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.
Monday, April 11, 2011
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.
Friday, January 14, 2011
Normal marrow and other thoughts, including BBs opinion on the Revlimid scare
First off, everything looks good. Marrow has 50 percent cellularity, 5 plasma cells, 2 percent core plasma cells and is negative for Myeloma. Also, my hip doesn't hurt all that much so the new bone marrower must have done a good job!
I got to the clinic early today. I had a 12:45 appointment with BB and, keeping in mind that last time I got to the clinic early and got seen pretty quickly, attempted the same. I got there at 10:30 or so. Sure enough, I met with the research nurse pretty quickly. Hard to believe I am heading into my 17th month of maintenance already.
Then things slowed down. Waited in the clinic for about an hour, then got put in a room. I read my labs...the MRI, unfortunately, did not indicate any shrinking of the four remaining focal lesions. They were stable, but did not resolve. My blood work came back negative for M protein under SPEP, but there was not yet a result from Immunofixation which is the more sensitive measure.
I observed on the MRI various characterizations -- hypointensive marrow, hyperintensive marrow, isointensive marrow, homogenous marrow, heterogenous marrow, etc. I tried to discern any differences between the previous scan and this one but I lacked the knowledge to figure it out.
I sat and waited, and waited, and waited. I had a flight to catch and wanted to leave by 3PM and it was starting to look dicey. At around 1:45 the clinician, a terrific physician's assistant named JA, arrived. He called and got the bone marrow results, which was a relief. He explained that what we are looking for is homogenous marrow, as opposed to heterogeneous marrow, as the latter implies patchiness. So in this context these descriptors do not refer to the cellular content of the marrow but rather the evenness of its distribution through the body.
The other vector -- hypo- hyper- or iso-intensivity -- is a little more complicated. MRIs (at least the ones done here) use two types of images: T1-weighted and STIR. I have no idea what these distinctions mean, but JA explained that T1-weighted images focus on the liquid in one's body which makes the readings of marrow hyper intensive. So the ones to look at are the STIR images, and the best reading is evidently isointensive (which means the same all over).
For what it's worth, I am mildly hyperintensive. Sadly I learned what all this meant after I turned the file over to JA but next time I will see what I used to be and how it has changed. All of this is subjective and up to the tech that interprets the MRI, so one's mileage may vary. I was told by JA that BB would not react to any of that data, although he reminded me that "sometimes BB sees things in the data that the rest of us do not see."
It was now 2:15 and I reiterated that I had to get on a plane at some point soon...my original appointment time with BB was 12:45. JA said that BB was almost back on schedule and I should be able to get out of there by 3PM, which would be perfect.
Then I sat down with the man himself. He looked troubled (though not by me). He got on the phone with the hospital, got some people on the line and was quite upset. From what I gathered, one of the APN (uber nurses) in the Myeloma clinic had developed Waldenström's macroglobulinemia, which is itself a blood cancer. BB had done rounds yesterday and noticed that this person's white cells were at zero. He ordered a bone marrow and asked that stem cells be readied. When BB saw the results of the bone marrow he ordered the stem cell transplant immediately.
Apparently the doctor at the hospital who had to sign off on this cited protocol that the two things (bone marrow biopsy and stem cell transplant) cannot be done on the same day because it can create a chaotic environment in which patients can be at risk. BB's point of view is that this isn't done every day, and that if exceptions cannot be made when a person's life is at risk, there is something seriously wrong with the policy.
BB laid it on the line: if this young man dies because of this, he is gonna give it to everybody over there with both barrels and hold them responsible.
I mention this because BB becomes personally invested in the patients under his care. I have written about this before. Every patient lost to Myeloma is an affront to him. He confided that this has been a "horrible year" so far and that half a dozen high risk patients have been lost. "you follow these people and treat them for so long, and then to lose them...you know..." I could see how it affected him. He said that "it's as though there is nothing in common between the two branches" -- meaning he really does think that most low risk patients will be cured.
While waiting for him, I spoke at length with a gentleman who looked to be in his late 50s who was himself high risk but was still in remission three years after he began. High risk patients achieve remission easily but the recurrence rates are frightfully high for the first three years. After that, they flatten out and recurrence risk is very low -- in fact they are likely cured. The gentleman with whom is spoke is three years out. When he last saw BB, the doctor said "you are almost out of the woods...but not quite!" and winked at him. Hopefully this guy -- who looked great, it must be said -- is out of the woods now with this current visit.
That man and I spoke, as it happens, about BBs humanity. He has an edgy sense of humor and is an iconoclast and is the same guy who jokingly pulled a clump of hair out of my head and pointed out how fat I was last time I saw him. Yet his care for his patients is immense. The high risk gentleman told me of how he thought his major courses of chemo were finished during his primary therapy (like me, he is on maintenance) and he was saddened to learn at the time that there had been one more course. Evidently he had been misinformed, and BB was angry. He got on the phone with whomever was responsible and said "dammit these patients go through hell, you cannot pull the rug out from under them with this."
Back to the present. BB was happy with everything in my chart except for the presence of the focal lesions that we want to see resolve (I have four or five left...two in my spine, one in my right hip, and one in one of my shoulders, possibly one in my rib). These are no longer FDG-avid -- meaning there is no cancer -- but as long as they are there, there is a chance that they can form a microenvironment for recurrence of the cancer (such is BB's theory, at least). "Sometimes, these ghosts can linger...it could take years in some people before they go away. But we want them gone."
I suggested Zometa and he agreed, so i will get one course every month for the next four months. He said he was "considering doing a fine needle aspirate of the lesions" but that the last time that was done, they were negative for Myeloma so he was not yet ordering it, and i will not need a PET scan next time either. I cannot say I am happy about the prospect of the FNA but I will cross that bridge when I come to it.
He offered me the ability to come back in six months rather than four, but i want to see these gone, and I want to hang out with BB, frankly, which we were not able to do this time. He asked about my family and told me to email him directly next time so that we can arrange dinner.
Then he said "you know, I saw a newspaper article about my good friend RS, who used to work with us here and now operates out of Hackensack...and this pisses me off.". He showed me the article, which was about Dr. RS's enthusiastic support of Carfilzomib, the next generation protease inhibitor which works in many cases where Velcade no longer does. The offending line in the article (which were not RS's words) referred to Myeloma being a disease which is "uniformly fatal.". BB said "why do they say that?"
I said that it upset me every time I read something similar, whether in an article like that or a fundraising letter from the MMRF (long-term readers know that I hold this organization in immense esteem, its refusal to acknowledge UAMS' results notwithstanding). I said I felt it was a slap in the face to the work being done at UAMS and to patients who have undergone treatment and been cured. We mused that it was in part a desire to maintain urgency behind fund raising and new drug development, but BB said "when you are curing childhood leukemia, you can raise money by pointing out the tremendous advances being made.". That is true, although I do think maintaining urgency behind a disease that cannot be definitively cured in virtually 100 percent of patients is pretty important.
I then asked BB about the Revlimid scare. Unlike GD, when I asked this of BB he knew immediately what I was talking about and I didn't even need to finish the sentence. His response, verbatim to reflect both his personality and his passion: "that's total bullish*t. Absolute bullish*t. We have seen hundreds of patients for many years and it's never happened. Somebody is selling something or has another agenda."
So there you have it.
Our time up, BB stood up and embraced me for a good 20 seconds and kissed me on the cheek, telling me again to give my family his best.
I cannot wait to see him again. I love that man.
Notably, I am on a flight to Las Vegas and the makeup of the passengers looks like a church group. Not sure the point of a church group going to Vegas...
I got to the clinic early today. I had a 12:45 appointment with BB and, keeping in mind that last time I got to the clinic early and got seen pretty quickly, attempted the same. I got there at 10:30 or so. Sure enough, I met with the research nurse pretty quickly. Hard to believe I am heading into my 17th month of maintenance already.
Then things slowed down. Waited in the clinic for about an hour, then got put in a room. I read my labs...the MRI, unfortunately, did not indicate any shrinking of the four remaining focal lesions. They were stable, but did not resolve. My blood work came back negative for M protein under SPEP, but there was not yet a result from Immunofixation which is the more sensitive measure.
I observed on the MRI various characterizations -- hypointensive marrow, hyperintensive marrow, isointensive marrow, homogenous marrow, heterogenous marrow, etc. I tried to discern any differences between the previous scan and this one but I lacked the knowledge to figure it out.
I sat and waited, and waited, and waited. I had a flight to catch and wanted to leave by 3PM and it was starting to look dicey. At around 1:45 the clinician, a terrific physician's assistant named JA, arrived. He called and got the bone marrow results, which was a relief. He explained that what we are looking for is homogenous marrow, as opposed to heterogeneous marrow, as the latter implies patchiness. So in this context these descriptors do not refer to the cellular content of the marrow but rather the evenness of its distribution through the body.
The other vector -- hypo- hyper- or iso-intensivity -- is a little more complicated. MRIs (at least the ones done here) use two types of images: T1-weighted and STIR. I have no idea what these distinctions mean, but JA explained that T1-weighted images focus on the liquid in one's body which makes the readings of marrow hyper intensive. So the ones to look at are the STIR images, and the best reading is evidently isointensive (which means the same all over).
For what it's worth, I am mildly hyperintensive. Sadly I learned what all this meant after I turned the file over to JA but next time I will see what I used to be and how it has changed. All of this is subjective and up to the tech that interprets the MRI, so one's mileage may vary. I was told by JA that BB would not react to any of that data, although he reminded me that "sometimes BB sees things in the data that the rest of us do not see."
It was now 2:15 and I reiterated that I had to get on a plane at some point soon...my original appointment time with BB was 12:45. JA said that BB was almost back on schedule and I should be able to get out of there by 3PM, which would be perfect.
Then I sat down with the man himself. He looked troubled (though not by me). He got on the phone with the hospital, got some people on the line and was quite upset. From what I gathered, one of the APN (uber nurses) in the Myeloma clinic had developed Waldenström's macroglobulinemia, which is itself a blood cancer. BB had done rounds yesterday and noticed that this person's white cells were at zero. He ordered a bone marrow and asked that stem cells be readied. When BB saw the results of the bone marrow he ordered the stem cell transplant immediately.
Apparently the doctor at the hospital who had to sign off on this cited protocol that the two things (bone marrow biopsy and stem cell transplant) cannot be done on the same day because it can create a chaotic environment in which patients can be at risk. BB's point of view is that this isn't done every day, and that if exceptions cannot be made when a person's life is at risk, there is something seriously wrong with the policy.
BB laid it on the line: if this young man dies because of this, he is gonna give it to everybody over there with both barrels and hold them responsible.
I mention this because BB becomes personally invested in the patients under his care. I have written about this before. Every patient lost to Myeloma is an affront to him. He confided that this has been a "horrible year" so far and that half a dozen high risk patients have been lost. "you follow these people and treat them for so long, and then to lose them...you know..." I could see how it affected him. He said that "it's as though there is nothing in common between the two branches" -- meaning he really does think that most low risk patients will be cured.
While waiting for him, I spoke at length with a gentleman who looked to be in his late 50s who was himself high risk but was still in remission three years after he began. High risk patients achieve remission easily but the recurrence rates are frightfully high for the first three years. After that, they flatten out and recurrence risk is very low -- in fact they are likely cured. The gentleman with whom is spoke is three years out. When he last saw BB, the doctor said "you are almost out of the woods...but not quite!" and winked at him. Hopefully this guy -- who looked great, it must be said -- is out of the woods now with this current visit.
That man and I spoke, as it happens, about BBs humanity. He has an edgy sense of humor and is an iconoclast and is the same guy who jokingly pulled a clump of hair out of my head and pointed out how fat I was last time I saw him. Yet his care for his patients is immense. The high risk gentleman told me of how he thought his major courses of chemo were finished during his primary therapy (like me, he is on maintenance) and he was saddened to learn at the time that there had been one more course. Evidently he had been misinformed, and BB was angry. He got on the phone with whomever was responsible and said "dammit these patients go through hell, you cannot pull the rug out from under them with this."
Back to the present. BB was happy with everything in my chart except for the presence of the focal lesions that we want to see resolve (I have four or five left...two in my spine, one in my right hip, and one in one of my shoulders, possibly one in my rib). These are no longer FDG-avid -- meaning there is no cancer -- but as long as they are there, there is a chance that they can form a microenvironment for recurrence of the cancer (such is BB's theory, at least). "Sometimes, these ghosts can linger...it could take years in some people before they go away. But we want them gone."
I suggested Zometa and he agreed, so i will get one course every month for the next four months. He said he was "considering doing a fine needle aspirate of the lesions" but that the last time that was done, they were negative for Myeloma so he was not yet ordering it, and i will not need a PET scan next time either. I cannot say I am happy about the prospect of the FNA but I will cross that bridge when I come to it.
He offered me the ability to come back in six months rather than four, but i want to see these gone, and I want to hang out with BB, frankly, which we were not able to do this time. He asked about my family and told me to email him directly next time so that we can arrange dinner.
Then he said "you know, I saw a newspaper article about my good friend RS, who used to work with us here and now operates out of Hackensack...and this pisses me off.". He showed me the article, which was about Dr. RS's enthusiastic support of Carfilzomib, the next generation protease inhibitor which works in many cases where Velcade no longer does. The offending line in the article (which were not RS's words) referred to Myeloma being a disease which is "uniformly fatal.". BB said "why do they say that?"
I said that it upset me every time I read something similar, whether in an article like that or a fundraising letter from the MMRF (long-term readers know that I hold this organization in immense esteem, its refusal to acknowledge UAMS' results notwithstanding). I said I felt it was a slap in the face to the work being done at UAMS and to patients who have undergone treatment and been cured. We mused that it was in part a desire to maintain urgency behind fund raising and new drug development, but BB said "when you are curing childhood leukemia, you can raise money by pointing out the tremendous advances being made.". That is true, although I do think maintaining urgency behind a disease that cannot be definitively cured in virtually 100 percent of patients is pretty important.
I then asked BB about the Revlimid scare. Unlike GD, when I asked this of BB he knew immediately what I was talking about and I didn't even need to finish the sentence. His response, verbatim to reflect both his personality and his passion: "that's total bullish*t. Absolute bullish*t. We have seen hundreds of patients for many years and it's never happened. Somebody is selling something or has another agenda."
So there you have it.
Our time up, BB stood up and embraced me for a good 20 seconds and kissed me on the cheek, telling me again to give my family his best.
I cannot wait to see him again. I love that man.
Notably, I am on a flight to Las Vegas and the makeup of the passengers looks like a church group. Not sure the point of a church group going to Vegas...
Thursday, January 13, 2011
Two things to be nervous about...
I am typing this from a stretcher about to be rolled in for the bone marrow.
You gotta love how good Arkansas is about getting patients their data. I looked at the PET scan results. Largest lesion remains in my right hip at 3.5 cm. I seem to recall that is unchanged from last time, which is disappointing. Plus the SUV for my L5 vertebrae went from 1.3 to 1.6. Hopefully this is just noise and neither figure is indicative of cancer but I like numbers to go down, not up.
Second nerves-inducing moment was overhearing the bone marrow nurses. I am to be the first attempt by one of them. Things like "if you do that, then you will just need to make another hole."
Let's not do that, okay?
And while you are at it, keep your voices down or have these conversations out of earshot!
You gotta love how good Arkansas is about getting patients their data. I looked at the PET scan results. Largest lesion remains in my right hip at 3.5 cm. I seem to recall that is unchanged from last time, which is disappointing. Plus the SUV for my L5 vertebrae went from 1.3 to 1.6. Hopefully this is just noise and neither figure is indicative of cancer but I like numbers to go down, not up.
Second nerves-inducing moment was overhearing the bone marrow nurses. I am to be the first attempt by one of them. Things like "if you do that, then you will just need to make another hole."
Let's not do that, okay?
And while you are at it, keep your voices down or have these conversations out of earshot!
Arkansas update, or BOOP BLEEP BZZZZ BLAM BLAM BLAM
Those onomatopoeias there reflect but a few seconds worth of the aural cacaphony of an MRI.
I had about two hours worth of that plus a host of other loud noises yesterday afternoon. Only here, ground zero for aggressive testing, could they find a way to make an MRI more exhaustive (and exhausting). I may have written last time about the relatively new (I think) DWIBS scan which essentially a second full body MRI focusing specifically on bone marrow. So now, one has basically TWO full body MRIs to deal with.
I also had my tenth or eleventh PET scan yesterday. I found out that I can listen to my iPod during the roughly fifty minute scan. File that under "things I wish I had learned nine or ten scans ago."
I will get the results of these scans tomorrow when I meet with BB, whom I saw at dinner last night. He was having a dinner with his right arm, BJ, and the head of an imaging company. I am sure BB and his patients are some of the best customers. I believe there are six MRIs at UAMS, with zero downtime, running 12 plus hours a day, and 80 percent of the entire volume is for Myeloma. Amazing!
Yesterday began with port access and blood draw. I was unsuccessful in my efforts to get them to use the port for the blood. The clotting factor (important to confirm before a bone marrow biopsy can be done) is rendered inaccurate by the heparin used in the line after each access to ensure it doesn't clog. So they found a vein in the thick part of my right forearm, about three inches towards the hand, versus the inner fold of the arm at the elbow where people with healthy veins are usually tapped.
I asked the nurse about the likelihood of my veins returning to health. It does not sound promising, sadly. C'est la vie. Difficult-to-find veins scarred by chemotherapy are not going to kill me, and I have long since learned to accept that the "new normal" is a life replete with little inconveniences.
(a real-time note: the delightful doctor with whom I just checked in to make sure I could tolerate the anesthesia for the biopsy just asked if i was related to Dick van Dyke...but was astut enough to note that this was probably not the first time I had been asked).
Anyhow, while I was not successful in getting them to use the port for the blood draw, I was able to have them access it for the tracer used in the PET scan, and I will use it for the sedation today, so that saves a couple of IVs. I also refused the use of contrast for my MRI. They use it sometimes to make the brain easier to interpret and I have had it before. But there was never any myeloma involvement in my brain (thus, my questionable brain function must have another source) so I don't feel compelled to do this often, particularly since I am in remission (knock on wood that it hasn't been lost) and since I heard a rumor on another blog (albeit one that advocates curcumin rather than treatment) that the tracer is bad for you.
Which brings me to this morning. Checking into the hosipital for the first of two pre-op consults, in the waiting room I was treated to the thrill-a-minute joyride that is closed circuit television coverage of the swearing in of the eight recruits comprising the new additions to the Little Rock police force. I was just about to listen to the moving convocation delivered by either the city sub-comptroller or dogcatcher (it was difficult to discern) when I was called in.
I did see a more thorough blood analysis from yesterday's pull (more labs were finished) and the numbers look good, though still no M-protein numbers. But B2M was a mere 1.4, the lowest it has ever been. Protein is 5.9. The graph looked good as well. My liver numbers are essentially all in range (AST's range is essentially 15-50 and I am at 52) so the amount of water I am drinking must be helping combat the effects of Lipitor, chemo, and wine.
More news at it becomes available.
Nb it is FREEZING here. Literally. 23 degrees as I drove in this morning!
I had about two hours worth of that plus a host of other loud noises yesterday afternoon. Only here, ground zero for aggressive testing, could they find a way to make an MRI more exhaustive (and exhausting). I may have written last time about the relatively new (I think) DWIBS scan which essentially a second full body MRI focusing specifically on bone marrow. So now, one has basically TWO full body MRIs to deal with.
I also had my tenth or eleventh PET scan yesterday. I found out that I can listen to my iPod during the roughly fifty minute scan. File that under "things I wish I had learned nine or ten scans ago."
I will get the results of these scans tomorrow when I meet with BB, whom I saw at dinner last night. He was having a dinner with his right arm, BJ, and the head of an imaging company. I am sure BB and his patients are some of the best customers. I believe there are six MRIs at UAMS, with zero downtime, running 12 plus hours a day, and 80 percent of the entire volume is for Myeloma. Amazing!
Yesterday began with port access and blood draw. I was unsuccessful in my efforts to get them to use the port for the blood. The clotting factor (important to confirm before a bone marrow biopsy can be done) is rendered inaccurate by the heparin used in the line after each access to ensure it doesn't clog. So they found a vein in the thick part of my right forearm, about three inches towards the hand, versus the inner fold of the arm at the elbow where people with healthy veins are usually tapped.
I asked the nurse about the likelihood of my veins returning to health. It does not sound promising, sadly. C'est la vie. Difficult-to-find veins scarred by chemotherapy are not going to kill me, and I have long since learned to accept that the "new normal" is a life replete with little inconveniences.
(a real-time note: the delightful doctor with whom I just checked in to make sure I could tolerate the anesthesia for the biopsy just asked if i was related to Dick van Dyke...but was astut enough to note that this was probably not the first time I had been asked).
Anyhow, while I was not successful in getting them to use the port for the blood draw, I was able to have them access it for the tracer used in the PET scan, and I will use it for the sedation today, so that saves a couple of IVs. I also refused the use of contrast for my MRI. They use it sometimes to make the brain easier to interpret and I have had it before. But there was never any myeloma involvement in my brain (thus, my questionable brain function must have another source) so I don't feel compelled to do this often, particularly since I am in remission (knock on wood that it hasn't been lost) and since I heard a rumor on another blog (albeit one that advocates curcumin rather than treatment) that the tracer is bad for you.
Which brings me to this morning. Checking into the hosipital for the first of two pre-op consults, in the waiting room I was treated to the thrill-a-minute joyride that is closed circuit television coverage of the swearing in of the eight recruits comprising the new additions to the Little Rock police force. I was just about to listen to the moving convocation delivered by either the city sub-comptroller or dogcatcher (it was difficult to discern) when I was called in.
I did see a more thorough blood analysis from yesterday's pull (more labs were finished) and the numbers look good, though still no M-protein numbers. But B2M was a mere 1.4, the lowest it has ever been. Protein is 5.9. The graph looked good as well. My liver numbers are essentially all in range (AST's range is essentially 15-50 and I am at 52) so the amount of water I am drinking must be helping combat the effects of Lipitor, chemo, and wine.
More news at it becomes available.
Nb it is FREEZING here. Literally. 23 degrees as I drove in this morning!
Tuesday, December 28, 2010
Some thoughts on this Revlimid situation...perhaps a false alarm?
Hello folks, and happy holidays.
There's been a bit of chatter over the last couple of weeks about Revlimid and its potential linkage to secondary cancer. This began when some studies of Revlimid in Myeloma seemed to have higher numbers of people with secondary cancers in the Revlimid arms than the non-Revlimid arms.
I've not yet gone back to Arkansas to look at the specific data, but I have had a couple of conversations subsequent to my last post so I thought I would mention it.
First, I think there is a figure of 8% being bandied about and I think it's being done incorrectly. The Celgene (maker of Revlimid) spokeperson said that there is an 8% chance that a Myeloma patient -- in general -- would develop a secondary cancer within a given two year period. Now this, alone, seems extremely high to me. But that's a separate issue. The same spokeperson than said that the number of additional secondary cancer occurrences in the Revlimid group was within this 8% margin for error -- in other words, s/he attributed it to random chance rather than any statistically significant impact from Revlimid (or at least made the case that it could simply be random).
I'm not sure how I feel about all that -- a mixed bag, at best, but I don't think the idea that Revlimid increases secondary cancers by 8% is correct.
Probably more importantly, I had a couple of conversations about this with Dr. GD (my maintenance guy) and one of his excellent nurses (who I'll explain in a moment). I was talking with GD in general about recent trials and I brought up the Revlimid one. He said that he'd had many people on Revlimid for many years and had never seen a single case of secondary cancer. That, it seems to me, is very good news. Anecdotal rather than statistically significant, perhaps, but good news nonetheless.
I mentioned the tandem transplant statistics and GD, despite his mild reservations about some of BB's aggressive tactics, said he believes they do in fact make a difference, do cure some people, and represent a "stop gap" measure until such time as we have a more effective means of managing Myeloma. Sounds right to me. He mentioned that he had a couple of patients whom he urged to go to Arkansas for treatment, and they opted for less invasive treatment, and they are both very ill now...as in on their last legs. Again, anecdotal and everybody's case is different, but it is worth noting.
GD also brought up that with one of these patients, he spoke with BB about how BB would treat. BB mentioned VDT-PACE as induction (Velcade, Dex, Thalidomide, Cisplatin, Adriamycin, Cyclophosphomide and Etoposide...all of which I had). GD said that the key to administering that therapy is a great deal of experience with managing side effects and palliative care, and that he (GD) would not be comfortable administering it himself. Makes sense. I had the same feeling when I reluctantly went to Arkansas -- I'd rather be the 1000th person going through it there than the first person doing it in California under somebody else.
I went back to GD's the following week and had a nurse I'd not met administer my Velcade. The other nurses are pleasant enough and good at their jobs, but I feel like I know much more about Myeloma than they do. However this nurse was extremely knowledgable. I mentioned Arkansas and she brought up BB. We discussed Total Therapy, etc. I was surprised at how much she knew, when one of the other nurses came in and said "oh, you've met E...did you know her husband is Dr. RV?" (RV, whom I've not mentioned here some time, is a prominent Myeloma specialist out in LA). Anyhow, this led to a discussion of Revlimid. RV has had, per his wife, "prescribes a LOT of Revlimid" and has never had any issues with secondary cancers.
More good news!
Speaking of which, all my labs look good. I get a week off meds next week -- cannot wait -- in preparation for my trip to Arkansas the following week for MRI, PET, bone marrow, and all that good stuff. Can't say I am looking forward to the process but I am eager to see results, hopefully, in resolution of the four remaining formerly-active lesions in my bones. If they are all healed up, BB will hopefully breathe a little easier with me. That's the next hurdle in the road to being cured.
Happy New Year to you all!
There's been a bit of chatter over the last couple of weeks about Revlimid and its potential linkage to secondary cancer. This began when some studies of Revlimid in Myeloma seemed to have higher numbers of people with secondary cancers in the Revlimid arms than the non-Revlimid arms.
I've not yet gone back to Arkansas to look at the specific data, but I have had a couple of conversations subsequent to my last post so I thought I would mention it.
First, I think there is a figure of 8% being bandied about and I think it's being done incorrectly. The Celgene (maker of Revlimid) spokeperson said that there is an 8% chance that a Myeloma patient -- in general -- would develop a secondary cancer within a given two year period. Now this, alone, seems extremely high to me. But that's a separate issue. The same spokeperson than said that the number of additional secondary cancer occurrences in the Revlimid group was within this 8% margin for error -- in other words, s/he attributed it to random chance rather than any statistically significant impact from Revlimid (or at least made the case that it could simply be random).
I'm not sure how I feel about all that -- a mixed bag, at best, but I don't think the idea that Revlimid increases secondary cancers by 8% is correct.
Probably more importantly, I had a couple of conversations about this with Dr. GD (my maintenance guy) and one of his excellent nurses (who I'll explain in a moment). I was talking with GD in general about recent trials and I brought up the Revlimid one. He said that he'd had many people on Revlimid for many years and had never seen a single case of secondary cancer. That, it seems to me, is very good news. Anecdotal rather than statistically significant, perhaps, but good news nonetheless.
I mentioned the tandem transplant statistics and GD, despite his mild reservations about some of BB's aggressive tactics, said he believes they do in fact make a difference, do cure some people, and represent a "stop gap" measure until such time as we have a more effective means of managing Myeloma. Sounds right to me. He mentioned that he had a couple of patients whom he urged to go to Arkansas for treatment, and they opted for less invasive treatment, and they are both very ill now...as in on their last legs. Again, anecdotal and everybody's case is different, but it is worth noting.
GD also brought up that with one of these patients, he spoke with BB about how BB would treat. BB mentioned VDT-PACE as induction (Velcade, Dex, Thalidomide, Cisplatin, Adriamycin, Cyclophosphomide and Etoposide...all of which I had). GD said that the key to administering that therapy is a great deal of experience with managing side effects and palliative care, and that he (GD) would not be comfortable administering it himself. Makes sense. I had the same feeling when I reluctantly went to Arkansas -- I'd rather be the 1000th person going through it there than the first person doing it in California under somebody else.
I went back to GD's the following week and had a nurse I'd not met administer my Velcade. The other nurses are pleasant enough and good at their jobs, but I feel like I know much more about Myeloma than they do. However this nurse was extremely knowledgable. I mentioned Arkansas and she brought up BB. We discussed Total Therapy, etc. I was surprised at how much she knew, when one of the other nurses came in and said "oh, you've met E...did you know her husband is Dr. RV?" (RV, whom I've not mentioned here some time, is a prominent Myeloma specialist out in LA). Anyhow, this led to a discussion of Revlimid. RV has had, per his wife, "prescribes a LOT of Revlimid" and has never had any issues with secondary cancers.
More good news!
Speaking of which, all my labs look good. I get a week off meds next week -- cannot wait -- in preparation for my trip to Arkansas the following week for MRI, PET, bone marrow, and all that good stuff. Can't say I am looking forward to the process but I am eager to see results, hopefully, in resolution of the four remaining formerly-active lesions in my bones. If they are all healed up, BB will hopefully breathe a little easier with me. That's the next hurdle in the road to being cured.
Happy New Year to you all!
Sunday, December 12, 2010
Asymptotes and secondary cancer...
It's been a pretty busy couple of weeks here. At my office I have three half-written posts that never got finished!
The first of these has to do with tying the previous post (about the efficacy of tandem transplants) more concretely to what Arkansas is doing. The study that demonstrated this was not a UAMS study. And it was done without the benefit of any new drugs -- BB uses tandem transplants plus the most potent induction protocol there is, plus Velcade and Revlimid. The efficacy of Total Therapy, therefore, is probably higher than the data would suggest.
But the real takeaway from that data is the notion of a plateau. UAMS' philosophy is predicated on the idea that if somebody has not lost remission by year X, they are cured. This was seen in a type of childhood leukemia as that disease was treated in a manner similar to Total Therapy, and that disease is now 95% curable.
People pooh-pooh the notion of a plateau in Myeloma, but I've never seen anybody explain why. This includes my maintenance doctor who seemingly doesn't understand the statistical notion of an asymptote (this explains why I never finished the other post...I wanted to bring some graphs into this and perhaps in a post to come I shall). At the highest level, an asymptote in this context means that instead of the chance of recurrence being equal or random over time, it grows smaller as remission is sustained and eventually disappears. In the study below (from memory) this was noted at 11 years. Which is about where UAMS noted it at the time of Total Therapy 1 (pre Velcade and Revlimid and Thalidomide). UAMS is now in Total Therapy 4 and 5 for newly diagnosed low- and high-risk patients, respectively, and the plateau for low-risk appears to be at three years post-complete remission. That means that if one makes it three years, one can go off meds and know that they are very likely cured (95% or more likelihood).
This brings me to the other issue in this post. Revlimid. Now key to any treatment of the disease, and an integral part of maintenance therapy for me and others treated at UAMS and elsewhere. Last week, Celgene (makers of Revlimid) took a pounding in the stock market when data suggested that their drug causes secondary cancers, such as Acute Myelogenous Leukemia.
This, needless to say, is jarring.
The exact statistics are a little vague at this point and no dosing information is available, and whatever secondary cancers show up are probably not as bad as contending with the mortality rate from untreated Myeloma. But I still don't like it. Particularly because (although there is no specific data that I could find) it is suggested that the occurrence of secondary cancer increases significantly when one has a stem cell transplant.
The best longitudinal (i.e. over time) data on the use of Revlimid, of course, comes from UAMS where BB has been using it for around seven years. That is actually three years longer than the study that was completed that indicated the secondary cancer.
So I emailed UAMS to ask them to share their own statistics with me. They will have tracked hundreds of people under their protocol and they'll know how many, if any, have contracted secondary cancer.
I've not heard back yet...which means I may go directly to BB himself.
I'll be there next month anyway, so I will find the answer.
In the meantime...I look a little more askance at each blue-and-white pill that I take in the evenings. It's a little disturbing...
The first of these has to do with tying the previous post (about the efficacy of tandem transplants) more concretely to what Arkansas is doing. The study that demonstrated this was not a UAMS study. And it was done without the benefit of any new drugs -- BB uses tandem transplants plus the most potent induction protocol there is, plus Velcade and Revlimid. The efficacy of Total Therapy, therefore, is probably higher than the data would suggest.
But the real takeaway from that data is the notion of a plateau. UAMS' philosophy is predicated on the idea that if somebody has not lost remission by year X, they are cured. This was seen in a type of childhood leukemia as that disease was treated in a manner similar to Total Therapy, and that disease is now 95% curable.
People pooh-pooh the notion of a plateau in Myeloma, but I've never seen anybody explain why. This includes my maintenance doctor who seemingly doesn't understand the statistical notion of an asymptote (this explains why I never finished the other post...I wanted to bring some graphs into this and perhaps in a post to come I shall). At the highest level, an asymptote in this context means that instead of the chance of recurrence being equal or random over time, it grows smaller as remission is sustained and eventually disappears. In the study below (from memory) this was noted at 11 years. Which is about where UAMS noted it at the time of Total Therapy 1 (pre Velcade and Revlimid and Thalidomide). UAMS is now in Total Therapy 4 and 5 for newly diagnosed low- and high-risk patients, respectively, and the plateau for low-risk appears to be at three years post-complete remission. That means that if one makes it three years, one can go off meds and know that they are very likely cured (95% or more likelihood).
This brings me to the other issue in this post. Revlimid. Now key to any treatment of the disease, and an integral part of maintenance therapy for me and others treated at UAMS and elsewhere. Last week, Celgene (makers of Revlimid) took a pounding in the stock market when data suggested that their drug causes secondary cancers, such as Acute Myelogenous Leukemia.
This, needless to say, is jarring.
The exact statistics are a little vague at this point and no dosing information is available, and whatever secondary cancers show up are probably not as bad as contending with the mortality rate from untreated Myeloma. But I still don't like it. Particularly because (although there is no specific data that I could find) it is suggested that the occurrence of secondary cancer increases significantly when one has a stem cell transplant.
The best longitudinal (i.e. over time) data on the use of Revlimid, of course, comes from UAMS where BB has been using it for around seven years. That is actually three years longer than the study that was completed that indicated the secondary cancer.
So I emailed UAMS to ask them to share their own statistics with me. They will have tracked hundreds of people under their protocol and they'll know how many, if any, have contracted secondary cancer.
I've not heard back yet...which means I may go directly to BB himself.
I'll be there next month anyway, so I will find the answer.
In the meantime...I look a little more askance at each blue-and-white pill that I take in the evenings. It's a little disturbing...
Wednesday, November 24, 2010
Tandem transplants proven to create longer life expectancy!!!!
In this study from the Myeloma Beacon, "long-term follow-up results indicate double transplantation is superior to single transplantation for Myeloma."
Some highlights:
* Significantly better 10-year overall and event free survival
* 12 percent of patients still in remission at a median follow-up time of 13.6 years
* Study shows that after 11 years, rates of recurrence were much less likely to relapse later
* Study included alkalyting agents (nasty chemo) but no novel agents (thalidomid, revlimid, velcade)
ALL of this supports BB, UAMS, and Total Therapy. BB refuses to put his patients into a blind trial because he thinks it would be unethical not to use the regimen he feels has the best chance of saving their life in order to prove a point. To my knowledge, this is the first published data of such a trial, and the first document outside of Arkansas that supports the tandem transplant concept.
That makes this extroardinarily important.
EVERYTHING BB was doing when I was diagnosed -- Relvimid in newly diagnosed patients, Velcade in newly diagnosed patients, maintenance therapy -- has subsequently been accepted by the establishment who at the time of my diagnosis said BB was crazy to do it. I've written here that tandem transplants would be the last domino to fall. But now, this data proves him to be right about that as well.
That makes this extroardinarily important.
EVERYTHING BB was doing when I was diagnosed -- Relvimid in newly diagnosed patients, Velcade in newly diagnosed patients, maintenance therapy -- has subsequently been accepted by the establishment who at the time of my diagnosis said BB was crazy to do it. I've written here that tandem transplants would be the last domino to fall. But now, this data proves him to be right about that as well.
I don't normally directly proselytize beyond telling my own story, and to be clear there are some for whom Total Therapy is not the right choice, and there are about 20% of patients who don't respond to any treatment.
But I **URGE** anybody newly diagnosed with this disease to explore the aggressive option. It may just save your life. There is a lot of literature and blogosphere commentary about being conservative -- I am one loud voice to the contrary. Explore your options -- and before considering something like JB's protocol, ask him how many of his patients are still alive after 10 years of treatment. Better still, ask ANY doctor with whom you are talking.
BB will tell you...to the exact number...how many people are alive after any given number of years. Beware any doctor that won't share that information, or sees too few Myeloma patients to keep track of it.
Okay, that's enough. What GREAT news for all of us, though!!!!! :)
Full text of the article copied below.
Long-Term Follow-Up Results Indicate Double Transplantation Is Superior To Single Transplantation For Myeloma
Long-term follow-up results from a clinical trial show that multiple myeloma patients who underwent two stem cell transplants remained in remission longer and also survived longer than patients who underwent one transplant. These findings are updated results from a previously published study comparing single versus double transplantation.
Multiple myeloma patients are commonly treated with stem cell transplantation. Several studies have shown a survival benefit to having a second transplant a couple of months after the first. However long-term follow-up results are necessary to confirm this.
Patients were recruited for the study between 1992 and 1997, and the initial findings were published in 2001. The current report includes updated results of the trial after following the patients for a median of 13.6 years.
The clinical trial evaluated the outcome of 90 patients (46 newly diagnosed and 44 pre-treated) who were planning on undergoing double (also known as tandem) stem cell transplantation using their own stem cells.
Of the 90 patients, 49 patients actually underwent the second transplantation.
Stem cells for the first transplant were collected prior to a preparative conditioning regimen of high-dosemelphalan (Alkeran) and then transplanted back after the melphalan treatment.
Stem cells for a second transplant are often collected at the same time as the stem cells for the first transplant, but some myeloma cells remain in the bone marrow and can be collected along with the stem cells. In an attempt to increase the efficacy of the regimen, this study collected stem cells for the second transplant several months after the first transplant.
Patients who were eligible for the second transplant received conditioning therapy with a combination of busulfan and cyclophosphamide (Cytoxan) and then received transplanted cells that were collected after their first transplant.
At the time of the trial, novel agents, such as thalidomide (Thalomid), Revlimid (lenalidomide), and Velcade(bortezomib), had not yet been introduced for the treatment of myeloma.
In both the original and updated reports, patients undergoing tandem transplantation experienced a median overall survival of 84 months. However, long-term follow-up showed that overall survival of patients who underwent single transplantation decreased from 49 months in the initial analysis to 44 months in the updated report.
Initially, the data showed that patients receiving tandem transplants were likely to have better survival than patients receiving a single transplant. However, only in the follow-up results was the difference between the two groups significant, demonstrating the importance of long-term follow-up of clinical trial participants.
Patients who received tandem transplants also achieved significantly better 10-year overall and event-free survival than patients who received a single transplant (34 percent versus 18 percent for overall survival, and 18 percent versus 0 percent for event-free survival). This data was similar to previous studies comparing single and double transplants.
The researchers noted that at the time of the follow-up analysis, 12 percent of patients who underwent tandem transplantation were still in remission. They also noted a “plateau” in remission rates after 130 months (almost 11 years), meaning that patients who were still in remission at that time were much less likely to relapse later. They attributed this long-term remission to the high-intensity of the regimen, not the use of stem cells collected after the first transplant.
The researchers concluded that the new long-term follow-up data confirm the promising results published in the original report. Additionally, the long-term results show that tandem transplantation is superior to single transplantation.
In their evaluation of the updated follow-up data, the researchers cautioned that it is important to consider a possible selection bias in the trial. Patients with a good prognosis may have been more likely to undergo a second transplant. The primary reasons for not undergoing the second transplant were insufficient stem cell harvest (23 percent, likely due to harvesting after high-dose melphalan), toxicity of previous treatment (9 percent), and progressive disease (8 percent).
For more information, please read the follow-up report in the Journal of Clinical Oncology (pdf) or the initial results published in Bone Marrow Transplantation.
Thanksgiving and a Forgotten Anniversary
Thursday, November 13, 2008. This was the date that I was diagnosed with Multiple Myeloma, and told that median life expectancy was five years.
It's a date that one might thing I would not let pass unnoticed. I knew that it was sometime in November, but I didn't recall the exact date. And I was going to make a blog post about it, but didn't get around to it -- been working too much lately.
At any rate, it came and went. I don't live my life as though I have Myeloma. I take pills at night, they have some side effects that I'll be glad to be rid of eventually. I get Velcade once a week -- I've grown to view these visits as respites from the frantic pace of my job. I go to Arkansas once every four months now, for a series of tests which generally bore me to tears, and at which I now fully expect to see no return of the cancer. And I wait, patiently but with growing confidence and conviction, that in two years time I will be off meds and will be told, definitively, by the doctor who sees more Myeloma than anybody in the world that it will not be coming back.
And so...I give Thanks tomorrow to the doctor who saved my life, my family and friends that make it worth saving, and everybody in the Myeloma community -- doctors, nurses, patients, caregivers and the precious followers of this blog who sustained me at my lowest and still inspire me with their own stories and their care for mine.
Warm wishes to all of you for this holiday.
Best,
Nick
It's a date that one might thing I would not let pass unnoticed. I knew that it was sometime in November, but I didn't recall the exact date. And I was going to make a blog post about it, but didn't get around to it -- been working too much lately.
At any rate, it came and went. I don't live my life as though I have Myeloma. I take pills at night, they have some side effects that I'll be glad to be rid of eventually. I get Velcade once a week -- I've grown to view these visits as respites from the frantic pace of my job. I go to Arkansas once every four months now, for a series of tests which generally bore me to tears, and at which I now fully expect to see no return of the cancer. And I wait, patiently but with growing confidence and conviction, that in two years time I will be off meds and will be told, definitively, by the doctor who sees more Myeloma than anybody in the world that it will not be coming back.
And so...I give Thanks tomorrow to the doctor who saved my life, my family and friends that make it worth saving, and everybody in the Myeloma community -- doctors, nurses, patients, caregivers and the precious followers of this blog who sustained me at my lowest and still inspire me with their own stories and their care for mine.
Warm wishes to all of you for this holiday.
Best,
Nick
Thursday, November 18, 2010
Crampwatch 2010 continues...
Haven't had one of these in a long time. Night before last I had a pretty sharp on that wasn't nearly as strong as others because it barely woke me from sleep...I couldn't determine if it was in the bottom of my foot or my right calf. It lasted maybe 15 seconds and I was able to return to sleep. My calf was sore when I woke later but it went away pretty quickly.
I missed two nights of magnesium -- last Friday and Saturday. They are the only nights I have missed since upping my dose to 1000mg per day. And this is also the first cramp I have experienced since that time. It could be coincidence, or could be a delayed effect...I will hopefully not experience another so I cannot guarantee I'll have enough data to figure out the correlation with precision!!
Was awoken last night from heartburn, despite taking Pantoprazole before bed the last two nights. This seems to be getting a bit worse over time, or at least bouncing around. Dex is the culprit. Sigh.
I missed two nights of magnesium -- last Friday and Saturday. They are the only nights I have missed since upping my dose to 1000mg per day. And this is also the first cramp I have experienced since that time. It could be coincidence, or could be a delayed effect...I will hopefully not experience another so I cannot guarantee I'll have enough data to figure out the correlation with precision!!
Was awoken last night from heartburn, despite taking Pantoprazole before bed the last two nights. This seems to be getting a bit worse over time, or at least bouncing around. Dex is the culprit. Sigh.
Tuesday, November 16, 2010
Where has the time gone?!?!? Highlights from the last month...
Hello folks. Honestly I'm not sure what's happened to the time but I'm alive and well!
Some observations from the last month:
* All markers still look good as can be. Platelets are a little low, howevering around 110, and didn't recover when I took the week off Revlimid but sometimes that lags a bit so we'll see how they look today. Platelet suppression is the biggest hematologist issue in my maintenance. I will -- I promise -- be putting a graph up showing platelets over time. Anyhow, in contrast, WBC has been a little higher, around 4-5 which is in the low end of normal but definitely normal. I would say this could be in response to fighting something off, except my CRP is very low indeed. Curious, but I ain't gonna knock it.
* In related news, I have gone a long stretch now without bronchitis or any cold / cough. This is remarkable and much appreciated! My little boy has had a nasty cough for about a month and somehow I've not contracted it. Could it be my immune system is righting itself, even through the haze of immunosuppressant medication that I'm on? I looked back to check the other Ig figures -- IgG remains where it should be and has been which is to say mildly suppressed in the 550-650 range. IgA was obliterated during primary therapy and now sits at very low normal around 100, but while I first thought this might have been a slow recovery that now gave me the stuff to fight off colds, it has really been bouncing around in the 90-100 range for the past year. IgM, likewise, was obliterated during therapy and remains quite low (below the point at which they begin measuring, which is 26) although it has peeked up into the range of measurement from time to time. So it's not these markers. I don't get T-cell or CD cell information other than in Arkansas, so perhaps I'll see what that looks like when I return there.
* I had a terrific brunch with a fellow MM traveler, EW, in Los Angeles a couple of weeks ago. He's been kind enough to comment here from time to time and has followed the blog for a while. He's an excellent guy and has a very interesting story, involving two doctors mentioned here from time. One of them, of whom I am not a fan (Dr. JB), is on the opposite end of the spectrum from Dr. BB. He thinks transplants are a waste of time. He pursues what I will call a trial and error approach to different combinations of drugs. Personally, I think his approach is dead wrong, but he is a doctor and I'm not, and as I have remarked to a friend that is less of a fan of transplants than I, if Dr. JB finds a cure, I will be in the front row cheering him on. Anyhow, upon his initial consult, Dr. JB looks at EW and says "ehhhh....I give you three to five years." What a jerk!!! Thankfully, EW went for a slightly stronger approach, even though he has not undertaken a transplant. And it's more than three to five years later, I believe, and EW feels great and has the disease under control. So...take that, Dr. JB!
* I was saddened to read in the MMRF's latest blurb that "Myeloma is incurable." With respect to Kathy, this is factually incorrect, a slap in the face to the work being done at Arkansas and elsewhere, insulting to those of us who have undergone aggressive treatment, and dangerously mis-informative to newly diagnosed patients. It would be accurate to say there is no definitive cure, or to suggest that there is no treatment that can cure everybody, or even that there are controversial treatments which might represent a cure for some patients but not all. However it is simply factually incorrect to state it the way they have. I understand their need to maintain urgency in what is a fundraising newsletter, essentially, but it is depressing nonetheless!
* Lastly, I am pleased to note that by sticking to drinking as much water as possible, I have now lost 1 stone 6!
Some observations from the last month:
* All markers still look good as can be. Platelets are a little low, howevering around 110, and didn't recover when I took the week off Revlimid but sometimes that lags a bit so we'll see how they look today. Platelet suppression is the biggest hematologist issue in my maintenance. I will -- I promise -- be putting a graph up showing platelets over time. Anyhow, in contrast, WBC has been a little higher, around 4-5 which is in the low end of normal but definitely normal. I would say this could be in response to fighting something off, except my CRP is very low indeed. Curious, but I ain't gonna knock it.
* In related news, I have gone a long stretch now without bronchitis or any cold / cough. This is remarkable and much appreciated! My little boy has had a nasty cough for about a month and somehow I've not contracted it. Could it be my immune system is righting itself, even through the haze of immunosuppressant medication that I'm on? I looked back to check the other Ig figures -- IgG remains where it should be and has been which is to say mildly suppressed in the 550-650 range. IgA was obliterated during primary therapy and now sits at very low normal around 100, but while I first thought this might have been a slow recovery that now gave me the stuff to fight off colds, it has really been bouncing around in the 90-100 range for the past year. IgM, likewise, was obliterated during therapy and remains quite low (below the point at which they begin measuring, which is 26) although it has peeked up into the range of measurement from time to time. So it's not these markers. I don't get T-cell or CD cell information other than in Arkansas, so perhaps I'll see what that looks like when I return there.
* I had a terrific brunch with a fellow MM traveler, EW, in Los Angeles a couple of weeks ago. He's been kind enough to comment here from time to time and has followed the blog for a while. He's an excellent guy and has a very interesting story, involving two doctors mentioned here from time. One of them, of whom I am not a fan (Dr. JB), is on the opposite end of the spectrum from Dr. BB. He thinks transplants are a waste of time. He pursues what I will call a trial and error approach to different combinations of drugs. Personally, I think his approach is dead wrong, but he is a doctor and I'm not, and as I have remarked to a friend that is less of a fan of transplants than I, if Dr. JB finds a cure, I will be in the front row cheering him on. Anyhow, upon his initial consult, Dr. JB looks at EW and says "ehhhh....I give you three to five years." What a jerk!!! Thankfully, EW went for a slightly stronger approach, even though he has not undertaken a transplant. And it's more than three to five years later, I believe, and EW feels great and has the disease under control. So...take that, Dr. JB!
* I was saddened to read in the MMRF's latest blurb that "Myeloma is incurable." With respect to Kathy, this is factually incorrect, a slap in the face to the work being done at Arkansas and elsewhere, insulting to those of us who have undergone aggressive treatment, and dangerously mis-informative to newly diagnosed patients. It would be accurate to say there is no definitive cure, or to suggest that there is no treatment that can cure everybody, or even that there are controversial treatments which might represent a cure for some patients but not all. However it is simply factually incorrect to state it the way they have. I understand their need to maintain urgency in what is a fundraising newsletter, essentially, but it is depressing nonetheless!
* Lastly, I am pleased to note that by sticking to drinking as much water as possible, I have now lost 1 stone 6!
Tuesday, October 19, 2010
The small magnesium pills...
...no longer are any easier to tolerate than the larger ones. It's hard to get a decent night's sleep these days. And yet, I suspect it's been at least two months since I had one of those horrible cramps so this is a small price to pay.
I have noticed, meanwhile (knock on wood) that it's been a while since I've had bronchitis. My IgG remains suppressed, per the plan. IgM is very slow to recover, seemingly, from the transplants. It's been below 26, which is the low end of the test, for a year. Whether it is 2 or 25, I'm not sure. As for IgA, this has steadily gone up from transplants and is now in the low-normal range. I will be graphing this shortly, along with a few other key graphs, as further information for those post-transplant.
Feeling good, other than tired. All else goes according to plan.
I have noticed, meanwhile (knock on wood) that it's been a while since I've had bronchitis. My IgG remains suppressed, per the plan. IgM is very slow to recover, seemingly, from the transplants. It's been below 26, which is the low end of the test, for a year. Whether it is 2 or 25, I'm not sure. As for IgA, this has steadily gone up from transplants and is now in the low-normal range. I will be graphing this shortly, along with a few other key graphs, as further information for those post-transplant.
Feeling good, other than tired. All else goes according to plan.
Friday, October 15, 2010
No more CYA from Arkansas...
I needed to get a copy of my bloodwork today to get my prescription for Lipitor renewed. Don't know if this is ironic in the proper sense of that word, but it does obviously remind me that my desire to avoid blood testing for any purposes, and my primary care doctor's insistence that I get it done before renewing Lipitor, is what led to my diagnosis two years ago right around this time.
At any rate, I got my information from Arkansas. I've looked at at least ten different immunofixation reports from Arkansas since I achieved complete remission. Each one first says there is no monoclonal protein under serum photoelectrophoresis, which is the less sensitive test. They read "M protein cannot be detected in this specimen at the level of sensitivity of [this test]." That's been that way for a while now.
Then we get to immunofixation, which is the more sensitive test -- in fact, the most sensitive one per BB, since he thinks immunofluorescence is wildly prone to error (in both false positive and false negatives).
Normally, the Arkansas text reads something like "The original M protein cannot be detected but may or may not be present. Faint monoclonal bands are observed. Indistinct IgG kappa bands are present." I have consistently been told that the indistinct kappa bands are a sign of recovering marrow and deep remission, and that the reference to the "may or may not" is mostly a CYA type of thing.
This most recent report, however is more definitive:
"The original IgG lamba M-Protein does not appear present. Indistinct IgG kappa bands present."
Things will continue to bounce around, but that is the most definitive statement I've seen that there's nothing there! Good news...enough to take my mind off the minor tingling in my feet.
At any rate, I got my information from Arkansas. I've looked at at least ten different immunofixation reports from Arkansas since I achieved complete remission. Each one first says there is no monoclonal protein under serum photoelectrophoresis, which is the less sensitive test. They read "M protein cannot be detected in this specimen at the level of sensitivity of [this test]." That's been that way for a while now.
Then we get to immunofixation, which is the more sensitive test -- in fact, the most sensitive one per BB, since he thinks immunofluorescence is wildly prone to error (in both false positive and false negatives).
Normally, the Arkansas text reads something like "The original M protein cannot be detected but may or may not be present. Faint monoclonal bands are observed. Indistinct IgG kappa bands are present." I have consistently been told that the indistinct kappa bands are a sign of recovering marrow and deep remission, and that the reference to the "may or may not" is mostly a CYA type of thing.
This most recent report, however is more definitive:
"The original IgG lamba M-Protein does not appear present. Indistinct IgG kappa bands present."
Things will continue to bounce around, but that is the most definitive statement I've seen that there's nothing there! Good news...enough to take my mind off the minor tingling in my feet.
Tuesday, October 12, 2010
Where has the time gone??? Also, 4 is better than 2 + 2.
Sorry to have vanished here, folks. Work flared up and I also found myself traveling to London for about a week, which was delightful other than the fact that I found myself working my normal 12 hour day on London time, followed by demanding calls from my boss in California that had me at it another 6 hours or so. It was a pretty rough stretch but I did manage to see some friends, have some nice meals, and walk around one of my favorite cities. The weather was great -- about 65 degrees (fahrenheit) and mostly sunny.
Anyhow, I'm back now, and will try to contribute with a bit more regularity!
I did want to point out that I made the switch -- inadvertently, due to running out of the large 500mg pills -- to 250mg pills of magnesium. I take four of these, rather than two of the big ones. They're the size of a plain ol' vitamin C pill versus the horse pills that are the 500mg versions.
The results on the GI tract appear to be a bit less extreme than the 500mg versions, so that's a good discovery and something to keep in mind.
In mojo news, I endured a particularly painful shot of testosterone in the gluteus maximus that stung like a mofo (not to be confused with mojo) for about ten days. I had the residual ache from the bone marrow on the left side, and the sting from the shot (a first, after five months of no-big-dealness) on the right. I felt like I needed one of those inflatable butt cushions to sit on. The bigger issue was sleeping -- couldn't lie down on either side or roll over at all without it hurting.
Fortunately, it went away. But today I have to go see the urologist again for another shot. Even worse, I have to consult with him since its been six months. "Consult with urologist" is a polite way of saying something probative (in the biological sense) is probably going to happen. Gulp.
I also have purchased, but not yet taken, this Maca root stuff. I'll ask the doctor about that today and hope to dissuade him from other aspects of the exam.
Anyhow, I'm back now, and will try to contribute with a bit more regularity!
I did want to point out that I made the switch -- inadvertently, due to running out of the large 500mg pills -- to 250mg pills of magnesium. I take four of these, rather than two of the big ones. They're the size of a plain ol' vitamin C pill versus the horse pills that are the 500mg versions.
The results on the GI tract appear to be a bit less extreme than the 500mg versions, so that's a good discovery and something to keep in mind.
In mojo news, I endured a particularly painful shot of testosterone in the gluteus maximus that stung like a mofo (not to be confused with mojo) for about ten days. I had the residual ache from the bone marrow on the left side, and the sting from the shot (a first, after five months of no-big-dealness) on the right. I felt like I needed one of those inflatable butt cushions to sit on. The bigger issue was sleeping -- couldn't lie down on either side or roll over at all without it hurting.
Fortunately, it went away. But today I have to go see the urologist again for another shot. Even worse, I have to consult with him since its been six months. "Consult with urologist" is a polite way of saying something probative (in the biological sense) is probably going to happen. Gulp.
I also have purchased, but not yet taken, this Maca root stuff. I'll ask the doctor about that today and hope to dissuade him from other aspects of the exam.
Wednesday, September 22, 2010
Two questions asked of Dr. GD in light of the weekend...
First of all, feeling much better, thank you all!
Second, some of you folks will remember -- and some of my friends in the UK may get a kick out of this -- that at some point over the last two years my now three year old pressed a series of buttons on my electronic scale so that it now outputs in stone. Being an Anglophile in the first place, and having a particular sense of humor, this strikes me as hilarious and now even if I could switch it back, I might not. I've long since lost the manual for that thing and I could probably search the Internet, but why bother?
At any rate, I'm down one stone one, as I believe it's said, from my peak, most of which is from (a) the weekend, and (b) manical followup. I have been sticking to 1,200 calories a day, drinking a TON of water (the one thing that every physician in the world probably agrees upon) and laying off alcohol -- and watching the pounds continue to ease off.
I'm not going to stay at 1,200 calories a day for much longer, and I'm certainly not going to abstain from wine for much longer either, but I'm going to continue with the water. I would like to drop maybe five more pounds before I stabilize for the moment. That will leave me about 10 pounds over my goal weight, but Rome wasn't built in a day and with luck I'll get the stomach flu again at some point in the next two years! :)
I told my wife I would GLADLY trade one of those chest colds for stomach flu any day of the week. At least there's a side benefit to the latter!
Anyhow, enough about my slightly contracting waistline and on to the medical topics.
I met with Dr. GD yesterday, who said I looked great, sighed again at the potency and longevity of BB's maintenance regime and then relented and agreed to continue administering it (obviously, as soon as he no longer does so I'm gone -- hope he realizes that). I did ask him two questions yesterday that might be of passing interest:
Question: Since I am taking a lot of Magnesium on a daily basis (1000 mg) am I in danger of becoming dependent upon Magnesium supplmenets? Will my body stop manufacturing Magnesium on its own?
Answer: I don't know -- it depends on your kidney functionality. He checked my serum Magnesium (I told him it was 2.0 when last checked two weeks ago -- and I was right) and he then said "you'll probably be fine."
Assessment: My kidneys have held up like champs through this whole thing, although at the beginning the Myeloma was starting to mess with them. Creatinine was, I think, as high as 1.6 or 1.8 when I started treatment but since the first round of chemo it has never been above 1.1 and was below 1.0 most of the time until maintenance. Increasing my water intake in my diet should help further with this. Ultimately, I'm not terribly worried -- as long as the body doesn't get used to needing external Magnesium it'll be all right.
Question: Since I am in seemingly constant low-level intestinal distress from the Magnesium, am I going to become dependent upon Immodium?
Answer: No.
Assessment: Phew!
Second, some of you folks will remember -- and some of my friends in the UK may get a kick out of this -- that at some point over the last two years my now three year old pressed a series of buttons on my electronic scale so that it now outputs in stone. Being an Anglophile in the first place, and having a particular sense of humor, this strikes me as hilarious and now even if I could switch it back, I might not. I've long since lost the manual for that thing and I could probably search the Internet, but why bother?
At any rate, I'm down one stone one, as I believe it's said, from my peak, most of which is from (a) the weekend, and (b) manical followup. I have been sticking to 1,200 calories a day, drinking a TON of water (the one thing that every physician in the world probably agrees upon) and laying off alcohol -- and watching the pounds continue to ease off.
I'm not going to stay at 1,200 calories a day for much longer, and I'm certainly not going to abstain from wine for much longer either, but I'm going to continue with the water. I would like to drop maybe five more pounds before I stabilize for the moment. That will leave me about 10 pounds over my goal weight, but Rome wasn't built in a day and with luck I'll get the stomach flu again at some point in the next two years! :)
I told my wife I would GLADLY trade one of those chest colds for stomach flu any day of the week. At least there's a side benefit to the latter!
Anyhow, enough about my slightly contracting waistline and on to the medical topics.
I met with Dr. GD yesterday, who said I looked great, sighed again at the potency and longevity of BB's maintenance regime and then relented and agreed to continue administering it (obviously, as soon as he no longer does so I'm gone -- hope he realizes that). I did ask him two questions yesterday that might be of passing interest:
Question: Since I am taking a lot of Magnesium on a daily basis (1000 mg) am I in danger of becoming dependent upon Magnesium supplmenets? Will my body stop manufacturing Magnesium on its own?
Answer: I don't know -- it depends on your kidney functionality. He checked my serum Magnesium (I told him it was 2.0 when last checked two weeks ago -- and I was right) and he then said "you'll probably be fine."
Assessment: My kidneys have held up like champs through this whole thing, although at the beginning the Myeloma was starting to mess with them. Creatinine was, I think, as high as 1.6 or 1.8 when I started treatment but since the first round of chemo it has never been above 1.1 and was below 1.0 most of the time until maintenance. Increasing my water intake in my diet should help further with this. Ultimately, I'm not terribly worried -- as long as the body doesn't get used to needing external Magnesium it'll be all right.
Question: Since I am in seemingly constant low-level intestinal distress from the Magnesium, am I going to become dependent upon Immodium?
Answer: No.
Assessment: Phew!
Tuesday, September 21, 2010
Lose weight now, ask me how!
Not Herbalife, folks.
I got a pretty nasty bug on Saturday. Turned into a fever by Saturday afternoon. Kept creeping up and eventually got close to 102, which is not good for anybody, much less for somebody in my delicate (i.e. immunosuppressed) state. Thankfully I had no other symptoms -- no coughing, congestion, sinus issues, etc. -- oh, well, other than crippling diarrhea 10X an hour. I took a couple of Tylenol to try to keep the fever down and called Arkansas.
They said not to be overly concerned, watch the fever, take TamiFlu twice daily and Levaquin (very powerful oral antibiotic) once daily. My insurance doesn't like to cover TamiFlu, unfortunately, so that's a pricey pill but I'll fight insurance later -- right now I just wanted to feel better!
The fever abated but the GI issues persist. At some point during all this, it dawned on me that the magnesium I take (which is ESSENTIAL in preventing those god-awful leg cramps) is the primary ingredient in the rocket fuel laxative that Arkansas prescribed at the beginning of my chemo. Magnesium Citrate. It's probably magnesium with a little lemon juice thrown in! And I'm taking that, DAILY, in high dose (1000 mg) -- without even the benefit of lemon juice to cut it!
Add stomach flu to that and you can imagine what it's been like here.
But I've lost 10 pounds and my face almost looks like it did before I started on dex.
Sign me up for the stomach flu diet!
I'm feeling somewhat better today, drinking lots of water, and hoping I can keep the weight off and maybe even use this to kickstart further weight loss!
I got a pretty nasty bug on Saturday. Turned into a fever by Saturday afternoon. Kept creeping up and eventually got close to 102, which is not good for anybody, much less for somebody in my delicate (i.e. immunosuppressed) state. Thankfully I had no other symptoms -- no coughing, congestion, sinus issues, etc. -- oh, well, other than crippling diarrhea 10X an hour. I took a couple of Tylenol to try to keep the fever down and called Arkansas.
They said not to be overly concerned, watch the fever, take TamiFlu twice daily and Levaquin (very powerful oral antibiotic) once daily. My insurance doesn't like to cover TamiFlu, unfortunately, so that's a pricey pill but I'll fight insurance later -- right now I just wanted to feel better!
The fever abated but the GI issues persist. At some point during all this, it dawned on me that the magnesium I take (which is ESSENTIAL in preventing those god-awful leg cramps) is the primary ingredient in the rocket fuel laxative that Arkansas prescribed at the beginning of my chemo. Magnesium Citrate. It's probably magnesium with a little lemon juice thrown in! And I'm taking that, DAILY, in high dose (1000 mg) -- without even the benefit of lemon juice to cut it!
Add stomach flu to that and you can imagine what it's been like here.
But I've lost 10 pounds and my face almost looks like it did before I started on dex.
Sign me up for the stomach flu diet!
I'm feeling somewhat better today, drinking lots of water, and hoping I can keep the weight off and maybe even use this to kickstart further weight loss!
Sunday, September 12, 2010
Progress and still doing well, per Arkansas
This last week I had the usual battery of tests. The MRI was particularly long this time as they now do something called DWIBS -- I looked it up but can't remember what it stands for but it essentially measures the heterogeneity / homogeneity of bone marrow.
Long story short, I remain in complete remission. Blood work was good. MRI showed that one of the five original active lesions -- the one in my left shoulder which was the first pain I felt associated with this disease -- has completely resolved. The other four are shrinking, albeit slowly.
My bone marrow came back with 7% plasma cells, and about 3% plasma in the core marrow. This crept up a bit and made me nervous but it was negative for Myeloma and neither BB nor Dr. U, his new assistant guy, were concerned.
BB was impatient for more progress in the bone healing, but he noted in his dictation that bone healing lags complete remission in the blood and that the median time from complete remission to resolution of lesions is 18 months, per their research. I am a year into CR, so hopefully within six months my bones will be fully healed.
He was sufficiently impatient that he looked into whether or not he could increase my Revlimid dosage while keeping me on protocol. But protocol is a maximum of 15mg 21 days a month, which is what I am on. Now I know he would take me off protocol immediately if he needed to do so in order to improve my outcome, and the fact that he did not do so made me feel a little better -- although I will admit to some nervousness between the plasma cell increase (I was below 5% before) and this other fact.
I will return in four months, now, not every three months. And hopefully we will see more improvement in the bones at that time. He thought another course of Zometa would not be a good idea, for what it's worth.
Lastly, I did ask folks about Maca root and nobody had heard of it. Still not sure what to do there...
Enjoy the rest of your weekends!
Sunday, September 5, 2010
Calling all homeopaths...or, Peruvian mojo powder?
A friend of mine was talking about something called Maca powder. It's evidently a root similar to a radish grown in the Andes. And apparently it is very potent stuff. Many benefits but chief among them promotion of libido. And there are legitimate scientific studies in both lab animals and humans that prove this out.
Of course all the hippie dippie websites that promote herbal remedies likewise promote this particular thing. However I'm willing to consider this one provided it (a) works and (b) doesn't conflict with any of the cancer therapies I am on. I'm prepared to accept item (a) above as a given (or in any rate, I would find out quickly) but item (b) remains an issue. I will ask BB and crew about that next week but in the off chance anybody here knew anything, I thought I'd mention it.
Other questions for BB and his crew next week: what's with this residual bone pain, how does the MRI look, how are long-term revlimid studies looking (BB is testing whether or not continuing with Revlimid in lower dosage after the three years of initial maintenance are over is beneficial), and what is the latest thinking on re-immunization.
Anybody else think of anything I should ask? :)
Hope you are enjoying your weekends!
Of course all the hippie dippie websites that promote herbal remedies likewise promote this particular thing. However I'm willing to consider this one provided it (a) works and (b) doesn't conflict with any of the cancer therapies I am on. I'm prepared to accept item (a) above as a given (or in any rate, I would find out quickly) but item (b) remains an issue. I will ask BB and crew about that next week but in the off chance anybody here knew anything, I thought I'd mention it.
Other questions for BB and his crew next week: what's with this residual bone pain, how does the MRI look, how are long-term revlimid studies looking (BB is testing whether or not continuing with Revlimid in lower dosage after the three years of initial maintenance are over is beneficial), and what is the latest thinking on re-immunization.
Anybody else think of anything I should ask? :)
Hope you are enjoying your weekends!
Friday, September 3, 2010
Crampwatch 2010...
Haven't had Velcade or Revlimid this week.
Split a delicious bottle of Cabernet last night (a 2006 Vineyard 29, for those playing the home game) with the wife. Dozed off watching TV and dragged myself to bed upstairs when I woke up. Didn't think about taking the magnesium...
Big mistake. Six AM wake up call from a cramp in my left calf.
Looks like I will need to take that stuff for a few weeks, at least, until all the Rev is out of my system. And even then, I'll probably be afraid to go to sleep! I'll be like the kids in Nightmare On Elm Street...
Split a delicious bottle of Cabernet last night (a 2006 Vineyard 29, for those playing the home game) with the wife. Dozed off watching TV and dragged myself to bed upstairs when I woke up. Didn't think about taking the magnesium...
Big mistake. Six AM wake up call from a cramp in my left calf.
Looks like I will need to take that stuff for a few weeks, at least, until all the Rev is out of my system. And even then, I'll probably be afraid to go to sleep! I'll be like the kids in Nightmare On Elm Street...
Thursday, September 2, 2010
Ongoing GI issues...
I am happy to be off meds for a couple of weeks right now. Velcade interferes with the bone marrow biopsy process so I halt Velcade a week before my visits to Little Rock. Revlimid requires aspirin to combat the potential side effect of deep-vein thrombosis, and aspirin thins the blood, and they don't want thin blood before any surgical procedure, bone marrow biopsies included. And dex, I suppose, is a rounding error in this mess. So I'm off VRD for two weeks -- the week before the tests and the week of the tests. A time for my white cells and platelets to recover -- and maybe even a chance for some of my IgG to recover, which is odd considering I was so consumed with suppressing it and eliminating all the bad protein there.
In fact, it's been some time since I've been concerned about Myeloma, per se. I really don't expect to see it again. Of course I am waiting for the formerly active lesions in my bones to heal, and next weeks' MRI -- as dull as that process is -- will be interesting to see. I do not think they will have knitted but some progress should be seen, I hope!
I must confess I am getting extremely tired of the constant diarrhea. Most recently I thought this was an impact of the Velcade and that I'd experience some relief when off it, but no such luck. I looked to see what I'm still taking -- aaah, Magnesium. The reliever of those awful leg cramps. Turns out causes diarrhea.
So to recap:
Velcade - causes diarrhea AND constipation
Revlimid - causes diarrhea AND constipation, particularly in combination with Dex
Dexamethasone - causes diarrhea
Magnesium - causes diarrhea big-time
Acyclovir - causes diarrhea
Lipitor - causes diarrhea
So, really, WTF?!?!? COULD I POSSIBLY BE EATING ANY MORE TO WRECK MY GI TRACT? AM I REALLY SURPRISED THAT I AM HAVING PROBLEMS?!?!?!?! :)
Not sure what to do about all this, but I'll ask BB and team next week. I'm not getting rid of the Magnesium -- those leg cramps are the worst. So maybe I'll just add Immodium to the mix and hope for the best. But I'm a little concerned that things may never be the same. Particularly since, according to studies on long-term Rev-Dex use, the worst may be yet to come:
Update from recent studies: Increased diarrhea in patients taking Revlimid-dex for an extended period of time (>8 months)
- In studies with more than 700 patients, patients taking Revlimid-dex for more than 8 months experienced significantly more diarrhea than patients taking dex alone (39% vs 28% with dex alone).
- In the majority of patients, diarrhea started after taking Revlimid-dex for 19 months.
Not sure what to do about all this, but I'll ask BB and team next week. I'm not getting rid of the Magnesium -- those leg cramps are the worst! In the grand scheme of things, I suppose, if somebody had told me "we'll get rid of the Myeloma, but you'll have diarrhea the rest of your life" I'd still have signed up to get rid of the Myeloma. This is a high class problem, albeit a low-class post! :)
Sunday, August 29, 2010
Quick statistical clarification...
A reader was kind enough to email me with a couple of questions about my last post and I realize it is not as clear as it might be.
There are 167 patients who are low-risk with at least six years of data. Of this 167, 18 lost remission -- the remaining 149 remain in remission at six years. The last to lose remission happened about 3.2 years after reaching remission. So put another way, everybody still in remission at that point is in remission about three years later -- despite being on no meds.
BB once told me that in a particular data set we were looking at, the group losing remission includes people that can no longer be considered as being in remission for any reason -- like failing to look both ways before they cross the street! I do not know if that holds true for this particular data set, but if it does, then the real rate of remission loss is lower than the figure above would imply (still less than 10 percent).
There are 167 patients who are low-risk with at least six years of data. Of this 167, 18 lost remission -- the remaining 149 remain in remission at six years. The last to lose remission happened about 3.2 years after reaching remission. So put another way, everybody still in remission at that point is in remission about three years later -- despite being on no meds.
BB once told me that in a particular data set we were looking at, the group losing remission includes people that can no longer be considered as being in remission for any reason -- like failing to look both ways before they cross the street! I do not know if that holds true for this particular data set, but if it does, then the real rate of remission loss is lower than the figure above would imply (still less than 10 percent).
The price of aggressive treatment...
Just heard that somebody who went the aggressive route was in complete remission before his second transplant...and then contracted an opportunistic infection with his weakened immune system that led to bacterial pneumonia. He is no longer with us.
Then again, I know people diagnosed after me who went with the "control the disease" approach that are no longer with us, either.
This is not yet a chronic condition like hypertension. This is cancer, and it will kill you if you aren't careful. There are no easy answers.
Treatment related mortality overall for the aggressive approach I took is around 1 percent, but that includes many elderly patients. For somebody my age, it is probably more like 1 in 1000. Those odds are good...unless you are that one. And when you encounter that one, it can be jarring.
I am on a day trip to Cincinatti for work (one night, two days, I suppose). I was cleaning out my carry-on satchel and found some papers that BB printed out for me back in May. At that time, he had six years of post-treatment data for Total Therapy 3. Of 149 low-risk patients in that protocol, not a single person who was in remission at 3.2 years had lost remission in the following 3 years. That is not an accident; it is not coincidence: it is cure.
But there is no choice without some risk.
Then again, I know people diagnosed after me who went with the "control the disease" approach that are no longer with us, either.
This is not yet a chronic condition like hypertension. This is cancer, and it will kill you if you aren't careful. There are no easy answers.
Treatment related mortality overall for the aggressive approach I took is around 1 percent, but that includes many elderly patients. For somebody my age, it is probably more like 1 in 1000. Those odds are good...unless you are that one. And when you encounter that one, it can be jarring.
I am on a day trip to Cincinatti for work (one night, two days, I suppose). I was cleaning out my carry-on satchel and found some papers that BB printed out for me back in May. At that time, he had six years of post-treatment data for Total Therapy 3. Of 149 low-risk patients in that protocol, not a single person who was in remission at 3.2 years had lost remission in the following 3 years. That is not an accident; it is not coincidence: it is cure.
But there is no choice without some risk.
Wednesday, August 18, 2010
Quick update...and one mans' myalgia is another man's OUCH!
Hi folks. Sorry to have vanished there for a bit. Lack of news plus a brief break for an annual golf vacation took me away from my post for a bit!
I continue to be contacted by newly diagnosed patients who stumble across this blog and I have to say it is one of the most rewarding things -- if you are reading this and are diagnosed and want to talk about anything, please drop me a line!
So...recent labs are all good. That's what we call "answer first" in my business. :) Now I can back up and say that I've noticed, when lying down on it, my lower right rib feels tender. There is no constant pain -- it goes away unless I am applying pressure to it by lying down on that side. I had Dr. GD take a look (which consisted of him pressing on my lower rib) and it didn't hurt. He was fine with it. Then again, he'd be fine if I had M-protein again. He doesn't fully get it. I resolved myself that I'd be getting MRI's in a few weeks anyway, as I return to Arkansas on September 7th.
Then the other day I noticed a pain in my right shoulder -- barely there...just kind of background noise during a round of golf. It went away later that day and has not returned.
Jill is keeping a brave face, suggesting that this bone pain is part of the healing process and comparing it to when our kids had "growing pains." A quick review of "growing pains" itself (thank you wikipedia) indicates that they are a misnomer and have nothing to do with bone growth (or any other kind of growth). So...there goes that theory.
Lastly, after a series of very good labs, I had a borderline high LDH (an enzyme test that indicates tissue breakdown and is a tertiary marker for cancer, treatment impact, etc.). I'm not overly concerned in isolation as it wasn't incredibly high (normal is 100-250 and it was 258...but two weeks before it was 140). Anyhow, these things were all combining to make me a little nervous.
For my part, as I said, I'll be getting an MRI soon enough for the bones. But the all-important immunofixation test, which I got back yesterday, is negative. Complete remission remains. Light chains totally normal as well. The likelihood of there being no M-protein and there being a problem is pretty low, and I'll be getting a bone marrow as well (great) in a couple of weeks as well.
I'm sure I'm still in complete remission and these random little things are just random little things. But I will be glad when the MRI reveals the lesions have all healed. I don't think I am there yet. BB says 1-2 years for resolution on MRI; I am at remission plus about 50 weeks so I've probably got six months to go.
I am half-afraid to mention any of this because knowing BB he will want fine needle aspirations of my rib and shoulder. If anybody in Arkansas is reading this, NO YOU MAY NOT DO THAT. :)
Speaking of pain, I had my first leg cramp in several weeks tonight. Left calf, pretty nasty. It struck at 4:30AM and I was afraid to lie back down for fear that it would happen again, so up I am. I saw a note in my file yesterday (yes, I had to ask twice to see it since GD's office never calls to tell me anything and I wanted to see the immunofixation results) that I had "no complains other than mild myalgia." Turns out myalgia is muscle pain, for those not in the medical profession. And if what I just experienced is mild, then a cerebral hemorrhage is a mild headache...
Lastly, gastrointestinal issues remain. I think the combined assault of VRD has left my GI tract in a state of disrray. I don't want to take anything over the counter for fear of crippling constipation. It's like a shower where the only two settings are too cold and too hot...one is afraid to make any adjustment. Anyhow, soon I will get a two week break from the meds and that will hopefully ease some of this.
That's all the news that is fit to print, and probably a few sentences more. :)
Be well, everybody.
I continue to be contacted by newly diagnosed patients who stumble across this blog and I have to say it is one of the most rewarding things -- if you are reading this and are diagnosed and want to talk about anything, please drop me a line!
So...recent labs are all good. That's what we call "answer first" in my business. :) Now I can back up and say that I've noticed, when lying down on it, my lower right rib feels tender. There is no constant pain -- it goes away unless I am applying pressure to it by lying down on that side. I had Dr. GD take a look (which consisted of him pressing on my lower rib) and it didn't hurt. He was fine with it. Then again, he'd be fine if I had M-protein again. He doesn't fully get it. I resolved myself that I'd be getting MRI's in a few weeks anyway, as I return to Arkansas on September 7th.
Then the other day I noticed a pain in my right shoulder -- barely there...just kind of background noise during a round of golf. It went away later that day and has not returned.
Jill is keeping a brave face, suggesting that this bone pain is part of the healing process and comparing it to when our kids had "growing pains." A quick review of "growing pains" itself (thank you wikipedia) indicates that they are a misnomer and have nothing to do with bone growth (or any other kind of growth). So...there goes that theory.
Lastly, after a series of very good labs, I had a borderline high LDH (an enzyme test that indicates tissue breakdown and is a tertiary marker for cancer, treatment impact, etc.). I'm not overly concerned in isolation as it wasn't incredibly high (normal is 100-250 and it was 258...but two weeks before it was 140). Anyhow, these things were all combining to make me a little nervous.
For my part, as I said, I'll be getting an MRI soon enough for the bones. But the all-important immunofixation test, which I got back yesterday, is negative. Complete remission remains. Light chains totally normal as well. The likelihood of there being no M-protein and there being a problem is pretty low, and I'll be getting a bone marrow as well (great) in a couple of weeks as well.
I'm sure I'm still in complete remission and these random little things are just random little things. But I will be glad when the MRI reveals the lesions have all healed. I don't think I am there yet. BB says 1-2 years for resolution on MRI; I am at remission plus about 50 weeks so I've probably got six months to go.
I am half-afraid to mention any of this because knowing BB he will want fine needle aspirations of my rib and shoulder. If anybody in Arkansas is reading this, NO YOU MAY NOT DO THAT. :)
Speaking of pain, I had my first leg cramp in several weeks tonight. Left calf, pretty nasty. It struck at 4:30AM and I was afraid to lie back down for fear that it would happen again, so up I am. I saw a note in my file yesterday (yes, I had to ask twice to see it since GD's office never calls to tell me anything and I wanted to see the immunofixation results) that I had "no complains other than mild myalgia." Turns out myalgia is muscle pain, for those not in the medical profession. And if what I just experienced is mild, then a cerebral hemorrhage is a mild headache...
Lastly, gastrointestinal issues remain. I think the combined assault of VRD has left my GI tract in a state of disrray. I don't want to take anything over the counter for fear of crippling constipation. It's like a shower where the only two settings are too cold and too hot...one is afraid to make any adjustment. Anyhow, soon I will get a two week break from the meds and that will hopefully ease some of this.
That's all the news that is fit to print, and probably a few sentences more. :)
Be well, everybody.
Wednesday, July 21, 2010
Through a glass, darkly
Okay, time to move the post about my GI issues down a bit! :)
As I went online to make my dutiful (doody-full?) post about some recent side-effects, I checked out the updates on a couple of Myeloma blogs I follow. One belongs to my friend Pat Killingsworth, who has taken a much more cautionary approach in his treatment than have I. I encourage people to read Pat's blog as it is a good counterpart to the more aggressive therapeutic route I have chosen and it gives people an idea of the range of options out there. Although I will ruefully admit that I stumbled upon Pat's blog when I was in the middle of treatment getting a blood transfusion and on that day, he happened to list the 10 reasons why you should never get a blood transfusion (I'm using some artistic license here) and I used this as a springboard to rant a bit about treatment philosophy at that time! :)
Anyhow, Pat is tirelessly dedicated to getting the word out there about all things Myeloma and while I have a markedly different point of view in terms of how aggressive to be, I have a tremendous respect and appreciation for Pat's energy and tireless dedication to get as much information out there as possible. With this in mind, I read with excitement his recent post that references an article talking about the effectiveness of maintenance therapy.
The article, which can be found on Pat's blog here, is titled "Post Stem Cell Transplant Maintenance Therapy Delays Multiple Myeloma Relapse in a Majority of Patients." A subtitle is that Revlimid in maintenance cuts relapse rates in half.
Pat and I draw somewhat different conclusions from this, but I view it as part of a puzzle being validated bit by bit. And we're getting to the reason for my Corinthian post title. The puzzle is completed for the majority of newly diagnosed patients but only a few people are looking at it in its totality. Other researchers are looking at bits and pieces of the puzzle without seeing the synergy the pieces have together. They are looking through darkened glass, unable to have the clarity of everything working together.
My diagnosing hematologist, SH, in November 2008 had the following things to say:
- "I don't believe in maintenance therapy"
- "We don't use Revlimid, that's saved for relapsed patients"
- "We [including MAYO and City of Hope] save Velcade for way down the line"
- "I do suggest stem cell transplants so you can be off drugs, but they do not prolong life"
Thankfully he also said I should look at the full spectrum of options including BB (whose last name, incidentally, he mistakenly contorted into an Italian version of its actual Germanic root) and I am immensely thankful that he was open-minded enough to tell me there were different points of view which is the SINGLE most valuable thing a newly diagnosed patient needs to know, and which is part of the bond that ties Pat's blog and mine together despite their very different approaches to treatment.
At any rate, let's look first at the different treatment philosophies accompanying these statements.
1. Maintenance therapy:
SH position in November 2008: "I don't believe in maintenance therapy."
BB position in November 2008 (and much earlier): Maintenance therapy is essential post transplant. Without it the Myeloma is all but certain to return; with it there is a high likelihood of cure in the 85% of newly diagnosed patients that are low-risk.
Current research: prolonged remission arises from maintenance therapy. Excluding Arkansas, the data set does not exist to prove or disprove any connection to event-free survival. Yet.
2. Revlimid
SH position, November 2008: "I don't use Revlimid in new patients, I save it for relapse."
BB position, November 2008: Revlimid is a part of treatment for newly diagnosed patients because of its superior anti-Myeloma effects and better tolerability than Thalidomide, which was the standard Immuno-Modulatory drug in Myeloma therapy prior to Revlimid. However, Revlimid is NOT used prior to transplant both because (1) it suppresses platelet recovery which would make the time to recovery from transplants much longer, and (2) it represents yet another type of therapy to which the Myeloma will not have been previous exposed (and to which drug resistance will have been developed) and therefore enhances the effectiveness of treatment if used after Thalidomide.
Current research: most mainline therapy now uses Revlimid in newly-diagnosed patients...a position that was so novel at the time of my diagnosis that Dr. SF at City of Hope used me as a test case to open a debate amongst his peers about whether or not to use Revlimid in newly-diagnosed cases. What current research seems to be missing, though, is this platelet issue -- to which my own labs attest. Part of it is, though, that extended Thalidomide can be pretty nasty. For this reason, and because of drug resistance, BB does at most two cycles of induction for low-risk patients plus some treatment during transplants and some consolidation -- compare that with induction elsewhere which is usually a year or longer!!
3. Velcade
SH position, November 2008: "We save Velcade for way down the line."
BB position, November 2008: "Velcade is a game changer and increases the cure rate of newly diagnosed patients (including high-risk) from about 40% to over 60%. It is a critical part of all phases of therapy for the newly diagnosed patient."
Current research: under investigation, but whereas it was almost unheard of for people to use Velcade as frontline therapy, now there are a multitude of trials doing just that.
4. Stem Cell Transplants
SH position, November 2008: "They don't prolong life."
BB position, November 2008: "They cure the majority of cases."
Current research: the jury is out. No data outside Arkansas exists to show the impact; Arkansas' data shows it pretty clearly but others either don't believe the data or have other issues with it. I believe this will be the last piece of the puzzle that others eventually prove out -- but it may not happen before something else better comes along.
You can see where I am going with this: researchers outside UAMS are seeing pieces of the puzzle, but not seeing the whole thing. Maintenance, in isolation without the therapy that precedes it, is shown to prolong remission. Great. But that's missing the fact the maintenance, as part of Total Therapy, is curative in the majority of cases. Revlimid, in isolation without the therapy that surrounds it, is more effective than Thalidomide -- but they, too, are only seeing part of the situation. Velcade, same deal.
All of these, though, are being proven out by research.
As I said above, my guess is tandem transplants will be the last thing to be proven out -- and hopefully by the time BB will have been put out of business by a new novel drug.
That is one thing that Pat and I both fervently hope for -- and I think BB won't mind the day when that happens either!
Sorry for the long post -- hope you got something of value from it. If not, low-brow poop jokes are just a few mouse clicks away.
As I went online to make my dutiful (doody-full?) post about some recent side-effects, I checked out the updates on a couple of Myeloma blogs I follow. One belongs to my friend Pat Killingsworth, who has taken a much more cautionary approach in his treatment than have I. I encourage people to read Pat's blog as it is a good counterpart to the more aggressive therapeutic route I have chosen and it gives people an idea of the range of options out there. Although I will ruefully admit that I stumbled upon Pat's blog when I was in the middle of treatment getting a blood transfusion and on that day, he happened to list the 10 reasons why you should never get a blood transfusion (I'm using some artistic license here) and I used this as a springboard to rant a bit about treatment philosophy at that time! :)
Anyhow, Pat is tirelessly dedicated to getting the word out there about all things Myeloma and while I have a markedly different point of view in terms of how aggressive to be, I have a tremendous respect and appreciation for Pat's energy and tireless dedication to get as much information out there as possible. With this in mind, I read with excitement his recent post that references an article talking about the effectiveness of maintenance therapy.
The article, which can be found on Pat's blog here, is titled "Post Stem Cell Transplant Maintenance Therapy Delays Multiple Myeloma Relapse in a Majority of Patients." A subtitle is that Revlimid in maintenance cuts relapse rates in half.
Pat and I draw somewhat different conclusions from this, but I view it as part of a puzzle being validated bit by bit. And we're getting to the reason for my Corinthian post title. The puzzle is completed for the majority of newly diagnosed patients but only a few people are looking at it in its totality. Other researchers are looking at bits and pieces of the puzzle without seeing the synergy the pieces have together. They are looking through darkened glass, unable to have the clarity of everything working together.
My diagnosing hematologist, SH, in November 2008 had the following things to say:
- "I don't believe in maintenance therapy"
- "We don't use Revlimid, that's saved for relapsed patients"
- "We [including MAYO and City of Hope] save Velcade for way down the line"
- "I do suggest stem cell transplants so you can be off drugs, but they do not prolong life"
Thankfully he also said I should look at the full spectrum of options including BB (whose last name, incidentally, he mistakenly contorted into an Italian version of its actual Germanic root) and I am immensely thankful that he was open-minded enough to tell me there were different points of view which is the SINGLE most valuable thing a newly diagnosed patient needs to know, and which is part of the bond that ties Pat's blog and mine together despite their very different approaches to treatment.
At any rate, let's look first at the different treatment philosophies accompanying these statements.
1. Maintenance therapy:
SH position in November 2008: "I don't believe in maintenance therapy."
BB position in November 2008 (and much earlier): Maintenance therapy is essential post transplant. Without it the Myeloma is all but certain to return; with it there is a high likelihood of cure in the 85% of newly diagnosed patients that are low-risk.
Current research: prolonged remission arises from maintenance therapy. Excluding Arkansas, the data set does not exist to prove or disprove any connection to event-free survival. Yet.
2. Revlimid
SH position, November 2008: "I don't use Revlimid in new patients, I save it for relapse."
BB position, November 2008: Revlimid is a part of treatment for newly diagnosed patients because of its superior anti-Myeloma effects and better tolerability than Thalidomide, which was the standard Immuno-Modulatory drug in Myeloma therapy prior to Revlimid. However, Revlimid is NOT used prior to transplant both because (1) it suppresses platelet recovery which would make the time to recovery from transplants much longer, and (2) it represents yet another type of therapy to which the Myeloma will not have been previous exposed (and to which drug resistance will have been developed) and therefore enhances the effectiveness of treatment if used after Thalidomide.
Current research: most mainline therapy now uses Revlimid in newly-diagnosed patients...a position that was so novel at the time of my diagnosis that Dr. SF at City of Hope used me as a test case to open a debate amongst his peers about whether or not to use Revlimid in newly-diagnosed cases. What current research seems to be missing, though, is this platelet issue -- to which my own labs attest. Part of it is, though, that extended Thalidomide can be pretty nasty. For this reason, and because of drug resistance, BB does at most two cycles of induction for low-risk patients plus some treatment during transplants and some consolidation -- compare that with induction elsewhere which is usually a year or longer!!
3. Velcade
SH position, November 2008: "We save Velcade for way down the line."
BB position, November 2008: "Velcade is a game changer and increases the cure rate of newly diagnosed patients (including high-risk) from about 40% to over 60%. It is a critical part of all phases of therapy for the newly diagnosed patient."
Current research: under investigation, but whereas it was almost unheard of for people to use Velcade as frontline therapy, now there are a multitude of trials doing just that.
4. Stem Cell Transplants
SH position, November 2008: "They don't prolong life."
BB position, November 2008: "They cure the majority of cases."
Current research: the jury is out. No data outside Arkansas exists to show the impact; Arkansas' data shows it pretty clearly but others either don't believe the data or have other issues with it. I believe this will be the last piece of the puzzle that others eventually prove out -- but it may not happen before something else better comes along.
You can see where I am going with this: researchers outside UAMS are seeing pieces of the puzzle, but not seeing the whole thing. Maintenance, in isolation without the therapy that precedes it, is shown to prolong remission. Great. But that's missing the fact the maintenance, as part of Total Therapy, is curative in the majority of cases. Revlimid, in isolation without the therapy that surrounds it, is more effective than Thalidomide -- but they, too, are only seeing part of the situation. Velcade, same deal.
All of these, though, are being proven out by research.
As I said above, my guess is tandem transplants will be the last thing to be proven out -- and hopefully by the time BB will have been put out of business by a new novel drug.
That is one thing that Pat and I both fervently hope for -- and I think BB won't mind the day when that happens either!
Sorry for the long post -- hope you got something of value from it. If not, low-brow poop jokes are just a few mouse clicks away.
GI Chess -- not for the high-brow
If you know what this picture is from, then you can guess what this post is going to be about.
I have remarked before that this is not a dignified disease.
I have also remarked that if this blog is of value, it is in large part because of unflinching honesty. One of the most fearful things about undergoing Myeloma treatment is the unknown. So whether it's the uncomfortable reality of diagnoses, the uncomfortable reality of treatment, the uncomfortable reality of side-effects, etc. I hope that by faithfully reporting what happens to me, others who are undergoing treatment or considering it can at least know what they can expect might happen.
Which brings me to this post. I type this knowing I'm going to have another post shortly therafter so at least this won't be at the top of my page for long!
By the way, folks, thank you very much for the active comments re: supplements on the last post. If I asked my doctor here about them, he would say "ask Arkansas" so I will probably call BJ this week. I have discontinued Milk Thistle. I still take this liver.52 product which does seem to have brought down AST so it is having a positive effect but I will cover it off with BJ as this seems the prudent thing to do. I don't want any side effects!
Now...speaking of side-effects...
My GI tract has been in a state of war kind of like the Korean peninsula. I modulate Senna to keep an uneasy truce between the white pieces (constipation) and the black pieces (you can guess). Most matches are played to a draw.
On the white side, we have Revlimid (both individually and particularly when combined with Dex). On the black side we have Velcade, Magnesium supplements, the impact of Augmentin (strong antibiotic I am currently taking to get rid of chest cold #7 since maintenance therapy began), and potentially the chest cold itself. Actually I think Velcade plays both sides at times.
For the last five days now, the black pieces are beating the living daylights out of the white pieces. There is one white king desperately shifting around while about six queens are zipping about him.
Two oft-quoted pieces of research about diarrhea: (1) it is hereditary (it runs in the genes) and (2) while some people think it's funny, it's really....well. Anyhow, a third observation is that after five days it's starting to get very old. I am not yet taking Immodium because I took Dex last night and figured the natural advantage that gives to the White side of the board will kick in and if there's one thing I've learned in this process, it's about the dangers of over-steering. In fact this five day binge kicked in because I overdid Senna last week. But if things don't get settled down in the next 48 hours, I'll be on Immodium rapidly.
Meanwhile I'm drinking plenty of water.
I have another important post to make that I had hoped would bump this one down a couple of notches. But sadly I have to run to a breakfast meeting -- so this one will be here for a bit, in all its glory.
I'm not going to embed the video, but for those that saw the photo above and are pining for some toilet humor, the scene you are looking for is here:
http://www.youtube.com/watch?v=wbDiujuv6rQ
Thursday, July 15, 2010
Milk thistle -- hold the thistles please!
First, the second half of my return from Orlando story. To make a long story short, I am learning that spicy food of certain types do not sit well on Thursdays given Velcade. I had some Mexican in the Orlando airport and spent the first hour of the flight uncomfortable, the second hour very uncomfortable, and the next 15 minutes throwing up in the toilet at the back of the plane. After which I felt considerably better.
Things are going well. I am noticing that constipation requires earlier action. My cadence was one senna pill on Wednesday evenings and maybe on on Thursday mornings. I have found now that Tuesday night, Wednesday morning and Wednesday night are required. May take one more tonight. I'm not sure if it gets worse as I take more Revlimid during a given cycle but I have five more pills to go on this one.
Otherwise things are good!
Now here is a chance for you lurking homeopaths (those that I haven't scared away by my complete embrace of deadly chemicals) to chime in. I didn't lose and regain my tastebuds two separate times to never enjoy wine again. In fact I enjoy it quite a bit. Plus my liver is lightly taxed by my lipitor. There are four liver markers -- two are always fine, one is usually fine, and the fourth is consistently a little high. I have been taking liver.52 which I get from Amazon and that brought the third marker well into the normal range, but the fourth marker -- ALT which is the short-term enzymatic response to lipitor and alcohol, is still around 100 when it should be more like 70. These are not catastrophic numbers and BB as well as my local oncologist GD say everything is fine (BB's one comment in dictation to my file last year was that "patient probably needs to drink more"). But just for kicks I bought some Milk Thistle which I've been told is good at helping out the ol' liver.
Well I took this for about three weeks and I noticed what I thought was bone pain in the lower right ribs -- which scared me at first because that's where one of my lesions was. But it's actually a more dull pain and it's the liver! So needless to say, I'm stopping the Milk Thistle. I will look and see what's going on with the blood chemistry. If it brought down the ALT I may continue with it on a smaller dose (I had been using the "management" dose of 8 capsules a day versus the "maintenance" dose of half that).
Not the most exciting news, but it had been a while since my last post, so...
Things are going well. I am noticing that constipation requires earlier action. My cadence was one senna pill on Wednesday evenings and maybe on on Thursday mornings. I have found now that Tuesday night, Wednesday morning and Wednesday night are required. May take one more tonight. I'm not sure if it gets worse as I take more Revlimid during a given cycle but I have five more pills to go on this one.
Otherwise things are good!
Now here is a chance for you lurking homeopaths (those that I haven't scared away by my complete embrace of deadly chemicals) to chime in. I didn't lose and regain my tastebuds two separate times to never enjoy wine again. In fact I enjoy it quite a bit. Plus my liver is lightly taxed by my lipitor. There are four liver markers -- two are always fine, one is usually fine, and the fourth is consistently a little high. I have been taking liver.52 which I get from Amazon and that brought the third marker well into the normal range, but the fourth marker -- ALT which is the short-term enzymatic response to lipitor and alcohol, is still around 100 when it should be more like 70. These are not catastrophic numbers and BB as well as my local oncologist GD say everything is fine (BB's one comment in dictation to my file last year was that "patient probably needs to drink more"). But just for kicks I bought some Milk Thistle which I've been told is good at helping out the ol' liver.
Well I took this for about three weeks and I noticed what I thought was bone pain in the lower right ribs -- which scared me at first because that's where one of my lesions was. But it's actually a more dull pain and it's the liver! So needless to say, I'm stopping the Milk Thistle. I will look and see what's going on with the blood chemistry. If it brought down the ALT I may continue with it on a smaller dose (I had been using the "management" dose of 8 capsules a day versus the "maintenance" dose of half that).
Not the most exciting news, but it had been a while since my last post, so...
Friday, July 2, 2010
Notes from Orlando and MD Anderson
I just returned from a week in Orlando for my company's annual strategic offsite with our board of directors.
A couple of things of note.
First being, Velcade waits for no man so I made arrangements with the help of PinnacleCare to be seen by a Dr. JH at MD Anderson in Orlando, who had agreed to administer my Velcade.
MDA there is quite nice, reminded me a bit of City of Hope in some ways. After a fairly lengthy signing in process (complete with a cool scanner that reads your palmprint!) I then checked in with a nurse, who took my story. She didn't know anything about Total Therapy and was rather amazed at the long list of medicines I checked off. She left, and a few minutes later Dr. JH entered.
Dr. JH *did* know about Total Therapy and he looked at me as though he was seeing one of the people from that soccer team that lived in the Andes off the flesh of their fallen comrades -- like you've heard the stories but can't believe they are standing before you. He asked me if I had ever met BB; I told him he was personally invested in my care and that I knew him quite well. He described my current regime as "the Mother of all Maintenance Programs" which seemed to confirm the strength of this package -- I later researched a bit on JH and found out he is engaged in a not-so-interesting-trial about Revlimid and one other drug as a means of treating recurrent Myeloma. Hello....2003 called, they want the concept back!
Anyhow, the staff was very nice, I was put in a nice semi-private infusion room that reminded me of a much nicer version of the transplant floor in Arkansas, all wood paneling, nice TV, nice chairs that were clearn with germicidal gel, etc.
They had the freezing spray, which made insertion of the needle in the port a snap. They drew blood, I sat back and did some work. The only real downside was how long it took -- it took forever for their lab to process the blood, then get approval of the Velcade, then mix the Velcade, etc. I was in the place from 7:30AM to 1:30PM. Between that and the cab time back and forth, it was a good 7 hours.
Nonetheless, Velcade administered, and I get on with my life. I took my dex that night and on Wednesday had one of the more productive days I've ever had -- problem solving left and right on this deal I am working through, full of energy, all the "positive" attributes of dex and I am once again indebted to the reader who suggested this be taken before bedtime rather than in the morning.
Anyhow, Wednesday evening rolls around and I take my symphony of pills before bedtime. Among them, Ambien. Critical to making sure I sleep well, and I had a good eight hours that I could sleep since my work was done and people were starting to head back to the west coast already at the conclusion of the meetings.
I then proceed to stare at the ceiling all night. There's no worse feeling than knowing you have to sleep and being unable to sleep. I had not brought my Pantoprazole (superstrength antacid, needed to combat some of Dex's less good side effects) on this trip, hoping I could just tough it out (bad idea, more to follow). So I had terrible heartburn and hiccups, which I thought might be contributing to my lack of ability to sleep. But I was awake...at 2AM thinking about work...at 3AM thinking about work...at 4AM thinking about work...at 5AM as my colleague slipping some work materials I had him working on under my door...at 6AM...and then I was so bloody tired at around 7:30 I thought I might be drifting off.
That's when the downside of staying "on property" (as well call it) became apparent. The kids in the room next door started shrieking at the top of their lungs. Note to the parents: I'm very excited that your three and four years olds want to go to Epcot center, but letting them just scream "EPCOT! EPCOT! EPCOT" unabated for two freakin' minutes is uncalled for. Then the silent (momentarily) parents must have stopped one of them because that one just started screaming bloody murder while the other one kept screaming "EPCOT!". And when I say "bloody murder" I mean it -- that kid was top-of-lungs screaming like you can't imagine. After 20 straight seconds I thought "my God, no kid can keep that up, they're gonna tire from lack of oxygen." No such luck. The superhuman kid just kept bellowing away.
I sat there, marveling at how wonderful my kids are and wondering if I should pound on the wall, but lacking the strength or energy to even make up my mind, much less get out of bed and do it.
At this point, previously-silent mother screamed "I NEED SOME TIME TO MYSELF!!!!" and the door slammed. Followed by previously-silent father saying "now look what happened" to his screaming kids.
I got up to take a shower...and then...I noticed...on the counter...like a lost little lamb that had slipped from my grasp before being swallowed last night....
the Ambien.
A couple of things of note.
First being, Velcade waits for no man so I made arrangements with the help of PinnacleCare to be seen by a Dr. JH at MD Anderson in Orlando, who had agreed to administer my Velcade.
MDA there is quite nice, reminded me a bit of City of Hope in some ways. After a fairly lengthy signing in process (complete with a cool scanner that reads your palmprint!) I then checked in with a nurse, who took my story. She didn't know anything about Total Therapy and was rather amazed at the long list of medicines I checked off. She left, and a few minutes later Dr. JH entered.
Dr. JH *did* know about Total Therapy and he looked at me as though he was seeing one of the people from that soccer team that lived in the Andes off the flesh of their fallen comrades -- like you've heard the stories but can't believe they are standing before you. He asked me if I had ever met BB; I told him he was personally invested in my care and that I knew him quite well. He described my current regime as "the Mother of all Maintenance Programs" which seemed to confirm the strength of this package -- I later researched a bit on JH and found out he is engaged in a not-so-interesting-trial about Revlimid and one other drug as a means of treating recurrent Myeloma. Hello....2003 called, they want the concept back!
Anyhow, the staff was very nice, I was put in a nice semi-private infusion room that reminded me of a much nicer version of the transplant floor in Arkansas, all wood paneling, nice TV, nice chairs that were clearn with germicidal gel, etc.
They had the freezing spray, which made insertion of the needle in the port a snap. They drew blood, I sat back and did some work. The only real downside was how long it took -- it took forever for their lab to process the blood, then get approval of the Velcade, then mix the Velcade, etc. I was in the place from 7:30AM to 1:30PM. Between that and the cab time back and forth, it was a good 7 hours.
Nonetheless, Velcade administered, and I get on with my life. I took my dex that night and on Wednesday had one of the more productive days I've ever had -- problem solving left and right on this deal I am working through, full of energy, all the "positive" attributes of dex and I am once again indebted to the reader who suggested this be taken before bedtime rather than in the morning.
Anyhow, Wednesday evening rolls around and I take my symphony of pills before bedtime. Among them, Ambien. Critical to making sure I sleep well, and I had a good eight hours that I could sleep since my work was done and people were starting to head back to the west coast already at the conclusion of the meetings.
I then proceed to stare at the ceiling all night. There's no worse feeling than knowing you have to sleep and being unable to sleep. I had not brought my Pantoprazole (superstrength antacid, needed to combat some of Dex's less good side effects) on this trip, hoping I could just tough it out (bad idea, more to follow). So I had terrible heartburn and hiccups, which I thought might be contributing to my lack of ability to sleep. But I was awake...at 2AM thinking about work...at 3AM thinking about work...at 4AM thinking about work...at 5AM as my colleague slipping some work materials I had him working on under my door...at 6AM...and then I was so bloody tired at around 7:30 I thought I might be drifting off.
That's when the downside of staying "on property" (as well call it) became apparent. The kids in the room next door started shrieking at the top of their lungs. Note to the parents: I'm very excited that your three and four years olds want to go to Epcot center, but letting them just scream "EPCOT! EPCOT! EPCOT" unabated for two freakin' minutes is uncalled for. Then the silent (momentarily) parents must have stopped one of them because that one just started screaming bloody murder while the other one kept screaming "EPCOT!". And when I say "bloody murder" I mean it -- that kid was top-of-lungs screaming like you can't imagine. After 20 straight seconds I thought "my God, no kid can keep that up, they're gonna tire from lack of oxygen." No such luck. The superhuman kid just kept bellowing away.
I sat there, marveling at how wonderful my kids are and wondering if I should pound on the wall, but lacking the strength or energy to even make up my mind, much less get out of bed and do it.
At this point, previously-silent mother screamed "I NEED SOME TIME TO MYSELF!!!!" and the door slammed. Followed by previously-silent father saying "now look what happened" to his screaming kids.
I got up to take a shower...and then...I noticed...on the counter...like a lost little lamb that had slipped from my grasp before being swallowed last night....
the Ambien.
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