I'm just curious of others experiences in taking time to get to complete molecular response. In all the information they gave me two years ago (age 35), it seemed like I should be in CMR by at most of a year and a half. My doctor did say I came in with a lot of disease when I started as it seemed imatinib (400mg) did nothing for the first three months. My white cell count at diagnosis was 400ish. Unfortunately, I haven't had full access to my blood records until recently so I was never fully sure of my BCR-ABL results.
Over the next several appointments with my oncologist he had been going back and forth with keeping me on imatinib or taking me off. It was around the one year mark I had come under 1% he told me (0.9%, he later told me). It seemed over the past 9 months, I'd average 1.5% decrease in my BCR-ABL tests every 3 months. Then we had my next test around October of last year and I had only gone down by 0.1% (I was given results in November), like the imatinib had just stopped working suddenly.
I was then switched to Dasatinib (140mg), started end of December. My next blood work was in January and followed up with my oncologist in February. It seemed after two months of remaining on imatinib and one month of Dasatinib he told me I was down another 0.3% (Assuming, this should have me around 0.5% on my BCR-ABL test by this point). He was happy with that, but here is where things get tricky to me...
I had to get of my esomeprezole (40mg) because you're not supposed to mix PPIs with Dasatinib, well my heart burn was so bad, I was having trouble swallowing my pills... my oncologist worked with the pharmacy and found a study from Japan that showed that 16 patients went into remission just fine while on PPIs, not much else for information, just a conclusion with not a very large test pool. We put me back on a PPI at half the dosage (20mg) and I was to manage my heartburn and now I can swallow better again. Come my next appointment, and now that I can see my blood results, I was only down to 0.28% on my BCR-ABL test, which from what I can tell is that after three months of Dasatinib and PPI, I only came down 0.2%, this was frustrating to me as I was expecting to be near or at CMR, now I haven't been able to really compare my old results, since I could never get them before. My Oncologist was okay with the results and said we should be there soon. He said he doesn't believe the PPI is affecting my dasatinib too much, but seems like there is something wrong here.
Its been almost two years now and will be two years by my next appointment. I decided to take it upon myself to now also further remove my PPI, by only taking my 20mg every other day, and that seems to be going okay and is manageable heartburn wise. Guess I'll see my next results in another 2 months.
Anyone else been seeming to have the process of just this dragging on, is this normal? Or does it seem like it was because I came in with so much disease, as I was told.