So happy to bump into this forum here! I got diagnosed with CML in July this year.
After the first shock I read a lot of stuff to calm myself and now I have somewhat accepted this long journey on which I must go.
Been searching for some more info but couldn’t find a lot, but it is really awesome that such a good forum does exist here!
I was kind of oké with all of this (just relieved that it was ‘just’ CML) and I now know it is a disease (or rather ‘condition’) with very good prognosis. Also, most of the time I don’t have time to think about any of this, because I have 3 young children to raise;)
However, just got my 3 months results back which are a bit disappointing. So I have a few questions which I would like to ask here if possible.
When diagnosed I had a WBC of 247 (which climbed to 268 the day after). Platelets 667. And a (very) large spleen. Diagnose was chronic phase and I was put on (generic) Imatinib 400mg right away.
One month later I reached (almost) CHR: WBC 9,6; Plt 385. I now know that CHR is the least difficult hurdle to take...
My 3 months-mark results:
BCR-abl is at 72,9%
WBC 9,8. Plt 316, and (definite) CHR ‘cause all the small other white cells are at zero or almost zero. Only basophils at 0.29 which should be zero.
So NOT the results I was hoping for of course. My hematologist will now test me for levels of imatinib because she suspects I might not absorb it well enough (of course I have not missed a single dose). Second, she will test for mutations although she doesn’t think it likely will be any mutation because then the Imatinib wouldn’t give such good results blood-wise.
- I read here somewhere that young people (30’s-40’s) tend to not react to Imatinib as well as others. Do any of you know if there is any literature on that topic? I couldn’t find it so far. As I’m 40 yrs old this could be a cause for my bad numbers maybe?
- It seems that a lot of members here started on Dasatinib right away if I’m right? Was there any specific reason for that? In my case, I’m in the Netherlands, there was almost no other option than to start with Imatinib as the doctors stated that the other TKI’s have a lot of side-effects and if I would start directly on a 2nd gen TKI, there’d be no way back.
- I’ve read some articles which imply that when started directly on Dasatinib, chances for a deeper response are higher and especially the chance to stop somewhere in the future is higher. (Although I learned from reading here that the chance to lower my dose would be much higher and more preferable than to actually quit altogether). My hematologists keeps saying that although 2nd gen TKI does give faster results, in the long run it doesn’t really matter (this was what she said at diagnosis, presuming I would respond well to Imatinib).
- I’m not keen on switching because I have almost no side-effects on Imatinib (besides fatigue, but that’s inherent I guess). But of course will do if necessary for better response.
- Is it also possible that i’m just a little bit slower in responding because I had such high wbc’s at start (also suggested by my hematologist)?
I would be very grateful for any advice/tips/whatsoever on why my results are so bad after 3 months or any similar experience maybe. I’m starting to panic a bit more now...:(
Ps Apologies for this long post...