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).
Sunday, August 29, 2010
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.
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