Thank you all for providing a forum. I noticed the kindness of people and the openness of discussions.
I was diagnosed with CML in 2012. At that time my BCR/ABL1 was over 90% and my WBC was 211. For me, Gleevec was a miracle for a year and then I started bleeding internally, having regular transfusions, and then a Magnesium level of 0.5 (viewed as incompatible with human life). I stopped meds for three months and then switched to Tasigna for five years until it attacked my internal organs. I then switched to Sprycel. Concurrently, I was hospitalized with pneumonia just a few months after starting Sprycel and then was diagnosed with congestive heart failure. I lived with the heart failure diagnosis for almost three years, until I learned that Sprycel was the culprit and what I had was Pulmonary Hypertension. I again stopped meds, this time for almost 5 months. The great story is that within a few weeks of stopping Sprycel, my right ventricle had healed -- three years of damage was reversed in three weeks. I started Bosulif in August but had to quit in September because it was attacking my internal organs, just as Tasigna had, but Tasigna did give me almost five years of good numbers. I started on Scembliz three weeks ago. To my shock, my BCR.ABL1 was 100% 10 days after starting the new med. Oddly my WBC was only 28. I will retest again in January -- 10 days is an unfair test. By the way, in general, I have felt great most of the last 11 years, except when I had pulmonary hypertension. I have even been hiking in the Smokies as of late -- not bad for an 80-year-old.
With that long history as background, I have two questions for others on this forum.
(1) Have any of you ever experienced a 100% BCR/ABL1 and, if so, how many months did it take to get down to 10%, etc.?
(2) Have any of you cycled back to a failed medicine because the side effects were less than what you experienced later? I am hoping to not consider that alternative but Gleeve was the most effective med I have taken at controlling the CML and I might not experience internal bleeding on a subsequent try.
Sorry to start with the War and Peace version but I'm a garrulous Irishman. Any feedback about my two questions is appreciated. Note that I am fine with my history and love my oncologist, but I am just running out of medication options.
