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).

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.