I have not posted in a while put I am not doing very well with all of this. An update on my situation. I was diagnosed in April 2014 at City of Hope. At the time of diagnosis I had a PCR of 145% and 2% blasts. I have had suboptimal responses to both Tasigna (PCR dropped to 19% and then rose); and Sprycel (stopped because PCR was 44% and rising). I have been on ponatinib since December starting off at 15mg. PCR indicated a decrease to 9%, but then it rose to 12%. Dosage was increased to 30 mg and PCR dropped to 4.5% and then rose again to 5.5%. Dosage was then increased to 45 mg. Latest PCR is 2.9% with FISH showing 4%. Numerous mutation tests reveal no mutations. I have never missed a dose of medication either.
I am now transfusion dependent with an average of 2-3 platelet transfusions a week, blood every other week along with neupogen shots 2x weekly. I am transfused when platelets are below 15,000 and hemoglobin is below 8.0. I get neupogen when WBCs are 2.5 or lower. I have my blood tested Mondays, Wednesday, and Fridays. My doctor is concerned with the number of transfusions I am having (so many I have lost count!) because you can develop antibodies which are a serious complication especially if I need a bone marrow transplant in the future. Last Friday dr. did not want to transfuse me even though I was at 15,000 to see if I could hold out until Monday in an attempt to try to see if he could avoid a transfusion. Well, 24 hours later on Sunday I ended up in the ETC with platelets at 6,000; so low I had to have a CT scan to make sure that I did not have a brain bleed. My hemoglobin was 7.5 which explains why I felt like crap and it was an effort just to climb stairs.
City of Hope is pursuing possible bone marrow transplant donors as my only brother is a half match. But guess what??? I apparently have rare DNA and there are only 2 potential matches for me from worldwide databases. Those two individuals are being contacted for additional testing. The plan is to leave me on Iclusig (ponatinib) for another month (it is leaving my skin looking like a snake or wrinkled elephant its so dry) and then go to bosutinib. If that doesn't work dr. said I should strongly consider having a transplant. There is little in the literature on the internet that I can find regarding what to do with patients who do not respond optimally to multiple tkis. I know my case has been discussed with various drs at City of Hope in terms of treatment options.
I am frustrated, mad, and just plan worn out with all of this. Hard to be positive with such an unknown future not to mention the constant blood tests and transfusions I have to endure along with a possible bone marrow transplant looming off in the distance. Just wanted to vent - CML sucks.
