Without caregivers, it would be unthinkably challenging to those of us battling this disease.
Give your caregiver a hug today.
There you have it: my briefest and least clinical post, but it is as heartfelt as any I've made.
Wednesday, April 27, 2011
Wednesday, April 20, 2011
A bit more on killer cells at UAMS...
For those interested, the trial in which BrB will be enrolled is described right here. If this works for high risk patients, it will likely work for all. Let's all keep our fingers crossed!
Another example of why I love my doctor
A fellow traveller -- well, actually, we're going to call this guy a warrior...BB are his initials, and he's not related to my marvelous doctor -- has been through hell, and today was a neat example of why I love BB (both of them, really, but the doctor for purposes of this story).
This is gonna get confusing so we'll call the patient BrB and the doctor BB.
You have read a lot in my blog about low-risk versus high-risk disease. About 85% of patients, according to the 70- and 80-gene studies at UAMS that are by far the most advanced in the world for this disease, are classified as low-risk disease and they are eligible for the TT4 protocol for low-risk disease. This is what I underwent. I had some bad characteristics within this 85%, such as cytogeneic abnormalities and a "proliferation" subtype that meant my disease was more aggressive than some, but I was still low risk. And BB believe he is curing about 65% of newly-diagnosed low-risk disease patients through the TT4 protocol.
The results and prognosis for high-risk candidates are considerably more dire. The treatment protocol is more aggressive even than the already-aggressive TT4 protocol (I believe there are five or six additional chemo agents used, on top of the four used in TT4 -- and note this excludes "pseudo" chemo like thalidomide, Velcade, etc. - I'm talking real, old-school mustard gas chemo). And cure / survival rates are much lower. Only about 20%, if memory serves, are cured, and most people live only 3-4 years with high risk disease.
My wife and I met BrB and his lovely wife as we were in the middle of therapy. They are delightful, warm people and it pains us to know all that BrB has had to go through. On top of it being high-risk, he is also non-secretory, which means his disease does not show up in his blood (M-spike) or his urine (Bence Jones Protein). It is only through PET Scans and bone marrow biopsies that it is revealed.
BrB enjoyed one year of remission after this brutal regimen, and about six months ago it came back. I'll spare the details, but he's been through extremely aggressive chemo, has had to deal with horrible respiratory complications, hospital stays for that where he's contracted opportunistic infections, etc. Throughout this, his lovely wife J has been so supportive and tried to keep his spirits up. BrB, understandably, has had some real challenges but he manages to soldier on with dignity even if his spirit and body is exhausted.
Several days ago, BB demanded to know where some test results were. They hadn't been done. BB went ballistic and the tests were done. And then he saw that there was some residual myeloma. BrB was saddened, obviously, until -- and this is where it gets cool almost like a scene in a movie, BB called the lab.
"How close are we with the killer cells?"
"One week."
"I want BrB to be the first to receive them."
In addition to the existing Total Therapy regiments, BB and his colleagues have been working on killer cells for myeloma. This has been done successfully in leukemia in London, and it has been demonstrated to be highly effective in myeloma-stricken mice at UAMS.
BrB will be put on Pomalidomide (next-gen Revlimid) to keep the myeloma in check until May, when he can get enrolled as the second (there's one other guy, turns out) patient in this trial that has shown tremendous promise.
My thoughts and prayers go out to BrB and J, both for their own individual sakes and as hopefully an example of another important breakthrough driven by BB's steadfast desire to cure this disease.
This is gonna get confusing so we'll call the patient BrB and the doctor BB.
You have read a lot in my blog about low-risk versus high-risk disease. About 85% of patients, according to the 70- and 80-gene studies at UAMS that are by far the most advanced in the world for this disease, are classified as low-risk disease and they are eligible for the TT4 protocol for low-risk disease. This is what I underwent. I had some bad characteristics within this 85%, such as cytogeneic abnormalities and a "proliferation" subtype that meant my disease was more aggressive than some, but I was still low risk. And BB believe he is curing about 65% of newly-diagnosed low-risk disease patients through the TT4 protocol.
The results and prognosis for high-risk candidates are considerably more dire. The treatment protocol is more aggressive even than the already-aggressive TT4 protocol (I believe there are five or six additional chemo agents used, on top of the four used in TT4 -- and note this excludes "pseudo" chemo like thalidomide, Velcade, etc. - I'm talking real, old-school mustard gas chemo). And cure / survival rates are much lower. Only about 20%, if memory serves, are cured, and most people live only 3-4 years with high risk disease.
My wife and I met BrB and his lovely wife as we were in the middle of therapy. They are delightful, warm people and it pains us to know all that BrB has had to go through. On top of it being high-risk, he is also non-secretory, which means his disease does not show up in his blood (M-spike) or his urine (Bence Jones Protein). It is only through PET Scans and bone marrow biopsies that it is revealed.
BrB enjoyed one year of remission after this brutal regimen, and about six months ago it came back. I'll spare the details, but he's been through extremely aggressive chemo, has had to deal with horrible respiratory complications, hospital stays for that where he's contracted opportunistic infections, etc. Throughout this, his lovely wife J has been so supportive and tried to keep his spirits up. BrB, understandably, has had some real challenges but he manages to soldier on with dignity even if his spirit and body is exhausted.
Several days ago, BB demanded to know where some test results were. They hadn't been done. BB went ballistic and the tests were done. And then he saw that there was some residual myeloma. BrB was saddened, obviously, until -- and this is where it gets cool almost like a scene in a movie, BB called the lab.
"How close are we with the killer cells?"
"One week."
"I want BrB to be the first to receive them."
In addition to the existing Total Therapy regiments, BB and his colleagues have been working on killer cells for myeloma. This has been done successfully in leukemia in London, and it has been demonstrated to be highly effective in myeloma-stricken mice at UAMS.
BrB will be put on Pomalidomide (next-gen Revlimid) to keep the myeloma in check until May, when he can get enrolled as the second (there's one other guy, turns out) patient in this trial that has shown tremendous promise.
My thoughts and prayers go out to BrB and J, both for their own individual sakes and as hopefully an example of another important breakthrough driven by BB's steadfast desire to cure this disease.
Monday, April 11, 2011
Bruising like a grape
Just a quick update about one of the side-effects of Revlimid. I banged my hip against my desk a couple of weeks ago and a GNARLY bruise resulted. I mean at its peak this thing was at least six inches in diameter and covered the whole right side of my hip. Yuck. I was going to take a picture of it and post it here but frankly, neither you nor I really want to see that immortalized for future search engines to find! :)
My platelets were around 110. I graphed this at one point for my own edification and should put it up here. On maintenance there is a short cycle where while one is on Revlimid for the 21 days, the platelets decrease, and during the week that one is off it, they creep back up. They might, for example, be at 150 at the start of the month, go down to 110 by the end of the 21 days, and go back up to 150 at the end of the 18 days.
Two further points, though. The first is that they lag a little bit so they seem to continue to go up during the first few days (say the first 7 of the 21) of the month and then continue to go down even when one is no longer taking the Revlimid for a few days.
The second, bigger point is that over time they don't go up by as much as they go down. I would say my baseline has probably dropped from 125 to maybe 110 over the last year. And that is slightly troubling since I'm on this stuff for another 18 months or so and I will be well below 100 on a regular basis, and that's when the gnarly bruising starts.
I asked BB if I could take a week off from the Revlimid to give the marrow a chance to recover and hopefully have that bruise vanish. He agreed, thankfully. So the bruise is starting to get better. But today is my last day off. Blech.
Be well, everyone! I am scheduled to return to Arkansas on the 16th of May but will have updates before then.
My platelets were around 110. I graphed this at one point for my own edification and should put it up here. On maintenance there is a short cycle where while one is on Revlimid for the 21 days, the platelets decrease, and during the week that one is off it, they creep back up. They might, for example, be at 150 at the start of the month, go down to 110 by the end of the 21 days, and go back up to 150 at the end of the 18 days.
Two further points, though. The first is that they lag a little bit so they seem to continue to go up during the first few days (say the first 7 of the 21) of the month and then continue to go down even when one is no longer taking the Revlimid for a few days.
The second, bigger point is that over time they don't go up by as much as they go down. I would say my baseline has probably dropped from 125 to maybe 110 over the last year. And that is slightly troubling since I'm on this stuff for another 18 months or so and I will be well below 100 on a regular basis, and that's when the gnarly bruising starts.
I asked BB if I could take a week off from the Revlimid to give the marrow a chance to recover and hopefully have that bruise vanish. He agreed, thankfully. So the bruise is starting to get better. But today is my last day off. Blech.
Be well, everyone! I am scheduled to return to Arkansas on the 16th of May but will have updates before then.
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