Dr Patel came in and we had a rather complicated conversation. I think the best strategy for anyone to understand it is to just try to repeat what was said.
My ANC count increased slightly, but only as a reaction to steroids. It will still take 5-7 days to truly begin to grow on its own.
What are the odds for day-28 bone marrow progress? Generally speaking, the odds are 80-90% that I will be in remission. However, even if I am in complete remission, it doesn't change the fact that I have aggressive leukemia. If I was in complete remission and they didn't transplant and just continued to give me chemo, the odds that it would return are 70-80%. Dr Patel said she expects the leukemia, or most of it, to be gone on day 28. But if it's gone or still there it's not going to change the fact we move quickly to transplant. Most people go for three or four chemo cycles as they line up a donor and get to transplant. But for me the faster we get to transplant the better. This will take two-three months and in the interim Dr Patel will try to hold me over with chemo.
Odds of success? Dr Patel said when they do those kinds of calculations, they are based on standard risk Acute Lymphoblastic Leukemia (ALL) cases, but I am consider high risk ALL. Even if the bone marrow shows even a little leukemia, it's not going to change the fact that we are going to transplant. We know from the get go this is an aggressive form of ALL and is high risk. If get you into a good remission, we're going to transplant. Whether day-28 results show high risk or low risk, we are going to transplant, because the fact that you have high risk leukemia trumps all the other markers we're looking at.
The second question is what state is my disease in when we go to transplant. The best way to go into transplant is with absolutely no leukemia. The cut-off Dr Patel uses is 0.2%. So if she sees 0.2% or more that's too much leukemia and the transplant will not work. At this point, Dr Patel would have to go back to the drawing board and devise a new chemo regiment to get me into remission. If it is less than 0.2%, they think that tiny little bit of leukemia can be overcome by a transplant. There are two things that can happen. At the time of transplant she will do a bone marrow biopsy. If I don't have any detectable leukemia, or it's less than 0.2%, we proceed to transplant.
If it greater than 0.2%, she stops and I begin chemo again. When we stop and restart chemo, the odds of reaching remission drop from 80-90% down to 30-40%. And if the chemo still doesn't work, the odds drop even more. Dr Patel has patients who saw one or two additional rounds of chemo put them into remission, and she has patients she was never able to get into remission and never received a transplant. This last group had about a 50% survival rate of one year. Some had 60% leukemia and died soon. Others scored just above the 0.2% and lived much longer, before the leukemia took over the body. My best chance for a transplant to work is the original attempt. Patients who have a second transplant see rate of survival drop to 10-20%.
Dr Patel said that with leukemia, the goal is to play your strongest card up front. If the bone marrow biopsy is negative after transplant, it is called a remission and a cure after five years. Just because I get a transplant and go into remission, that doesn't mean I'm out of the woods. They do routine biopsy at 30 days, six months and a year, and annually after that. Apparently, the transplant is dealing with both my lymphoma and my leukemia. I was told lymphoma was incurable, partly because it grew so slowly, but Dr Patel said the transplant is a curative option for lymphoma. If the transplant works, it cures both diseases. I have one biological brother, who is a 1:4 chance of matching as a donor. How do we get him tested? On Monday Dr Patel's assistant will mail Don a kit, which he can take to his doctor. Don will mail the blood test tube back. They have already done my HLA testing.
I was a bit mistaken about getting four days of chemo this week. I received chemo yesterday and will now have three days of steroids from IV bags. Also, my weight went up a little from 173.4 to 174.6.
No comments:
Post a Comment