncomfortable. But I have friends who have lost the use of their arms from this disease, so I can't complain too much.
Separately, I am growing concerned than my use of Ativan as a sleep aid is interfering with my energy level during the day. I am discontinuing it for a bit to see what happens...other than sleep deprivation. I started at the ceiling last night and got no sleep whatsoever! I know I need my rest...but I also need focus and energy and joie de vivre during the day. Yet another choice in treatment!
Thanks to all of you for sticking with me and checking in to make sure I post an update. I appreciate every one of you!!
Friday, March 9, 2012
Gadzooks it's been a long time! Sorry folks! :)
Thought I better drop by and let you know I'm still alive and kicking! The demands of my job have risen of late and have kept me very, very busy...so I do apologize but there are some interesting things to report.
I continue to tolerate my meds reasonably well...I continue to remain in complete remission...I will get another course of Zometa next week along with my Velcade and then it's off to Arkansas the second week in April to get poked, prodded, analyzed, scanned and written up. We're looking for those little teensy pits in my spine to go away, at which point I believe I will be in MRI complete remission.
As I write this, I note my friend BB (not the doctor, but the patient) was very, very close to this...with only about three small lesions that were remaining and were resolving...when he lost remission. He is now continuing the struggle, having ruled out Carfilzomib because of his liver's inability to tolerate it, and now trying Pomalidomide. His spirits remain high and he inspires me...but his is also a cautionary tale indeed. Not everybody maintains remission. Even in the low-risk cohort, which he shared with me, people do lose remission during those critical three years. Until I'm past that four year point, really, where the curve does appear to flatten, I will have a bit of a sword of Damocles over my head.
As far as other news to report, we have figured out what was wrong with my shoulder! Regular readers (if any of you remain, given how long this update has taken) will recall that I felt a pain in my shoulder about six months ago, and was originally concerned it was tumors reactivating. I got an MRI and ruled that out, tried some massages that didn't help, got a massage from a person that was a physical therapist who suggested it might be a rotator muscle. Went to an orthopedist who gave me a shot of cortisone in the shoulder where this rotator muscle emerges from behind the shoulder blade. Boy did THAT suck. It did nothing whatsoever at the time (beyond the needle pain which was moderate, not horrible) but that night it was like I had awakened a sleeping devil and he was really irritated that I'd interrupted his sleep.
The orthopedist said I needed to go to a physical therapist, and I fortunately found one who really understands shoulders. He immediately knew what muscles were the problem (the superspinatus and something else underneath the shoulder blade). I've been a few times and it is helping, but the kicker is...in conversation he mentioned this is common for someone on steroids.
Dex is the culprit, ladies and gentlemen. It has destroyed the muscle tissue on BOTH sides of my shoulders, so I can expect to have to rehab the left one soon enough. The pain on the right is bad enough where I still use Vicodin a few nights a week to ensure a good night's sleep -- and in fact the mildly constipating effect of the narcotics help counterract some of the other meds so I'm afraid I'm becoming accustomed to having one of these pills each night, between the gastroenteritis caused by the Velcade and the shoulder pain and the GI issues, they are kind of a godsend. Plus they make a guy sleepy.
When this is all over, I will eventually cut out the Ativan and the Vicodin...I'm staying away from Ambien because they left me a zombie in the morning but 1mg a night of the Ativan is enough to make me drowsy. It's working, I ain't gonna change it. Hopefully I won't end up on a future poster for Reefer Madness: 2012.
I continue to tolerate my meds reasonably well...I continue to remain in complete remission...I will get another course of Zometa next week along with my Velcade and then it's off to Arkansas the second week in April to get poked, prodded, analyzed, scanned and written up. We're looking for those little teensy pits in my spine to go away, at which point I believe I will be in MRI complete remission.
As I write this, I note my friend BB (not the doctor, but the patient) was very, very close to this...with only about three small lesions that were remaining and were resolving...when he lost remission. He is now continuing the struggle, having ruled out Carfilzomib because of his liver's inability to tolerate it, and now trying Pomalidomide. His spirits remain high and he inspires me...but his is also a cautionary tale indeed. Not everybody maintains remission. Even in the low-risk cohort, which he shared with me, people do lose remission during those critical three years. Until I'm past that four year point, really, where the curve does appear to flatten, I will have a bit of a sword of Damocles over my head.
As far as other news to report, we have figured out what was wrong with my shoulder! Regular readers (if any of you remain, given how long this update has taken) will recall that I felt a pain in my shoulder about six months ago, and was originally concerned it was tumors reactivating. I got an MRI and ruled that out, tried some massages that didn't help, got a massage from a person that was a physical therapist who suggested it might be a rotator muscle. Went to an orthopedist who gave me a shot of cortisone in the shoulder where this rotator muscle emerges from behind the shoulder blade. Boy did THAT suck. It did nothing whatsoever at the time (beyond the needle pain which was moderate, not horrible) but that night it was like I had awakened a sleeping devil and he was really irritated that I'd interrupted his sleep.
The orthopedist said I needed to go to a physical therapist, and I fortunately found one who really understands shoulders. He immediately knew what muscles were the problem (the superspinatus and something else underneath the shoulder blade). I've been a few times and it is helping, but the kicker is...in conversation he mentioned this is common for someone on steroids.
Dex is the culprit, ladies and gentlemen. It has destroyed the muscle tissue on BOTH sides of my shoulders, so I can expect to have to rehab the left one soon enough. The pain on the right is bad enough where I still use Vicodin a few nights a week to ensure a good night's sleep -- and in fact the mildly constipating effect of the narcotics help counterract some of the other meds so I'm afraid I'm becoming accustomed to having one of these pills each night, between the gastroenteritis caused by the Velcade and the shoulder pain and the GI issues, they are kind of a godsend. Plus they make a guy sleepy.
When this is all over, I will eventually cut out the Ativan and the Vicodin...I'm staying away from Ambien because they left me a zombie in the morning but 1mg a night of the Ativan is enough to make me drowsy. It's working, I ain't gonna change it. Hopefully I won't end up on a future poster for Reefer Madness: 2012.
Thursday, January 5, 2012
Eye on the Prize
Well folks I'm so far behind here and I'm very sorry about that! I do have stuff to post as I said before, just been busy. The highlights, if I had to put them in bullet points:
* Velcade gives me gastroenteritis weekly now. Not pleasant. Managing pain with Vicodin as needed. Annoying, but I'll live with it.
* Very interesting debate on curability with BB representing the cure side and a very smart Mayo doctor representing the non-cure side. Finally heard the non-cure argument: they don't believe the line in the Arkansas recurrence curve flattens. Bart says they are looking at old data, and it does flatten. Simple as that.
* Mindful that it's no guarantee, I should mention a good friend of mine, also BB (but not the BB who recently passed away) was in the same boat as me and has lost remission. This is not very good news, as it means his disease is now resistant to Velcade and Revlimid. But BB is sticking with BB who will have a plan. Meanwhile, fingers are crossed!
* I've also noticed that the curve doesn't flatten after three years of therapy...it's mostly flat there but the real plateau isn't reached until about four or maybe a bit more years of maintenance post-remission. I had been thinking about how long I wanted to continue with the meds...I don't like the side effects but I also don't like the thought of a few cells not getting with the program (see my previous bullet point) and causing trouble after I let up. So I'd been toying with the idea of asking to stay on maintenance at least one more year after my three-year anniversary comes up.
With this in mind, a reader with whom I have corresponded before emailed me today to say that he's been able to stop all therapy after 4.5 years of maintenance. He was told, in that beautiful definitive way that only BB can deliver, that "your myeloma is gone and IT WILL NOT COME BACK."
BB is not cavalier. He doesn't say that until he's sure. That's the prize though...and my eyes remain on it. So with every little bout of gastroenteritis or other GI issues or a botched fingernail that won't heal, I keep focus.
Happy New Year and good health to you all! More to come soon.
* Velcade gives me gastroenteritis weekly now. Not pleasant. Managing pain with Vicodin as needed. Annoying, but I'll live with it.
* Very interesting debate on curability with BB representing the cure side and a very smart Mayo doctor representing the non-cure side. Finally heard the non-cure argument: they don't believe the line in the Arkansas recurrence curve flattens. Bart says they are looking at old data, and it does flatten. Simple as that.
* Mindful that it's no guarantee, I should mention a good friend of mine, also BB (but not the BB who recently passed away) was in the same boat as me and has lost remission. This is not very good news, as it means his disease is now resistant to Velcade and Revlimid. But BB is sticking with BB who will have a plan. Meanwhile, fingers are crossed!
* I've also noticed that the curve doesn't flatten after three years of therapy...it's mostly flat there but the real plateau isn't reached until about four or maybe a bit more years of maintenance post-remission. I had been thinking about how long I wanted to continue with the meds...I don't like the side effects but I also don't like the thought of a few cells not getting with the program (see my previous bullet point) and causing trouble after I let up. So I'd been toying with the idea of asking to stay on maintenance at least one more year after my three-year anniversary comes up.
With this in mind, a reader with whom I have corresponded before emailed me today to say that he's been able to stop all therapy after 4.5 years of maintenance. He was told, in that beautiful definitive way that only BB can deliver, that "your myeloma is gone and IT WILL NOT COME BACK."
BB is not cavalier. He doesn't say that until he's sure. That's the prize though...and my eyes remain on it. So with every little bout of gastroenteritis or other GI issues or a botched fingernail that won't heal, I keep focus.
Happy New Year and good health to you all! More to come soon.
Wednesday, December 7, 2011
In memoriam...Bruce Bertsche
I have a few updates to post in the next few days: gastroenteritis / gastritis, an interesting debate on curability versus control, some studies on the linkage of Revlimid with second cancers (or the lack thereof), etc.
But first, I want to talk about my friend Bruce. It's taken me a few days before I was ready to say anything, so sorry for the delay in posts.
I met Bruce and his wonderful wife Jan during my treatment -- they came to Arkansas during the middle of my treatment after reading this blog and other discussions with friends and medical professionals. We hit it off immediately.
Bruce was dealt a far worse hand than I. His disease was very difficult to detect -- his Myeloma did not appear in his blood, or in light chain analysis. It could only be found on imaging and via bone marrow biopsies.
I don't recall the extent to which Bruce had been treated before arriving in Arkansas, but he had already suffered terrible bone involvement and lost partial sight from the disease. He was diagnosed with a high risk variant, for which outcomes are indeed dire. Most people elsewhere are given a year to 18 months. Bruce, as it happens, survived about twice that long. During his treatment, the disease left the blood system and metastacized through his body. He dealt with it spreading to his liver. He dealt with other cancers (unrelated, most likely, but which capitalized on his weakened immune system) that required surgeries. He suffered terrible pain, and endured the strongest medicines there are which wreaked havoc on his body and left him fatigued beyond most people's ability to reckon.
Through it all, he maintained a quiet dignity and grace that was inspirational to me, and through it all his wife kept her faith, her sense of humor and her compassion -- and never once became bitter despite this terrible curveball that life threw at their family.
Through the past three years, we kept in touch and whenever our schedules in Arkansas coincided, we tried to connect for dinner or a nice bottle of wine. We both found it comforting to run into each other at the clinic...we'd been in the trenches together.
At the end, Bruce remained responsive to the medicines that BB was cooking up for him, which included Carfilzomib. Unfortunately, en route to the clinic for treatment he suffered a cardiac event of some kind. Whether this was brought on by the disease, the treatment, the general run-down state in which he found himself or whether it was completely unrelated, is at this time unclear. What is clear, though, is that Bruce is no longer suffering.
I would like the thoughts and prayers of this little community, which played such a hugely beneficial part in my own therapy and recovery and which continues to inspire me on a weekly basis, to turn to Jan and the rest of the Bertsche family. We all lost a very good man.
God bless you, Jan. We love you.
But first, I want to talk about my friend Bruce. It's taken me a few days before I was ready to say anything, so sorry for the delay in posts.
I met Bruce and his wonderful wife Jan during my treatment -- they came to Arkansas during the middle of my treatment after reading this blog and other discussions with friends and medical professionals. We hit it off immediately.
Bruce was dealt a far worse hand than I. His disease was very difficult to detect -- his Myeloma did not appear in his blood, or in light chain analysis. It could only be found on imaging and via bone marrow biopsies.
I don't recall the extent to which Bruce had been treated before arriving in Arkansas, but he had already suffered terrible bone involvement and lost partial sight from the disease. He was diagnosed with a high risk variant, for which outcomes are indeed dire. Most people elsewhere are given a year to 18 months. Bruce, as it happens, survived about twice that long. During his treatment, the disease left the blood system and metastacized through his body. He dealt with it spreading to his liver. He dealt with other cancers (unrelated, most likely, but which capitalized on his weakened immune system) that required surgeries. He suffered terrible pain, and endured the strongest medicines there are which wreaked havoc on his body and left him fatigued beyond most people's ability to reckon.
Through it all, he maintained a quiet dignity and grace that was inspirational to me, and through it all his wife kept her faith, her sense of humor and her compassion -- and never once became bitter despite this terrible curveball that life threw at their family.
Through the past three years, we kept in touch and whenever our schedules in Arkansas coincided, we tried to connect for dinner or a nice bottle of wine. We both found it comforting to run into each other at the clinic...we'd been in the trenches together.
At the end, Bruce remained responsive to the medicines that BB was cooking up for him, which included Carfilzomib. Unfortunately, en route to the clinic for treatment he suffered a cardiac event of some kind. Whether this was brought on by the disease, the treatment, the general run-down state in which he found himself or whether it was completely unrelated, is at this time unclear. What is clear, though, is that Bruce is no longer suffering.
I would like the thoughts and prayers of this little community, which played such a hugely beneficial part in my own therapy and recovery and which continues to inspire me on a weekly basis, to turn to Jan and the rest of the Bertsche family. We all lost a very good man.
God bless you, Jan. We love you.
Thursday, November 17, 2011
Overdue for a catchup...notes on three years post diagnosis, etc.
Howdy folks. Been busy as a beaver in my job, so I've been scarce around here. Sorry about that!
I've endured a couple of misadventures over the past few weeks. I had a nasty bout of what turned out to be gastroenteritis late last week that laid me up for a couple of days with pretty wretched abdominal pain. Not sure how I got it -- the family was all sick but I managed to avoid coming down with whatever they had...unless it got into the GI tract somehow.
Two days of Vicodin (one day of Oxycontin, since the Vicodin wasn't cutting it!) and some Levaquin and I felt better. Then it somehow came back three days later, this time for only 24 hours. It's now 48 hours behind me and hopefully not returning...
I've also learned that I've got some tiny pre-cancerous spots on my forehead. These are, I am told, normal in someone my age (43) and not in danger of being malignant, and that they are easily frozen off, with minimal chance of recurrence, and if they do return, it's unlikely they will become cancerous, and if they do become cancerous, they will almost certainly be benign rather than malignant. So I'm not terribly worried, and I shall attend to them soon.
I've also finished the Steve Jobs biography, which is fascinating...I will only say one thing to my dear curcumin friends...dietary stuff often doesn't work. Jobs tried it, hated the idea of pursuing aggressive treatment. And it was responsible, sounds like, for him not catching his tumor before it spread. Had he gone the Western medicine option, he might be alive today. The author strongly implies he regretted his decision.
Lastly, I suppose I should say something about the anniversary of my diagnosis, which came and went unheralded a few days ago. It's been an interesting, harrowing, enlightening, frightening, terrible and hopeful ride. Not a day goes by that I don't think of all the people that through this blog gave me support, kind words of encouragement and strength during the worst of it -- thank you all so much. And hardly a day goes by when I am not contacted by a newly diagnosed patient or a friend of a newly diagnosed patient. One of the great things in my life is counseling the newly-diagnosed...so please keep reaching out. If I can be helpful in any way, I want to be.
Overall...I feel good. I won't be sad to leave these medicines behind a year from now, but I've been through 2/3 of my maintenance program, and I do believe that a year from now, I will be cured. Not an operational cure, not it'll be back in six years, not "we'll wait and see." Cured, as it no more meds for Myeloma and a statistically insignificant chance of it ever returning. That's been the gambit.
Of course my hope is that before that time, a much less invasive cure arises...one that will leave me laughing ruefully at the need for tandem transplants and overjoyed that others will be able to be rid of this. That day will come, eventually. Let's hope it happens soon!
The next major milestone for me is my check-up in Arkansas in March, but I will be back before then, for sure. Happy Thanksgiving to you all!
I've endured a couple of misadventures over the past few weeks. I had a nasty bout of what turned out to be gastroenteritis late last week that laid me up for a couple of days with pretty wretched abdominal pain. Not sure how I got it -- the family was all sick but I managed to avoid coming down with whatever they had...unless it got into the GI tract somehow.
Two days of Vicodin (one day of Oxycontin, since the Vicodin wasn't cutting it!) and some Levaquin and I felt better. Then it somehow came back three days later, this time for only 24 hours. It's now 48 hours behind me and hopefully not returning...
I've also learned that I've got some tiny pre-cancerous spots on my forehead. These are, I am told, normal in someone my age (43) and not in danger of being malignant, and that they are easily frozen off, with minimal chance of recurrence, and if they do return, it's unlikely they will become cancerous, and if they do become cancerous, they will almost certainly be benign rather than malignant. So I'm not terribly worried, and I shall attend to them soon.
I've also finished the Steve Jobs biography, which is fascinating...I will only say one thing to my dear curcumin friends...dietary stuff often doesn't work. Jobs tried it, hated the idea of pursuing aggressive treatment. And it was responsible, sounds like, for him not catching his tumor before it spread. Had he gone the Western medicine option, he might be alive today. The author strongly implies he regretted his decision.
Lastly, I suppose I should say something about the anniversary of my diagnosis, which came and went unheralded a few days ago. It's been an interesting, harrowing, enlightening, frightening, terrible and hopeful ride. Not a day goes by that I don't think of all the people that through this blog gave me support, kind words of encouragement and strength during the worst of it -- thank you all so much. And hardly a day goes by when I am not contacted by a newly diagnosed patient or a friend of a newly diagnosed patient. One of the great things in my life is counseling the newly-diagnosed...so please keep reaching out. If I can be helpful in any way, I want to be.
Overall...I feel good. I won't be sad to leave these medicines behind a year from now, but I've been through 2/3 of my maintenance program, and I do believe that a year from now, I will be cured. Not an operational cure, not it'll be back in six years, not "we'll wait and see." Cured, as it no more meds for Myeloma and a statistically insignificant chance of it ever returning. That's been the gambit.
Of course my hope is that before that time, a much less invasive cure arises...one that will leave me laughing ruefully at the need for tandem transplants and overjoyed that others will be able to be rid of this. That day will come, eventually. Let's hope it happens soon!
The next major milestone for me is my check-up in Arkansas in March, but I will be back before then, for sure. Happy Thanksgiving to you all!
Monday, October 10, 2011
Quick observation on Velcade...
So I was out of the country last week and for the first time in two years of maintenance, missed a Velcade infusion. I'm told I'm allowed to do that twice a year and remain on protocol, so no biggie.
However, I did notice I did not have gastroparesis. Thus, my brilliant powers of deduction lead me to conclude that it is Velcade, and not Revlimid or Dex, that is the culprit.
This may be of use the others, hence my posting it. I have a checkup with my local onc tomorrow and will post whatever news is merited!
However, I did notice I did not have gastroparesis. Thus, my brilliant powers of deduction lead me to conclude that it is Velcade, and not Revlimid or Dex, that is the culprit.
This may be of use the others, hence my posting it. I have a checkup with my local onc tomorrow and will post whatever news is merited!
Tuesday, September 27, 2011
Belated reporting of last checkup
Where has the time gone? Children are back in school, my band (a time-consuming project) has been rehearsing for a brief European tour of sorts, and my job remains a demanding one. Life is busy!
I had a good checkup in Arkansas. I remain in complete remission. But it wasn't a perfect one.
First, there was a brief scare when my bone marrow biopsy came back with 13% plasma cells in the aspirate, 10% in the core. Recall, gentle readers, that the core marrow is more important since that is where new cells are being generated.
At any rate, such a level of plasma cells was deemed "abnormal plasmacytosis" on my chart, with several studies still ongoing. The core was negative for myeloma, so that much was good...but I didn't like the number of plasma cells.
I was pretty unnerved for about an hour until the physician's assistant CR came in and said it was likely high because I was recovering from a cold. He had a cold himself, and suggested that his plasma cells were probably 30% right now. Even as I exhaled, my mind went back to a conversation with Kathy Giusti from around my diagnosis where she had said that it's a bad idea to have a blood test, even, when you have a cold since immunoglobins all shoot up at that time. Well, the blood was negative for Myeloma, and it all looked good. But I think there was some residual reaction from my immune system, hence the plasma cells. In any case, no big deal.
I was somewhat saddened, though, to look at the MRI and see that the last four little lesions in my spine are stable -- I was hoping they would fully resolve. BB was somewhat perturbed by this same thing. So he prescribed more Zometa. I'll return in six months, and we'll see what things look like then. In the meantime, I'll continue to get my cancer markers every two weeks from the lab out here. I anticipate there'll be nothing of note.
Twelve more months of maintenance, hopefully, and then we'll see how to transition off drugs and what my immune system looks like. Will I be on Acyclovir for the rest of my life? Will I need to be reimmunized? Can I expect my immune system to recover and behave normally? Interesting and important questions for a Myeloma patient.
There's more to report but work calls...so I'll fill you in on the other stuff in the days ahead.
I had a good checkup in Arkansas. I remain in complete remission. But it wasn't a perfect one.
First, there was a brief scare when my bone marrow biopsy came back with 13% plasma cells in the aspirate, 10% in the core. Recall, gentle readers, that the core marrow is more important since that is where new cells are being generated.
At any rate, such a level of plasma cells was deemed "abnormal plasmacytosis" on my chart, with several studies still ongoing. The core was negative for myeloma, so that much was good...but I didn't like the number of plasma cells.
I was pretty unnerved for about an hour until the physician's assistant CR came in and said it was likely high because I was recovering from a cold. He had a cold himself, and suggested that his plasma cells were probably 30% right now. Even as I exhaled, my mind went back to a conversation with Kathy Giusti from around my diagnosis where she had said that it's a bad idea to have a blood test, even, when you have a cold since immunoglobins all shoot up at that time. Well, the blood was negative for Myeloma, and it all looked good. But I think there was some residual reaction from my immune system, hence the plasma cells. In any case, no big deal.
I was somewhat saddened, though, to look at the MRI and see that the last four little lesions in my spine are stable -- I was hoping they would fully resolve. BB was somewhat perturbed by this same thing. So he prescribed more Zometa. I'll return in six months, and we'll see what things look like then. In the meantime, I'll continue to get my cancer markers every two weeks from the lab out here. I anticipate there'll be nothing of note.
Twelve more months of maintenance, hopefully, and then we'll see how to transition off drugs and what my immune system looks like. Will I be on Acyclovir for the rest of my life? Will I need to be reimmunized? Can I expect my immune system to recover and behave normally? Interesting and important questions for a Myeloma patient.
There's more to report but work calls...so I'll fill you in on the other stuff in the days ahead.
Wednesday, September 21, 2011
A very cool dialogue with an online MM presence treated very differently than I...
Hello folks. I will shortly be giving you an update on my visit to Arkansas last week (which was good, still in complete remission, a couple of mildly unsettling things to report but nothing major).
But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment. Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc. I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment. I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.
Anyhow, what set this apart was not so much the questions but the other person doing the answering. As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson. I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment. David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about. I remember David being a fan of alternative medicine. I've joked before that the three approaches to treatment are: cure, control and curcumin! But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.
David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry). David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel). But we couldn't have arrived there more differently. David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy. He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.
Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy. I'll spare you the counterarguments. Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.
I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation. Wouldn't it be nice if we could make that happen in politics? :)
I'm a pragmatist. I'm much more likely to be cured of cancer than that is likely to happen. :)
But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment. Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc. I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment. I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.
Anyhow, what set this apart was not so much the questions but the other person doing the answering. As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson. I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment. David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about. I remember David being a fan of alternative medicine. I've joked before that the three approaches to treatment are: cure, control and curcumin! But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.
David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry). David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel). But we couldn't have arrived there more differently. David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy. He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.
Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy. I'll spare you the counterarguments. Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.
I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation. Wouldn't it be nice if we could make that happen in politics? :)
I'm a pragmatist. I'm much more likely to be cured of cancer than that is likely to happen. :)
Thursday, September 1, 2011
Dosing to keep the ol' GI tract working...
After last week's disaster, I figured I must be doing it wrong.
I looked at my bottle of Reglan (so funny that I thought it was Ragalin, most likely because of the folksy pronunciation in Arkansas!) and checked the dosing instruction. It was carried over from when it was prescribed to me as anti-nausea (probably coming out of a bone marrow or something with anesthesia) where it said to take one pill the night before "your procedure" and another the next day.
Because of this imprecise instruction, and based on the suggestion of JA, one of the physician assistants, I had taken one on Tuesday evenings (with my dex) and one the next morning, and one the next night.
This approach failed miserably last week.
So I use the Google Machine on the Interwebs and found that when prescribed for gastroparesis (med-speak for "gut shuts down") one takes one pill 30 minutes before each meal, then again at bedtime.
I tried that approach this week, and it seemed to work better than last week, certainly.
In other news, fraternizing with the children of other parents for a few days in a family resort has led to me getting sick. No big surprise there. I am hoping I caught it early enough and started taking Tamiflu in time to cut off bronchitis. So far, day three of sickness, just a tiny dry cough to go with the nasal stuffiness, swollen glands and sore throat. Time will tell.
There is a silver lining, though: proof positive that I must continue my policy of avoiding the enormous fair at my daughter's school!
I looked at my bottle of Reglan (so funny that I thought it was Ragalin, most likely because of the folksy pronunciation in Arkansas!) and checked the dosing instruction. It was carried over from when it was prescribed to me as anti-nausea (probably coming out of a bone marrow or something with anesthesia) where it said to take one pill the night before "your procedure" and another the next day.
Because of this imprecise instruction, and based on the suggestion of JA, one of the physician assistants, I had taken one on Tuesday evenings (with my dex) and one the next morning, and one the next night.
This approach failed miserably last week.
So I use the Google Machine on the Interwebs and found that when prescribed for gastroparesis (med-speak for "gut shuts down") one takes one pill 30 minutes before each meal, then again at bedtime.
I tried that approach this week, and it seemed to work better than last week, certainly.
In other news, fraternizing with the children of other parents for a few days in a family resort has led to me getting sick. No big surprise there. I am hoping I caught it early enough and started taking Tamiflu in time to cut off bronchitis. So far, day three of sickness, just a tiny dry cough to go with the nasal stuffiness, swollen glands and sore throat. Time will tell.
There is a silver lining, though: proof positive that I must continue my policy of avoiding the enormous fair at my daughter's school!
Sunday, August 28, 2011
Thoughts on two years of maintenance...full list of side effects, meds, etc.
Hello friends. Sorry to take so long between posts but there's been precious little to update you on and I don't want to just blabber without having a point! : )
On Tuesday I start the last week of the 24th cycle of maintenance, which means in a few days I will have finished two years of drugs. Velcade, Revlimid and Dex as most of you know, are the three primary agents. On top of this I add host of drugs for supportive care, as follows:
This is without a doubt the worst of the side effects of my treatment. And the last time I was in Arkansas, they suggested I take Ragalin / Metaclopramide, which is used to treat gastroparesis. I have taken one pill the evening I take Dex, then one pill the next morning and evening, and again the next morning and evening.
Sometimes this works.
This last week, while on vacation with the family, it did not.
I found myself with the worst vomiting and nausea I've had at any point since diagnosis, which took me out of commission from 3PM in the afternoon through the next morning. I couldn't even keep down the antinausea pill. It was pretty rough.
I will take this up with the good folks in Arkansas when I see them a little more than two weeks from now. Hopefully they will come up with an alternative that works better.
I receive 2.5ml per week of Velcade. Times 100 infusions, that means...gadzooks...2500ml of Velcade. Have I really had 2.5 LITERS of this stuff pumped into me by now?
Toward what end, one might ask?
Well...
Okay, not the first time I have shown this slide. I'm now at the 2 year point of CR, on the low-risk slope. About 92% of people, having reached complete remission under Total Therapy 3 (which includes Velcade) are still in remission at this point. At around year 3.5, the line flattens out. I will get an update on this chart, which is a couple of years old, when I get to Arkansas but the point is: if it hasn't come back by year 4, it ain't coming back. About 89% of people that are low-risk and who reach complete remission are cured.
If I take 89/92, that's 96.7%. So as of now, I have a 96.7% chance of being cured. Pretty damn good odds, I'd say!
So that's why I continue. One more year of this and hopefully I'm done...although frankly I wouldn't mind continuing to the 3.5 year point because that when it fully flattens out. But doing so will require them to find a better solution for my gastroparesis / barfitis.
On Tuesday I start the last week of the 24th cycle of maintenance, which means in a few days I will have finished two years of drugs. Velcade, Revlimid and Dex as most of you know, are the three primary agents. On top of this I add host of drugs for supportive care, as follows:
- Revlimid suppresses the immune system and leaves me susceptible to shingles. Therefore I take daily Acyclovir.
- Revlimid can cause peripheral neuropathy. Therefore I take daily MetaNX, a variety of B vitamins that have been shown to reduce neuropathy among Alzheimer's patients.
- Revlimid can causes blood clots, or deep vein thrombosis. Therefore I take daily aspirin as a preventative.
- Revlimid suppresses platelets. I don't take anything for this, but it is part of the reason which I take one week off the drug every four weeks -- to allow them to recover. I take the aspirin to thin the blood despite this thrombocytopenia (low platelets) because it evidently is a different type of clotting that causes DVT. At any rate, keep the low platelets in mind...
- Revlimid causes hideous leg cramps, which can be prevented through quinine (which I would strongly prefer, except that it suppresses platelets...so I don't go that route). The only other route is to take magnesium supplements. Through trial and error, I take 750mg of Magnesium a day. Any less than this and I run the risk of waking up at four in the morning with a rusty hook in my leg (or at least that's what it feels like). 750mg of Magnesium a day is essentially like finishing the day with three shots of a powerful laxative. Every day.
- Dexamethsone causes pretty severe acid reflux, so I take Pantoprazole as needed (usually the night I take Dex and the following night) to keep this at bay.
- Dex also keep one awake, so I take Ambien or Ativan / Lorazepam 1-2 nights a week to ensure I get a decent night's sleep
- Which leaves Velcade. Velcade causes flu-like symptoms, nausea, etc. and generally the Dex (in addition to fighting Myeloma) helps to offset these symptoms by suppressing immune response so you don't get the fever as much, don't get the swelling, aching, etc. that comes with the flu, etc.
- Velcade, though, I have found, shuts off my digestive system. This is not particularly unusual, I am told. In fact, I just learned there is a name for it: gastroparesis. But I get the infusion on Tuesday afternoon and I find that by Wednesday, things have shut down, and they don't resume until Friday AM. That means anything I eat Wednesday or Thursday sits in my stomach, undigested, making me feel horribly bloated.
This is without a doubt the worst of the side effects of my treatment. And the last time I was in Arkansas, they suggested I take Ragalin / Metaclopramide, which is used to treat gastroparesis. I have taken one pill the evening I take Dex, then one pill the next morning and evening, and again the next morning and evening.
Sometimes this works.
This last week, while on vacation with the family, it did not.
I found myself with the worst vomiting and nausea I've had at any point since diagnosis, which took me out of commission from 3PM in the afternoon through the next morning. I couldn't even keep down the antinausea pill. It was pretty rough.
I will take this up with the good folks in Arkansas when I see them a little more than two weeks from now. Hopefully they will come up with an alternative that works better.
I receive 2.5ml per week of Velcade. Times 100 infusions, that means...gadzooks...2500ml of Velcade. Have I really had 2.5 LITERS of this stuff pumped into me by now?
Toward what end, one might ask?
Well...
Okay, not the first time I have shown this slide. I'm now at the 2 year point of CR, on the low-risk slope. About 92% of people, having reached complete remission under Total Therapy 3 (which includes Velcade) are still in remission at this point. At around year 3.5, the line flattens out. I will get an update on this chart, which is a couple of years old, when I get to Arkansas but the point is: if it hasn't come back by year 4, it ain't coming back. About 89% of people that are low-risk and who reach complete remission are cured.
If I take 89/92, that's 96.7%. So as of now, I have a 96.7% chance of being cured. Pretty damn good odds, I'd say!
So that's why I continue. One more year of this and hopefully I'm done...although frankly I wouldn't mind continuing to the 3.5 year point because that when it fully flattens out. But doing so will require them to find a better solution for my gastroparesis / barfitis.
Wednesday, July 6, 2011
Embrace your inner biting monkey
I've met many very interesting people in my line of work, but few are more interesting than my friend Dr. EH.
Dr. EH (his Ph.D is in something related to neuroscience) was formerly a very senior R&D technologist at the company for whom I work. He then went on to a very senior position in the US intelligence community. Now he does some consulting with us and I have the opportunity to chat with him every now and then about everything from technology at our company to some of what's going on in Iraq and Afghanistan (the declassified portions!). I had the pleasure of having lunch with him yesterday.
Another colleague at work has been through much more, cancer-wise, than I or, really, most people. About 20 years ago he was diagnosed with a type of cancer (don't know what, exactly, but it affected his esophagus, jaw / neck, tongue, throat, etc.) that was Stage 4, metastatic and very nasty. He went through a number of experimental procedures and has beaten it. And he's now working with the doctor at Sloan Kettering who saved his life to put together a program to help doctors communicate better with their patients that are diagnosed with cancer. EH is working with them both on this project.
So yesterday EH asked me my thoughts on the matter. He wondered, for example, if information was enough, or if a doctor needed to let a patient work through the emotional response for a few days before absorbing any more -- unless of course it's something like AML where you need immediate treatment (as in check the person into a hospital and administer chemo that day).
It's a complicated question, I told him, and it depends on the type of cancer. A person diagnosed with advanced pancreatic cancer, where the outcome is dire and fairly certain, will have different needs than a person diagnosed with an early stage hard cell tumor that can be removed. And yet both of these situations are fairly cut and dry. In the middle, we have Myeloma, where no two doctors seemingly agree on exactly what to do -- in fact doctors can't even agree on whether or not it is curable. There aren't many who believe it is, and yet BB sees more Myeloma than any doctor anywhere in the world. Consider that for a moment: more than any doctor anywhere in the world. He has 20-30 new patients a week. My diagnosing doctor SH, who is by all accounts a very good hematologist who sees a fair amount of Myeloma, told me he does maybe 10 transplants a year. Barlogie and his team do literally hundreds.
I digress...
Anyhow, another part of the challenge is the subjectivity involved in parsing the information. Quality of life, for example, is an extremely subjective measure. For me, while I've got to take these meds and while I've got side effects (including insomnia on dex nights, which explains my 3:30AM blogging) they are totally manageable and don't affect my quality of life that much. I have a good quality of life -- though certainly I look forward to being off meds and having an even better quality of life. But others would view my weekly dosage of Velcade, my daily Revlimid and my weekly Dex -- all of which do have side effects -- as a not-so-great quality of life. Some would certainly view my having to move 2,000 miles away for six months as a big hit to quality of life -- and I would agree. But it was six months, and tolerable. Others' mileage may vary...everyone answers these questions differently based on their own experiences, their own expectations from life, their attitudes, belief systems, age, etc.
I'd be very interested in knowing, from those of you who have contended with a diagnosis of Myeloma or any kind of cancer, what was or would have been helpful for you to hear when you were diagnosed...in terms of assisting you with understanding your diagnosis, coming to terms with it, and making decisions.
But that's only part of this post. We talked, then, about attitudes and how they impact treatment outcomes. I told EH that despite my being a spiritual person, I believe the brain is just another organ in the body, and one's attitude is therefore directly linked into the rest of the system. A brain set to kick the hell out of cancer versus a brain resigned to succumbing to it will have an impact on how the rest of the body handles treatment.
EH said that we definitively know this to be true -- that the brain is physiologically linked to the immune response, for example. This made me think about letting down my immune system which I'm sure led to my cancer, but also to being shaken awake and being resolved to handle whatever treatment dished out and to beat my Myeloma. So far, so good -- and I'm very fortunate that I've responded as well as I have to treatment because it's one thing to have confidence when things are working, and another to have confidence when they're not working so well. I had a few days of doubt -- search my blog for the phrase "noonday devil" -- when I wasn't seeing the markers go down. And those days were not fun. So once again, I am humbled by the grace of others who deal with more dire prognoses than I.
EH then said -- and I apologize to any animal-lovers, because I also felt a twinge when he said this -- that "in the course of my training, I've operated on a lot of monkeys. Some of them, when they came out of surgery, were just kind of down and depressed. They didn't last too long. But others, when they emerged from anesthesia...their first act was to try to bite you." He smiled. "Those ones tended to be okay."
So the message: be the angry, biting monkey in the face of cancer. Not the depressed, resigned monkey.
I have a friend going through a transplant right now, and another friend who is going to do one later this year after another surgery -- so this means you, guys!
In discussing this with EH, I observed that in my own case, I never allowed myself to believe I was going to die from Myeloma. I was certainly helped by finding a doctor who believed he could cure me, and, as noted, by my response to therapy. I wonder, also, where the Kubler-Ross "denial" stage of dealing with a crisis ends, and where my resolve in the face of diagnosis began. Was I perhaps just mired in the denial stage the whole time? Who knows.
I think about something like a transplant...how the book I read when I was diagnosed treated it as this monolithic, dreadful / awesome event and how I will consider it "my birthday." I contrast that with my approach: but for this blog and a good quantitative recall of things related to my therapy, I couldn't tell you my transplants were. My birthday is the same as it's been for 43 years. My transplant date isn't my birthday any more than my hernia surgery was, and probably less so than my LASIK procedure on my eyes. Similarly, I remember the attitude of one of the nurses in the infusion center: "Ah, melphalan's no big deal." No big deal. You can do it. You're bigger than cancer. The angry monkey is too cool to fret about a little chemo. The angry monkey has some swagger to him.
But EH also pointed out something important: cancer has a vote, too. He lost his wife to cancer -- and she was strong-willed, did not allow herself to believe she was going to die, and fought like hell. And it didn't matter. So resolve only goes so far. That, also, is humbling.
So where does that leave us? Well, everyone is different. I saw people in the clinic that didn't want to know what they had, didn't have any tolerance for understanding what treatment entailed or what the statistics behind the program where, and had no hope. I saw people like myself who took a different approach. I think, all else being equal, those who took an empowered approach have and will fare better. But "all else being equal" is a very big qualifier, indeed.
Food for thought.
As for me, I find myself of late disliking the side effects of my meds, but reminding myself with each swallow of Revlimid and Dex to mentally think "[expletive deleted] you, cancer!" before I swallow these pills. Whatever discomfort they cause me, it's 100X worse for whatever rogue cells I've got kicking around inside me. Although they don't show up on any tests, I've got somewhere between 100,000 and 1 billion cells (probably much closer to the first number now) that aren't with the program. So to hell with them.
And that's enough out of this angry monkey for the day.
Thursday, June 23, 2011
Two Musketeers and a Guy with a Wet Hacking Cough
Years ago, that was an entry on a David Letterman Top 10 list for "least favorite candy bars." I remember the #1 entry was Johnny Bench's Nut Clumps.
Anyhow, I feel like that third guy and have for some time. There was a bad cold going around the office, and my adorable little boy Carson was coughing, and it was just a matter of time until my immune system gave way. I'm not complaining -- I've been very fortunate in that I've not been sick this year, I don't think, and considering both my kids and my wife have had the stomach flu and I was helping my poor son with his uncontrollable vomiting at 2AM, I'm damn lucky that I didn't get that.
So a bad bronchial condition that probably went from bronchitis to pneumonia is a mild issue, really. I got a course of amoxycillin from the good folks at UAMS and that's more or less knocked it out. I was out of Tamiflu when I first started getting the scratchy throat and had that not been the case, I might've knocked it out before it got bad. Note to self: always keep Tamiflu on hand.
Minor problem with that: insurance doesn't cover it. And it's about $100 for a 10-pill box. Gulp. So it's $50 to get rid of a bad cold quickly, essentially. Probably worth it in the grand scheme of things.
Anyhow, it's on the way out now, though it's been here for about 10 days and I'd love it to be gone now, thankyouverymuch.
In other news, I decided to be a bit more militant about taking Ragalin -- an anti-nausea drug that supposedly also keeps the digestive track rolling -- whilst taking my reduced dose of Dex (down to 8mg a week). I tried this the previous week and it didn't really help. I still had the feeling that anything I ate from Wednesday AM was still in my stomach come Friday morning. It's a rotten feeling, believe me.
But this week, I took a Ragalin with Dex on Tuesday night, another one Wednesday morning, and another one last night and I don't feel nearly as distended and gross as I did the previous week. Of course I'm also taking magnesium pills for the Revlimid-induced cramps, and the magnesium does ward off constipation brought on my the combination of antibiotics, Velcade, Revlimid and dex. Incidentally what could be gently called "ward off constipation" on Tuesday and Wednesday night becomes "turns you into a booster rocket gripping the toilet seat for dear life" by Thursday. But then these are minor things compared to the leg cramps so I've adjusted to the new normal.
15 more months to go, give or take. Although frankly I wouldn't mind sticking on this stuff another year since the longer I stay on it, the more definitive the cure signature is. I'm sure I could go off it after 3 years, since that's what BB says is enough. Yet I also learned from my last dinner with BJ that there are people alive post TT2 and TT1 20 years later who are taking Thalidomide despite the fact that it's certainly lost its effectiveness.
I'll worry about abandoning my security blanket when the time comes. As alluring as the final endgame to this interesting if undesirable match of GI chess has been for the last 26 months, I wouldn't mind saying goodbye to it!
Anyhow, I feel like that third guy and have for some time. There was a bad cold going around the office, and my adorable little boy Carson was coughing, and it was just a matter of time until my immune system gave way. I'm not complaining -- I've been very fortunate in that I've not been sick this year, I don't think, and considering both my kids and my wife have had the stomach flu and I was helping my poor son with his uncontrollable vomiting at 2AM, I'm damn lucky that I didn't get that.
So a bad bronchial condition that probably went from bronchitis to pneumonia is a mild issue, really. I got a course of amoxycillin from the good folks at UAMS and that's more or less knocked it out. I was out of Tamiflu when I first started getting the scratchy throat and had that not been the case, I might've knocked it out before it got bad. Note to self: always keep Tamiflu on hand.
Minor problem with that: insurance doesn't cover it. And it's about $100 for a 10-pill box. Gulp. So it's $50 to get rid of a bad cold quickly, essentially. Probably worth it in the grand scheme of things.
Anyhow, it's on the way out now, though it's been here for about 10 days and I'd love it to be gone now, thankyouverymuch.
In other news, I decided to be a bit more militant about taking Ragalin -- an anti-nausea drug that supposedly also keeps the digestive track rolling -- whilst taking my reduced dose of Dex (down to 8mg a week). I tried this the previous week and it didn't really help. I still had the feeling that anything I ate from Wednesday AM was still in my stomach come Friday morning. It's a rotten feeling, believe me.
But this week, I took a Ragalin with Dex on Tuesday night, another one Wednesday morning, and another one last night and I don't feel nearly as distended and gross as I did the previous week. Of course I'm also taking magnesium pills for the Revlimid-induced cramps, and the magnesium does ward off constipation brought on my the combination of antibiotics, Velcade, Revlimid and dex. Incidentally what could be gently called "ward off constipation" on Tuesday and Wednesday night becomes "turns you into a booster rocket gripping the toilet seat for dear life" by Thursday. But then these are minor things compared to the leg cramps so I've adjusted to the new normal.
15 more months to go, give or take. Although frankly I wouldn't mind sticking on this stuff another year since the longer I stay on it, the more definitive the cure signature is. I'm sure I could go off it after 3 years, since that's what BB says is enough. Yet I also learned from my last dinner with BJ that there are people alive post TT2 and TT1 20 years later who are taking Thalidomide despite the fact that it's certainly lost its effectiveness.
I'll worry about abandoning my security blanket when the time comes. As alluring as the final endgame to this interesting if undesirable match of GI chess has been for the last 26 months, I wouldn't mind saying goodbye to it!
Wednesday, June 15, 2011
Vanity, a caution against supplements and a thankful false alarm
Hello peeps.
It's my birthday today...43. Since I was diagnosed at 40 and had no idea if I would reach 43, I'm a pretty happy camper, despite a grueling work schedule that has not permitted me much time for anything recently, including updates.
But yesterday, I had quite a scare for a little bit, and thought it was something that some of you might learn from. Don't be me, basically!
I've counseled some friends going through myeloma treatment -- they know who they are if they are reading this -- that they shouldn't worry about silly little things like losing your hair. Whether you want to pursue cure or control, effective treatment of progressive disease will at some point involve a transplant. I say that with the knowledge of Dr. JB's position. It doesn't change my opinion one iota. And my comment to my friends is thus: hair grows back, the disease absent treatment will kill you, wear a freakin' hat for six months for pete's sake and deal with it. It's not a big deal.
Having said that, one of the side effects of dex is weight gain. I got pretty tubby after about nine months and two transplants and so I rededicated myself to eating better and drinking water instead of wine (some of the time!) and that helped, but I also started taking a supplement called 7-KETO that supposedly boosts metabolism. This helped, I think -- or perhaps it was placebo effect -- but I lost about 20 pounds and have kept it off and while I'm not yet where I want to be, it's a noticeable improvement. I know this because Dr. BB no longer says "let's call it what it is: you're fat!" when he sees me. (Note: he actually said this, verbatim!) Now, he says I look great. And we know BB is honest to a fault, so there you go.
I checked with one of the physician assistants at UAMS before starting this supplement of course. He was not familiar with it but I explained what it was, using the description of ingredients from Amazon, and he said it sounded fine.
Six months later and several re-orders of the pills later (taking them twice a day), I did a larger re-order on Amazon. The pills arrived, and they were slightly larger and a different color. I popped one and then decided to take a look to make sure they hadn't changed the formulation -- that the size and color were simply because they were a larger dose or something.
This pill, I was MORTIFIED to read, contained a large amount of green tea extract. Now I know green tea is the one thing I'm not supposed to have since it's contraindicated while on Velcade. But I thought it might inhibit absorption of the Velcade on the day of administration, or perhaps increase nausea or something like that. So I did a little research and became even MORE mortified. From Blood magazine, the mellifluously-titled publication of the Hematology gang, I learned that green tea extract appears to basically BLOCK the anti-cancer effects of Velcade.
My normally calm heart decided to skip a few beats. Have I been taking pills that counter the effect of one of the primary reasons I'm hopefully going to be cured? Have I mangled the maintenance program that has been delivering cures? Is the data that I've seen now invalidated because I've basically been off Velcade FOR SIX MONTHS!!!???!!!
I called BJ and she was reassuring. Green tea reduces efficacy of Velcade, and I should stop taking the pills, but I shouldn't panic. BB said the same thing. But with all due respect and love to them, they're not the ones who may have been not getting the benefit of the Velcade for six months. So my level of alarm was reduced from panic to concern.
I then wanted to go to Amazon to see exactly how long I'd been taking this stuff. And here's where things THANKFULLY turned out okay. As I was going through my back orders, I clicked on one of them. And it's VERY subtly different. One (the one I've been taking) is 7-KETO. The new one I ordered is 7-KETO Lean. The only difference in the two...is that the original does not include green tea.
THANK GOD.
Now I will probably stop taking ANY supplements until I am done with my treatment, because nobody knows what this crap will do to you, really, particularly if your body is dependent on delicate chemical reactions to kill certain cells while leaving others intact. The only supplement I continue to take is UAMS-approved for neuropathy. It's a compound of B vitamins called Metanx that has been shown to reduce neuropathy in Alzheimer's patients. So I'm fine with that.
Other supplements be damned. Sorry Margaret and Don! :) I'm all in with Western Medicine on this trip. Not that I won't get some curcumin along the way as I like dishes prepared with it. :)
Learn from me, people. Be careful what you eat, and don't let vanity get in the way of your most effective battling against this disease.
And with that, I'm off to celebrate my birthday with Jill, drinking wine and not water...but staying away from anything with green tea in it. : )
It's my birthday today...43. Since I was diagnosed at 40 and had no idea if I would reach 43, I'm a pretty happy camper, despite a grueling work schedule that has not permitted me much time for anything recently, including updates.
But yesterday, I had quite a scare for a little bit, and thought it was something that some of you might learn from. Don't be me, basically!
I've counseled some friends going through myeloma treatment -- they know who they are if they are reading this -- that they shouldn't worry about silly little things like losing your hair. Whether you want to pursue cure or control, effective treatment of progressive disease will at some point involve a transplant. I say that with the knowledge of Dr. JB's position. It doesn't change my opinion one iota. And my comment to my friends is thus: hair grows back, the disease absent treatment will kill you, wear a freakin' hat for six months for pete's sake and deal with it. It's not a big deal.
Having said that, one of the side effects of dex is weight gain. I got pretty tubby after about nine months and two transplants and so I rededicated myself to eating better and drinking water instead of wine (some of the time!) and that helped, but I also started taking a supplement called 7-KETO that supposedly boosts metabolism. This helped, I think -- or perhaps it was placebo effect -- but I lost about 20 pounds and have kept it off and while I'm not yet where I want to be, it's a noticeable improvement. I know this because Dr. BB no longer says "let's call it what it is: you're fat!" when he sees me. (Note: he actually said this, verbatim!) Now, he says I look great. And we know BB is honest to a fault, so there you go.
I checked with one of the physician assistants at UAMS before starting this supplement of course. He was not familiar with it but I explained what it was, using the description of ingredients from Amazon, and he said it sounded fine.
Six months later and several re-orders of the pills later (taking them twice a day), I did a larger re-order on Amazon. The pills arrived, and they were slightly larger and a different color. I popped one and then decided to take a look to make sure they hadn't changed the formulation -- that the size and color were simply because they were a larger dose or something.
This pill, I was MORTIFIED to read, contained a large amount of green tea extract. Now I know green tea is the one thing I'm not supposed to have since it's contraindicated while on Velcade. But I thought it might inhibit absorption of the Velcade on the day of administration, or perhaps increase nausea or something like that. So I did a little research and became even MORE mortified. From Blood magazine, the mellifluously-titled publication of the Hematology gang, I learned that green tea extract appears to basically BLOCK the anti-cancer effects of Velcade.
My normally calm heart decided to skip a few beats. Have I been taking pills that counter the effect of one of the primary reasons I'm hopefully going to be cured? Have I mangled the maintenance program that has been delivering cures? Is the data that I've seen now invalidated because I've basically been off Velcade FOR SIX MONTHS!!!???!!!
I called BJ and she was reassuring. Green tea reduces efficacy of Velcade, and I should stop taking the pills, but I shouldn't panic. BB said the same thing. But with all due respect and love to them, they're not the ones who may have been not getting the benefit of the Velcade for six months. So my level of alarm was reduced from panic to concern.
I then wanted to go to Amazon to see exactly how long I'd been taking this stuff. And here's where things THANKFULLY turned out okay. As I was going through my back orders, I clicked on one of them. And it's VERY subtly different. One (the one I've been taking) is 7-KETO. The new one I ordered is 7-KETO Lean. The only difference in the two...is that the original does not include green tea.
THANK GOD.
Now I will probably stop taking ANY supplements until I am done with my treatment, because nobody knows what this crap will do to you, really, particularly if your body is dependent on delicate chemical reactions to kill certain cells while leaving others intact. The only supplement I continue to take is UAMS-approved for neuropathy. It's a compound of B vitamins called Metanx that has been shown to reduce neuropathy in Alzheimer's patients. So I'm fine with that.
Other supplements be damned. Sorry Margaret and Don! :) I'm all in with Western Medicine on this trip. Not that I won't get some curcumin along the way as I like dishes prepared with it. :)
Learn from me, people. Be careful what you eat, and don't let vanity get in the way of your most effective battling against this disease.
And with that, I'm off to celebrate my birthday with Jill, drinking wine and not water...but staying away from anything with green tea in it. : )
Monday, May 23, 2011
The actual meeting with BB...
So as happens on these visits, my last scheduled appointment was with BB. I got to the clinic, met first with a research nurse who made sure all my medication records were being kept accurately, reported my minimal side effects, etc. I snuck a peek at my labs, reviewing my MRI and bloodwork and bone marrow (all good). I then met with the terrific physician's assistant JA to go over all of this before being summoned to the 4th floor and my consult with BB.
While there, I met a lovely couple who were monitoring the husband's MGUS. They had not yet begun any kind of treatment and had a few questions which I was happy to answer -- and I referred them to this little page so if you Longhorns are reading, hello! : )
Then I went into BB's office. When I get access to the photo I took, I'll post it here, which will further strip away anonymity for anyone who cares to look so it's almost ridiculous at this point to keep initializing him since anybody who is remotely interested (and if you aren't, not sure why you are reading!) could find out that it's Bart Barlogie so there it is: like the day when KISS decided to take off their makeup, I've revealed the name of my doctor.
Anyhow, I'll post the photo here when I have a moment.
Now, you've read some descriptions about BB here, and for those of you that I know, you've probably listened to me tell many stories about him -- always being kind not to tell me that I'm boring you! But I can't imagine this man is only of interest to me! My usual description of him is: "a 70-year-old German guy who rides a Ducati to the office and does his rounds in black leather biker pants and a dog collar." Sadly, he was wearing a different outfit on this particular day! Nonetheless, he is quite a character as my previous stories attest and as this one continues to affirm!
I entered his office. He looked at me, smiled, and say "hey there, a**hole!!!" and stood up and gave me a big hug and kiss. I couldn't help but tear up and frankly I am doing so as I type this. Some doctors are known for being detached -- two well-known doctors in this field are known for being rather cold, actually. BB, on the other hand, is emotionally invested in his patients. He and I are friends. I have mentioned before that I can see he is visibly effected -- saddened and tangibly angry at the disease and his inability to cure the most severe cases -- any time he loses a patient. The flipside is real joy and a lightness of being when he is able to put somebody on the path to a cure. Hence: "hey there, a**hole!!!" and the accompanying affection.
After introducing me to a colleague on rotation in from Greece (both a physician and the uncredited photographer behind the photo I shall post) he jumped into the file. The highlights:
* Bone marrow negative for plasma cell myeloma, with normal morphology. That means the right number of chromosomes, all in a nice little row.
* No trace of original M protein under immunofixation or SPEP.
* ALL BUT FOUR of the fourteen lesions in my bones have fully resolved. I had, upon diagnosis, two in my hip, one in a rib, one in the left scapula / shoulder, and TEN in different vertebrae. As of January, only two (shoulder and rib) had fully resolved. But now, all but four of them are completely resolved and the remaining four (two in my thoracic vertebrae, two in my cervical vertebrae) are small enough where their size is not noted (which means they are less than half a centimeter). Bart pointed out that UAMS is the only Myeloma center that tracks resolution of former lesions because their data suggests that recurrence can be linked in part to remaining focal lesions, even if inactive for cancer. So this is tremendous and important progress. My Zometa infusions were reduced from monthly to bi-monthly. We will see if he continues it once the bones are fully healed (as it does look like I will get there) as Zometa's anti-Myeloma properties may or may not extend beyond promoting bone healing.
* My Dex was reduced from 12mg weekly to 8mg weekly. This is the lowest amount that the protocol allows. I welcome the reduction and hopefully it will reduce the digestive issues that I get mid-week.
* I am to return in four months, and we'll see how it looks at that time but thereafter it seems likely that visits will be reduced to every six months. Which makes those Whole Hog sandwiches even more of a rare treat!
So there, friends, is the full update.
More news as is merited.
While there, I met a lovely couple who were monitoring the husband's MGUS. They had not yet begun any kind of treatment and had a few questions which I was happy to answer -- and I referred them to this little page so if you Longhorns are reading, hello! : )
Then I went into BB's office. When I get access to the photo I took, I'll post it here, which will further strip away anonymity for anyone who cares to look so it's almost ridiculous at this point to keep initializing him since anybody who is remotely interested (and if you aren't, not sure why you are reading!) could find out that it's Bart Barlogie so there it is: like the day when KISS decided to take off their makeup, I've revealed the name of my doctor.
Anyhow, I'll post the photo here when I have a moment.
Now, you've read some descriptions about BB here, and for those of you that I know, you've probably listened to me tell many stories about him -- always being kind not to tell me that I'm boring you! But I can't imagine this man is only of interest to me! My usual description of him is: "a 70-year-old German guy who rides a Ducati to the office and does his rounds in black leather biker pants and a dog collar." Sadly, he was wearing a different outfit on this particular day! Nonetheless, he is quite a character as my previous stories attest and as this one continues to affirm!
I entered his office. He looked at me, smiled, and say "hey there, a**hole!!!" and stood up and gave me a big hug and kiss. I couldn't help but tear up and frankly I am doing so as I type this. Some doctors are known for being detached -- two well-known doctors in this field are known for being rather cold, actually. BB, on the other hand, is emotionally invested in his patients. He and I are friends. I have mentioned before that I can see he is visibly effected -- saddened and tangibly angry at the disease and his inability to cure the most severe cases -- any time he loses a patient. The flipside is real joy and a lightness of being when he is able to put somebody on the path to a cure. Hence: "hey there, a**hole!!!" and the accompanying affection.
After introducing me to a colleague on rotation in from Greece (both a physician and the uncredited photographer behind the photo I shall post) he jumped into the file. The highlights:
* Bone marrow negative for plasma cell myeloma, with normal morphology. That means the right number of chromosomes, all in a nice little row.
* No trace of original M protein under immunofixation or SPEP.
* ALL BUT FOUR of the fourteen lesions in my bones have fully resolved. I had, upon diagnosis, two in my hip, one in a rib, one in the left scapula / shoulder, and TEN in different vertebrae. As of January, only two (shoulder and rib) had fully resolved. But now, all but four of them are completely resolved and the remaining four (two in my thoracic vertebrae, two in my cervical vertebrae) are small enough where their size is not noted (which means they are less than half a centimeter). Bart pointed out that UAMS is the only Myeloma center that tracks resolution of former lesions because their data suggests that recurrence can be linked in part to remaining focal lesions, even if inactive for cancer. So this is tremendous and important progress. My Zometa infusions were reduced from monthly to bi-monthly. We will see if he continues it once the bones are fully healed (as it does look like I will get there) as Zometa's anti-Myeloma properties may or may not extend beyond promoting bone healing.
* My Dex was reduced from 12mg weekly to 8mg weekly. This is the lowest amount that the protocol allows. I welcome the reduction and hopefully it will reduce the digestive issues that I get mid-week.
* I am to return in four months, and we'll see how it looks at that time but thereafter it seems likely that visits will be reduced to every six months. Which makes those Whole Hog sandwiches even more of a rare treat!
So there, friends, is the full update.
More news as is merited.
A very good checkup! (part 1 of 2)
Apologies for the delays in posting this, dear readers, but I've been frightfully busy with my day job.
Some highlights from the week prior to my meeting with BB:
* A lovely dinner with BJ at a restaurant I had not tried before, So. We discussed a few topics of interest:
- UAMS has been prescribing more Revlimid than anybody in the world to hundreds if not thousands of patients for a longer period of time than anybody in the world and has seen no incidence of increased secondary cancer. BJ attributes Celgene's own statistics to small sample size. My own opinion is guarded -- I don't like the fact that Celgene noticed anything, although I do understand that sample size can make a bit difference and UAMS has much better data than anybody in the world, and ultimately the risk is worth the reward as Revlimid plays a major role in the cure that I am pursuing.
- BJ notes that UAMS has been using maintenance therapy for 20 years, the first 18 of which were in the face of people saying it did no good, and that they view the recent broadening of acceptance of maintenance therapy with equal parts satisfaction and irritation.
- There are people who remain alive nearly 20 years after Total Therapy 1 (unlike current therapies, this is a small percentage) who are reluctant to discontinue their medications which include Thalidomide and Interferon. In the case of Thalidomide, its benefit is long since exhausted since any residual disease would have developed resistance to the drug by now. In the case of Interferon, it was never proven to be efficarious! Yet patients are afraid to change the regimen, particularly if they tolerate the therapy without side effect. BJ noted one patient in particular who is on a MAJOR dose of Thalidomide (over 1g a day!) who was reluctant to dose reduce even though the protocol at UAMS has been a fifth of that amount for years now. I wonder if I, myself, will be reluctant to dose reduce / discontinue medication after the three year mark when the vast majority of the "cure signature" has been determined. Or after the six year mark when recurrence rates are effectively zero. Hmm....
- I had previously succumbed to vanity and had a dermatologist in LA freeze off a single wart that had appeared on my right index finger. When this chap (no initials as I'm about to rip on him a bit) did that, he saw some as-yet-undeveloped naughty tissue around my fingernail so he froze that off as well. Except it came back so he froze it off again, and again, and told me to put this acidic cream on it, and trimmed the nail, etc. After all these treatments over a period of three months, the right side of the nail looks pretty unpleasant. The dermatologist out here thinks the nail matrix (the part of the body that produces the nail) has been scarred and will never work again and I'm going to have to have it surgically pared back and my fingernail will only be about 80% of the width that it should be -- forever). Mindful that the actor Roy Scheider had been successfully treated for Myeloma only to perish from complications that began with some kind of cellulitis, I asked BJ to look at the finger. She recommended I meet with a dermatologist at UAMS and would set up an appointment for me.
* I made the pilgrimage to Whole Hog BBQ for a delicious pulled pork sandwich. This is one of the things I miss about living in Little Rock. But frankly if I lived here full time I would probably be cured of Myeloma only to die of heart disease since these sandwiches are too good to resist! Behold the glory! (note: the "V" on the BBQ sauce denotes "Volcano" sauce which is so hot you have to get it from behind the counter rather than from the container of six different sauces on each table).
* I ran into J and B B (the other BB referenced a few posts ago) who looked great! Unfortunately, the next day they learned that their struggle continues...Pomalidomide (next generation Velcade) failed to deliver results and so now the Natural Killer cells are the next step, but the non-dr-BB has disease that has escaped the marrow and this must be eradicated before the NK cells can do their thing. I continue to be humbled by the strength and grace of people with this disease, particularly those with a more aggressive form than I.
* One advantage of having the MRI rejected by insurance is that I reduced it to only the essential stuff -- basically we are interested in tracking the resolution of my former "hot spots" so there's no need for MRIs of every other part of my body. As a result, I got in and out of that tube in about 40 minutes which beats the heck out of the 3+ hours (between the full body MRI and the separate bone marrow "DWIBS" scan) that it usually takes!
Okay, so to the important matter...well, actually my meeting with BB deserves its own post as this is getting rather long. : )
Some highlights from the week prior to my meeting with BB:
* A lovely dinner with BJ at a restaurant I had not tried before, So. We discussed a few topics of interest:
- UAMS has been prescribing more Revlimid than anybody in the world to hundreds if not thousands of patients for a longer period of time than anybody in the world and has seen no incidence of increased secondary cancer. BJ attributes Celgene's own statistics to small sample size. My own opinion is guarded -- I don't like the fact that Celgene noticed anything, although I do understand that sample size can make a bit difference and UAMS has much better data than anybody in the world, and ultimately the risk is worth the reward as Revlimid plays a major role in the cure that I am pursuing.
- BJ notes that UAMS has been using maintenance therapy for 20 years, the first 18 of which were in the face of people saying it did no good, and that they view the recent broadening of acceptance of maintenance therapy with equal parts satisfaction and irritation.
- There are people who remain alive nearly 20 years after Total Therapy 1 (unlike current therapies, this is a small percentage) who are reluctant to discontinue their medications which include Thalidomide and Interferon. In the case of Thalidomide, its benefit is long since exhausted since any residual disease would have developed resistance to the drug by now. In the case of Interferon, it was never proven to be efficarious! Yet patients are afraid to change the regimen, particularly if they tolerate the therapy without side effect. BJ noted one patient in particular who is on a MAJOR dose of Thalidomide (over 1g a day!) who was reluctant to dose reduce even though the protocol at UAMS has been a fifth of that amount for years now. I wonder if I, myself, will be reluctant to dose reduce / discontinue medication after the three year mark when the vast majority of the "cure signature" has been determined. Or after the six year mark when recurrence rates are effectively zero. Hmm....
- I had previously succumbed to vanity and had a dermatologist in LA freeze off a single wart that had appeared on my right index finger. When this chap (no initials as I'm about to rip on him a bit) did that, he saw some as-yet-undeveloped naughty tissue around my fingernail so he froze that off as well. Except it came back so he froze it off again, and again, and told me to put this acidic cream on it, and trimmed the nail, etc. After all these treatments over a period of three months, the right side of the nail looks pretty unpleasant. The dermatologist out here thinks the nail matrix (the part of the body that produces the nail) has been scarred and will never work again and I'm going to have to have it surgically pared back and my fingernail will only be about 80% of the width that it should be -- forever). Mindful that the actor Roy Scheider had been successfully treated for Myeloma only to perish from complications that began with some kind of cellulitis, I asked BJ to look at the finger. She recommended I meet with a dermatologist at UAMS and would set up an appointment for me.
* I made the pilgrimage to Whole Hog BBQ for a delicious pulled pork sandwich. This is one of the things I miss about living in Little Rock. But frankly if I lived here full time I would probably be cured of Myeloma only to die of heart disease since these sandwiches are too good to resist! Behold the glory! (note: the "V" on the BBQ sauce denotes "Volcano" sauce which is so hot you have to get it from behind the counter rather than from the container of six different sauces on each table).
* I ran into J and B B (the other BB referenced a few posts ago) who looked great! Unfortunately, the next day they learned that their struggle continues...Pomalidomide (next generation Velcade) failed to deliver results and so now the Natural Killer cells are the next step, but the non-dr-BB has disease that has escaped the marrow and this must be eradicated before the NK cells can do their thing. I continue to be humbled by the strength and grace of people with this disease, particularly those with a more aggressive form than I.
* One advantage of having the MRI rejected by insurance is that I reduced it to only the essential stuff -- basically we are interested in tracking the resolution of my former "hot spots" so there's no need for MRIs of every other part of my body. As a result, I got in and out of that tube in about 40 minutes which beats the heck out of the 3+ hours (between the full body MRI and the separate bone marrow "DWIBS" scan) that it usually takes!
Okay, so to the important matter...well, actually my meeting with BB deserves its own post as this is getting rather long. : )
Monday, May 16, 2011
Dateline: Arkansas
Hello folks. Sitting in a hospital bed waiting for my bone marrow team to show up. Figured this was as good a time as any for an update.
I was all set to fly out yesterday from LA but due to some last minute changes in travel, I forgot that I was no longer flying out of the same airport. Thus, I went to the wrong airport. I then had to scramble to find sn alternative but eventually made it into Little Rock around 11PM.
This morning, I had a minor victory when I went directly to the infusion center and had them access the port for the blood work. I ran into JB and her husband B, who has not yet started on the natural killer cells. Evidently the trial only permits one person per month and ine guy got in front of B. Meanwhile B was been put in Pomalidomide (next-gen Revlimid). They see BB tomorrow. Meanwhile we are going to hopefully have lunch tomorrow.
I then went over to the Myeloma institute where I saw BB's Ducati outside the main entrance. I almost snapped a picture. :)
After a quick consultation with CR and a quick visit with BJ (hopefully BB, his wife, BJ and I will have dinner this evening) I made my way over to the outpatient clinic.
Not much more to report yet, but I did want to mention one humorous (sort of) thing. One of the young nurses in the myeloma clinic who used to give me grief about getting conscious sedation for the bone marrow biopsy got into the elevator with me. I asked how the storms that have ravaged the south these last few weeks had impacted Arkansas (there are been tornados, for example).
She said everybody was okay but their barn was damaged and her husband's work was disrupted. He is, I was told, a taxidermist.
I have a vision now of a man running from a small funnel cloud populated with the swirling carcasses of dead squirrels and possums....
More news when I get my labs and MRI results back later this week.
I was all set to fly out yesterday from LA but due to some last minute changes in travel, I forgot that I was no longer flying out of the same airport. Thus, I went to the wrong airport. I then had to scramble to find sn alternative but eventually made it into Little Rock around 11PM.
This morning, I had a minor victory when I went directly to the infusion center and had them access the port for the blood work. I ran into JB and her husband B, who has not yet started on the natural killer cells. Evidently the trial only permits one person per month and ine guy got in front of B. Meanwhile B was been put in Pomalidomide (next-gen Revlimid). They see BB tomorrow. Meanwhile we are going to hopefully have lunch tomorrow.
I then went over to the Myeloma institute where I saw BB's Ducati outside the main entrance. I almost snapped a picture. :)
After a quick consultation with CR and a quick visit with BJ (hopefully BB, his wife, BJ and I will have dinner this evening) I made my way over to the outpatient clinic.
Not much more to report yet, but I did want to mention one humorous (sort of) thing. One of the young nurses in the myeloma clinic who used to give me grief about getting conscious sedation for the bone marrow biopsy got into the elevator with me. I asked how the storms that have ravaged the south these last few weeks had impacted Arkansas (there are been tornados, for example).
She said everybody was okay but their barn was damaged and her husband's work was disrupted. He is, I was told, a taxidermist.
I have a vision now of a man running from a small funnel cloud populated with the swirling carcasses of dead squirrels and possums....
More news when I get my labs and MRI results back later this week.
Wednesday, April 27, 2011
A quick thought on caregivers...
Without caregivers, it would be unthinkably challenging to those of us battling this disease.
Give your caregiver a hug today.
There you have it: my briefest and least clinical post, but it is as heartfelt as any I've made.
Give your caregiver a hug today.
There you have it: my briefest and least clinical post, but it is as heartfelt as any I've made.
Wednesday, April 20, 2011
A bit more on killer cells at UAMS...
For those interested, the trial in which BrB will be enrolled is described right here. If this works for high risk patients, it will likely work for all. Let's all keep our fingers crossed!
Another example of why I love my doctor
A fellow traveller -- well, actually, we're going to call this guy a warrior...BB are his initials, and he's not related to my marvelous doctor -- has been through hell, and today was a neat example of why I love BB (both of them, really, but the doctor for purposes of this story).
This is gonna get confusing so we'll call the patient BrB and the doctor BB.
You have read a lot in my blog about low-risk versus high-risk disease. About 85% of patients, according to the 70- and 80-gene studies at UAMS that are by far the most advanced in the world for this disease, are classified as low-risk disease and they are eligible for the TT4 protocol for low-risk disease. This is what I underwent. I had some bad characteristics within this 85%, such as cytogeneic abnormalities and a "proliferation" subtype that meant my disease was more aggressive than some, but I was still low risk. And BB believe he is curing about 65% of newly-diagnosed low-risk disease patients through the TT4 protocol.
The results and prognosis for high-risk candidates are considerably more dire. The treatment protocol is more aggressive even than the already-aggressive TT4 protocol (I believe there are five or six additional chemo agents used, on top of the four used in TT4 -- and note this excludes "pseudo" chemo like thalidomide, Velcade, etc. - I'm talking real, old-school mustard gas chemo). And cure / survival rates are much lower. Only about 20%, if memory serves, are cured, and most people live only 3-4 years with high risk disease.
My wife and I met BrB and his lovely wife as we were in the middle of therapy. They are delightful, warm people and it pains us to know all that BrB has had to go through. On top of it being high-risk, he is also non-secretory, which means his disease does not show up in his blood (M-spike) or his urine (Bence Jones Protein). It is only through PET Scans and bone marrow biopsies that it is revealed.
BrB enjoyed one year of remission after this brutal regimen, and about six months ago it came back. I'll spare the details, but he's been through extremely aggressive chemo, has had to deal with horrible respiratory complications, hospital stays for that where he's contracted opportunistic infections, etc. Throughout this, his lovely wife J has been so supportive and tried to keep his spirits up. BrB, understandably, has had some real challenges but he manages to soldier on with dignity even if his spirit and body is exhausted.
Several days ago, BB demanded to know where some test results were. They hadn't been done. BB went ballistic and the tests were done. And then he saw that there was some residual myeloma. BrB was saddened, obviously, until -- and this is where it gets cool almost like a scene in a movie, BB called the lab.
"How close are we with the killer cells?"
"One week."
"I want BrB to be the first to receive them."
In addition to the existing Total Therapy regiments, BB and his colleagues have been working on killer cells for myeloma. This has been done successfully in leukemia in London, and it has been demonstrated to be highly effective in myeloma-stricken mice at UAMS.
BrB will be put on Pomalidomide (next-gen Revlimid) to keep the myeloma in check until May, when he can get enrolled as the second (there's one other guy, turns out) patient in this trial that has shown tremendous promise.
My thoughts and prayers go out to BrB and J, both for their own individual sakes and as hopefully an example of another important breakthrough driven by BB's steadfast desire to cure this disease.
This is gonna get confusing so we'll call the patient BrB and the doctor BB.
You have read a lot in my blog about low-risk versus high-risk disease. About 85% of patients, according to the 70- and 80-gene studies at UAMS that are by far the most advanced in the world for this disease, are classified as low-risk disease and they are eligible for the TT4 protocol for low-risk disease. This is what I underwent. I had some bad characteristics within this 85%, such as cytogeneic abnormalities and a "proliferation" subtype that meant my disease was more aggressive than some, but I was still low risk. And BB believe he is curing about 65% of newly-diagnosed low-risk disease patients through the TT4 protocol.
The results and prognosis for high-risk candidates are considerably more dire. The treatment protocol is more aggressive even than the already-aggressive TT4 protocol (I believe there are five or six additional chemo agents used, on top of the four used in TT4 -- and note this excludes "pseudo" chemo like thalidomide, Velcade, etc. - I'm talking real, old-school mustard gas chemo). And cure / survival rates are much lower. Only about 20%, if memory serves, are cured, and most people live only 3-4 years with high risk disease.
My wife and I met BrB and his lovely wife as we were in the middle of therapy. They are delightful, warm people and it pains us to know all that BrB has had to go through. On top of it being high-risk, he is also non-secretory, which means his disease does not show up in his blood (M-spike) or his urine (Bence Jones Protein). It is only through PET Scans and bone marrow biopsies that it is revealed.
BrB enjoyed one year of remission after this brutal regimen, and about six months ago it came back. I'll spare the details, but he's been through extremely aggressive chemo, has had to deal with horrible respiratory complications, hospital stays for that where he's contracted opportunistic infections, etc. Throughout this, his lovely wife J has been so supportive and tried to keep his spirits up. BrB, understandably, has had some real challenges but he manages to soldier on with dignity even if his spirit and body is exhausted.
Several days ago, BB demanded to know where some test results were. They hadn't been done. BB went ballistic and the tests were done. And then he saw that there was some residual myeloma. BrB was saddened, obviously, until -- and this is where it gets cool almost like a scene in a movie, BB called the lab.
"How close are we with the killer cells?"
"One week."
"I want BrB to be the first to receive them."
In addition to the existing Total Therapy regiments, BB and his colleagues have been working on killer cells for myeloma. This has been done successfully in leukemia in London, and it has been demonstrated to be highly effective in myeloma-stricken mice at UAMS.
BrB will be put on Pomalidomide (next-gen Revlimid) to keep the myeloma in check until May, when he can get enrolled as the second (there's one other guy, turns out) patient in this trial that has shown tremendous promise.
My thoughts and prayers go out to BrB and J, both for their own individual sakes and as hopefully an example of another important breakthrough driven by BB's steadfast desire to cure this disease.
Monday, April 11, 2011
Bruising like a grape
Just a quick update about one of the side-effects of Revlimid. I banged my hip against my desk a couple of weeks ago and a GNARLY bruise resulted. I mean at its peak this thing was at least six inches in diameter and covered the whole right side of my hip. Yuck. I was going to take a picture of it and post it here but frankly, neither you nor I really want to see that immortalized for future search engines to find! :)
My platelets were around 110. I graphed this at one point for my own edification and should put it up here. On maintenance there is a short cycle where while one is on Revlimid for the 21 days, the platelets decrease, and during the week that one is off it, they creep back up. They might, for example, be at 150 at the start of the month, go down to 110 by the end of the 21 days, and go back up to 150 at the end of the 18 days.
Two further points, though. The first is that they lag a little bit so they seem to continue to go up during the first few days (say the first 7 of the 21) of the month and then continue to go down even when one is no longer taking the Revlimid for a few days.
The second, bigger point is that over time they don't go up by as much as they go down. I would say my baseline has probably dropped from 125 to maybe 110 over the last year. And that is slightly troubling since I'm on this stuff for another 18 months or so and I will be well below 100 on a regular basis, and that's when the gnarly bruising starts.
I asked BB if I could take a week off from the Revlimid to give the marrow a chance to recover and hopefully have that bruise vanish. He agreed, thankfully. So the bruise is starting to get better. But today is my last day off. Blech.
Be well, everyone! I am scheduled to return to Arkansas on the 16th of May but will have updates before then.
My platelets were around 110. I graphed this at one point for my own edification and should put it up here. On maintenance there is a short cycle where while one is on Revlimid for the 21 days, the platelets decrease, and during the week that one is off it, they creep back up. They might, for example, be at 150 at the start of the month, go down to 110 by the end of the 21 days, and go back up to 150 at the end of the 18 days.
Two further points, though. The first is that they lag a little bit so they seem to continue to go up during the first few days (say the first 7 of the 21) of the month and then continue to go down even when one is no longer taking the Revlimid for a few days.
The second, bigger point is that over time they don't go up by as much as they go down. I would say my baseline has probably dropped from 125 to maybe 110 over the last year. And that is slightly troubling since I'm on this stuff for another 18 months or so and I will be well below 100 on a regular basis, and that's when the gnarly bruising starts.
I asked BB if I could take a week off from the Revlimid to give the marrow a chance to recover and hopefully have that bruise vanish. He agreed, thankfully. So the bruise is starting to get better. But today is my last day off. Blech.
Be well, everyone! I am scheduled to return to Arkansas on the 16th of May but will have updates before then.
Saturday, March 26, 2011
Sad news about Geraldine Ferraro...
A sober reminder of how horrible this disease is. She was quite a fighter -- living with this for 12 years. She outlasted the odds available to her at that time. But it's also a sobering reminder of how one can only control this disease for so long.
Here's hoping that in celebrating her life and honoring her passing with dignity, some attention can be focused on this disease and new treatments developed, hopefully leading to a cure that's a bit less intensive than the one hopefully offered through tandem transplants.
For now, I remain humbled by my good fortune in finding a doctor and a protocol in whom and in which I believe, respectively. And I remain thankful for you good people, and for the favorable impact my therapy has had on me thus far.
Here's hoping that in celebrating her life and honoring her passing with dignity, some attention can be focused on this disease and new treatments developed, hopefully leading to a cure that's a bit less intensive than the one hopefully offered through tandem transplants.
For now, I remain humbled by my good fortune in finding a doctor and a protocol in whom and in which I believe, respectively. And I remain thankful for you good people, and for the favorable impact my therapy has had on me thus far.
Tuesday, March 15, 2011
Thought I'd let you know I'm not sick! :)
Sorry to have been so busy!!!
I have some interesting things to post...I have on average two people a week email me as newly diagnosed patients. And one lovely young lady who is working on a college paper on the disease after her mother was diagnosed was kind enough to ask me some interesting questions, and our dialogue might be insightful to some so I will post that soon.
Generally, everything is good. I went through a couple of weeks where the dex was bothering me...it wasn't even that I had (TMI alert) constipation...it was as though the entire digestive system shut down. I felt like I had food in my stomach for three days. It was pretty awful. But those have abated the last couple of weeks...in fact this week I have felt positively peachy -- no GI issues at all. I am off Revlimid for the week, and I decided to give myself a break from the magnesium, so it's been very easy.
Of course all that ends shortly, as today is Velcade day and then I've got the Revlimid back on tonight and the accompanying Dex. However, everything is steady as she goes.
Including the weight, sadly. I dropped about 20 pounds but have been holding fairly steady. Further weight dropping, given how much I am working, is going to require probably total abstinence from wine for a month and even more heinous restrictions on food. I really only want to lose another 10-15 pounds...that would put me back at my high school fighting weight which would be pretty remarkable after all I've been through. We shall see.
Anyhow, sorry for the lack of updates...I shall endeavor to be more regular soon!
I have some interesting things to post...I have on average two people a week email me as newly diagnosed patients. And one lovely young lady who is working on a college paper on the disease after her mother was diagnosed was kind enough to ask me some interesting questions, and our dialogue might be insightful to some so I will post that soon.
Generally, everything is good. I went through a couple of weeks where the dex was bothering me...it wasn't even that I had (TMI alert) constipation...it was as though the entire digestive system shut down. I felt like I had food in my stomach for three days. It was pretty awful. But those have abated the last couple of weeks...in fact this week I have felt positively peachy -- no GI issues at all. I am off Revlimid for the week, and I decided to give myself a break from the magnesium, so it's been very easy.
Of course all that ends shortly, as today is Velcade day and then I've got the Revlimid back on tonight and the accompanying Dex. However, everything is steady as she goes.
Including the weight, sadly. I dropped about 20 pounds but have been holding fairly steady. Further weight dropping, given how much I am working, is going to require probably total abstinence from wine for a month and even more heinous restrictions on food. I really only want to lose another 10-15 pounds...that would put me back at my high school fighting weight which would be pretty remarkable after all I've been through. We shall see.
Anyhow, sorry for the lack of updates...I shall endeavor to be more regular soon!
Thursday, January 27, 2011
Reflecting on lost friends, those still here, and those I continue to meet...
It's roughly two years to the day since I began treatment. I took my medicine this week, including Zometa (a pricey little thing at $3,400 per infusion!) to hopefully spur my bones into healing quicker and resolving those remaining inactive tumor sites. If they're all gone by the time of my next trip, with some luck I won't need to have a fine needle aspiration done on any of them!
And I deal with the side effects. All things being equal, of course I'd rather not be on this stuff. My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be. Between tiredness and the barrage of winter colds encouraged by my intentionally suppressed immune system, and of course my work schedule, it's hard to even think of when I might exercise but I really need to start physical therapy. Damn, I should have made that one of my new year's resolutions.
But I remain very fortunate. I'm thinking now of two groups of people...the first group is comprised, unfortunately, of a small but growing numbers of fellow Myeloma travelers I've met since my diagnosis. Some were quite sick at the time of my diagnosis, and some were not yet diagnosed. But several have given up the struggle and lost their battle with this horrible disease. These people are friends in a very real sense...and I feel the loss. Just today, I was looking through another blog and found that the woman that maintains it lost her husband literally yesterday after a single transplant a couple of years ago.
Then there's another group of friends who have chosen to control the disease, with minimal use of drugs and reserving stem cell transplant as a last resort, etc. For a time, these friends seemed to be faring well but one by one they are losing remission. I fear for them, not because they necessarily will have a dire end any time soon, but because it is a reminder of where the "control" path leads. To eventual recurrence and the hope that science outpaces the disease. And certainly there are more drugs now than ever before to help beat it down. I will of course be reliant upon the newest of these in the (unlikely) event my own disease returns.
Then there's yet another group...people that contact me through my blog. On average, I get perhaps two emails a week from newly diagnosed patients. It is one of the most rewarding things in my life when this happens...I feel like I am able to provide a little perspective, and some optimism. I started this blog, in part, because everything I read was so defeatist. I remember the book saying "your new birthday will be the date of your transplant, nothing will ever be the same, etc." Well I had two of them, and I can scarcely remember the month with confidence, much less the day. And while there is a "new normal" that has replaced the "old normal," I would say that most things are very much the same.
So this is rambling, but I guess I would say to my second two groups: don't be afraid to take the fight to the disease if it's acting up. Don't be afraid of a transplant if that's part of the protocol you and your doctor choose. Don't fret about the side effects: the side effect of untreated Myeloma is death. That's a bigger deal than hair loss! Or the other side effects -- which I humorously found mentioned on another blog as NVD (never thought of my initials being a mnemonic for nausea, vomiting and diarrhea). As I mentioned during my own transplant experience, they are very good at controlling the first two.
And while I strive not to be messianic in this blog, if you are newly diagnosed, PLEASE do yourself a favor and investigate aggressive therapy. People are being cured in large numbers. It bothers me so much when people refer to Myeloma is incurable. That's simply not true.
All that said, the aggressive path is not for everybody, but three things are:
* Find a Myeloma specialist. NOT just any old hematologist, not somebody who dabbles in it along with lymphoma and non-HL and leukemia. But somebody who REALLY knows this disease.
* Take control. Demand your labs. Ask questions. Learn everything you can about the disease. Be your own advocate.
* Bring a positive attitude. Once you have selected your treatment path, be confident in your choice. Put your trust in the hands of your doctor. Remember, any pill you take or infusion you receive that causes an unpleasant side effect is killing your cancer and upsetting it much more than the rest of you.
* Commit to getting better. Make this the most important thing in your life. If you have to move temporarily to be closer to a true center of excellence, do it. Your home will be there when you get back. If you worry about the expense, consider this is the fight of your life and if it's not worth burning through savings on this, what is it there for? If you worry about vanity like hair loss, get over it and get better. Nobody chooses this path: you are dealt a crummy hand. You can either play it to win, or fold. Play it to win.
And I deal with the side effects. All things being equal, of course I'd rather not be on this stuff. My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be. Between tiredness and the barrage of winter colds encouraged by my intentionally suppressed immune system, and of course my work schedule, it's hard to even think of when I might exercise but I really need to start physical therapy. Damn, I should have made that one of my new year's resolutions.
But I remain very fortunate. I'm thinking now of two groups of people...the first group is comprised, unfortunately, of a small but growing numbers of fellow Myeloma travelers I've met since my diagnosis. Some were quite sick at the time of my diagnosis, and some were not yet diagnosed. But several have given up the struggle and lost their battle with this horrible disease. These people are friends in a very real sense...and I feel the loss. Just today, I was looking through another blog and found that the woman that maintains it lost her husband literally yesterday after a single transplant a couple of years ago.
Then there's another group of friends who have chosen to control the disease, with minimal use of drugs and reserving stem cell transplant as a last resort, etc. For a time, these friends seemed to be faring well but one by one they are losing remission. I fear for them, not because they necessarily will have a dire end any time soon, but because it is a reminder of where the "control" path leads. To eventual recurrence and the hope that science outpaces the disease. And certainly there are more drugs now than ever before to help beat it down. I will of course be reliant upon the newest of these in the (unlikely) event my own disease returns.
Then there's yet another group...people that contact me through my blog. On average, I get perhaps two emails a week from newly diagnosed patients. It is one of the most rewarding things in my life when this happens...I feel like I am able to provide a little perspective, and some optimism. I started this blog, in part, because everything I read was so defeatist. I remember the book saying "your new birthday will be the date of your transplant, nothing will ever be the same, etc." Well I had two of them, and I can scarcely remember the month with confidence, much less the day. And while there is a "new normal" that has replaced the "old normal," I would say that most things are very much the same.
So this is rambling, but I guess I would say to my second two groups: don't be afraid to take the fight to the disease if it's acting up. Don't be afraid of a transplant if that's part of the protocol you and your doctor choose. Don't fret about the side effects: the side effect of untreated Myeloma is death. That's a bigger deal than hair loss! Or the other side effects -- which I humorously found mentioned on another blog as NVD (never thought of my initials being a mnemonic for nausea, vomiting and diarrhea). As I mentioned during my own transplant experience, they are very good at controlling the first two.
And while I strive not to be messianic in this blog, if you are newly diagnosed, PLEASE do yourself a favor and investigate aggressive therapy. People are being cured in large numbers. It bothers me so much when people refer to Myeloma is incurable. That's simply not true.
All that said, the aggressive path is not for everybody, but three things are:
* Find a Myeloma specialist. NOT just any old hematologist, not somebody who dabbles in it along with lymphoma and non-HL and leukemia. But somebody who REALLY knows this disease.
* Take control. Demand your labs. Ask questions. Learn everything you can about the disease. Be your own advocate.
* Bring a positive attitude. Once you have selected your treatment path, be confident in your choice. Put your trust in the hands of your doctor. Remember, any pill you take or infusion you receive that causes an unpleasant side effect is killing your cancer and upsetting it much more than the rest of you.
* Commit to getting better. Make this the most important thing in your life. If you have to move temporarily to be closer to a true center of excellence, do it. Your home will be there when you get back. If you worry about the expense, consider this is the fight of your life and if it's not worth burning through savings on this, what is it there for? If you worry about vanity like hair loss, get over it and get better. Nobody chooses this path: you are dealt a crummy hand. You can either play it to win, or fold. Play it to win.
Subscribe to:
Posts (Atom)
