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Mar 8, 2018 Latest post:
Jul 23, 2018
I was diagnosed with CML right after Christmas of 2011. I had no idea what it was or how I had gotten it. I now know more about what it is than anyone should ever have to, but I will never know why or how it happened.
I started off taking Tasigna, a TKI inhibitor that controlled the Philadelphia Chromosome and kept things under control for about 2 years. Then it mutated and the BCR/ABL lab (a lab to identify how many Philadelphia chromosomes are there) showed the mutation as well as a bone marrow biopsy. I have had 5 bone marrow biopsies over the years. So next up was Bosulif, another TKI inhibitor that worked for a few more years until last year, around July, the numbers were skyrocketing again.
This time the mutation was one that there are few options to treat. One, the Ponatinib KTI which has graver side effects than any I have taken so far, Two there was another medication, an injection I would have had to give myself and it would only work for a year at most or three, the Transplant. My HPCC Doctor and I discussed them all and we decided I wanted the transplant. With all of the side effect trouble I had from the first two medications and the possibility for worse ones with the most recent one, I want to try for a cure. That is the ultimate goal.
I was sent to UIHC, where my platelets were over a million, I think they were a million 3 that day. So a transplant was the ultimate goal, but if I didn’t get my symptoms under control then I couldn’t have a transplant. So I started on the Ponatinib. It wasn’t to bad at first , but after about a month, the muscle and joint pain was severe, I kept getting headaches and I was and am so tired all the time that life has gotten very difficult. The last couple of weeks it has been harder for me to catch a full breath and the pain in my muscles, joints and my feet has gotten almost unbearable. But it has worked to get my platelets under control and my transplant has been scheduled.
I go to UIHC on March 19 for all of my pre transplant tests and my transplant is set for April 24.
It is very difficult to type this much on my phone, LOL. So I am going to stop for now. There is so much more to the story, my family, my coworkers, my struggles in the last year. I will pick this up and continue when I can. I will also share my progress once the process has begun.