I named this blog the Leukemia Lottery because fighting AML leukemia is like playing the lottery. You are always trying to beat the odds. So far I have been lucky. The odds of being alive today given the type of AML leukemia I had were about 26%. My stem cell transplant was a success and gave me the past 19 months to spend with loved ones and friends. Now I’m fighting a new set of odds in the ITP Lottery.
Dr. C told me on Monday that my bone marrow biopsy from last week came back negative which means no sign of a relapse of leukemia. That means I definitely have immune thrombocytopenic purpura (ITP). Only about 1% of stem cell transplant patients ever develop ITP. Great. I have to be Mr. One Percent. Initially he thought that my ITP was caused by a virus that had similar proteins on its surface to platelets and that’s why my immune system was destroying my platelets faster than I could make them. That would be an easy fix. Just wait for the virus to go away and everything will be fine. Nope. No such luck. Given the time that has gone by and the fact that my platelet count dropped from 18 to 14 over the weekend, it looks like there may be another reason for my ITP.
There are two other theories floating around as to what causes ITP other than a virus. Both are kind of Dark Science to me and hard to understand. One suggests that the new immune system is just too aggressive and immature and has trouble recognizing friend vs foe. Another has something to do with an autoimmune condition that develops and creates antigens specific to the platelet. I don’t have a firm grasp on either theory yet.
Dr. C referred me out for a consult with the Benign Hematology Department at MD Anderson. They see many more cases of ITP than the stem cell department. I saw Dr. K who explained that they are going to watch me for the next 11 days to see if I improve. He was disappointed to see that I did not yet have a positive response to the high-dose steroid and the IVIg but he said we may need to wait a bit longer to see if there is improvement.
If I have not shown some improvement by December 15th, they will pull the trigger on Rituximab, the third line of treatment after prednisone and IVIg. The response rate with Rituximab is about 63%.
If that doesn’t work, they will probably recommend that I have my spleen removed (splenectomy). That sounds exciting. According to one of the doctor’s in the Benign Hematology unit, the spleen is responsible for stripping platelets out of the blood stream and removal of the spleen can prevent the wholesale chewing up of platelets by the body in many cases. The key phrase is “many cases”. Splenectomies work in about 50 to 60% of cases in ITP. Well hell. Those aren’t great odds either.
It’s a hurry up and wait game now. Mary Pat and I have isolated ourselves in an Embassy Suites hotel not far from the medical center. I spend a lot of time walking the Discovery Green park near the Convention Center just to get fresh air and to keep up my strength.
Given that the really high doses of prednisone are tamping down my immune system, I am once again very susceptible to bacterial infections. No more restaurants or crowds of people for the next 6 weeks or so. We have to just wait and watch and hope the count comes back up on its own without having to remove one of my organs. Onward and upwards folks. It’s never boring!