Hi everyone,
by the way of introduction, I am a CML patient diagnosed 6 years ago in acceleration phase. I was on imatinib for a year and while on it the disease progressed to blast crysis. I underwent intensive chemotherapy with multiple drugs and had a bone marrow transplantation 4 years ago (not stem cell). After the BMT I was on dasatinib, but after serious gastric bleeding I was switched to nilotinib and Im on it ever since. I have no detectable faulty gene transcripts since transplantation, so maybe I can say that Im cured :) Im not sure, doctors dont make guarantees, too :)
There are two things I want to know, and Im positive that this large community of brave survivors can provide a lot of information!
First one: are there any studies where patients stopped taking nilotinib, or other TKI, in a controlled maner and monitored by the doctors? Doctor who transplanted me wanted to try this with me, but the other one with whom my disease has progressed was strictly against it since I am his risky patient. I am taking Tasigna as a percaution, thats how I understand it and I should be on a life long therapy. I would really like to quit, to avoid mild alopecia, mild joint pain, mild raynaud syndrome effects and blood-vessel-constricting effects nilotinib is known for. But I dont want to lose my "response" doing that. No one can guarantee that graft-versus-leukaemia effect has done its job 100%, and PCR analyse only small volume of blood, not entire body (no one will give guarantees that all of my blood is clean, but it is a possibility after BMT). 2 years ago my doctors said there is not enough data to suppoort its safe to stop. Do you know any info if there are some people who stopped therapy after transplantation?
Second one: even on imatinib I noticed significantly reduced volume of ejaculate. So Im not buying the statements that TKIs do not affect spermatogenesis.I experienced it very well. After transplantation I was sterile and the doctors told me that after such intensive chemo I shouldnt expect to become fertile ever again. Four years after my BMT I have viable sperms (20m per ml, and 30m is minimum for a natural fertilization) and I hope I can be a father soon. If not naturally then AI is an option. I froze my semen sample in the middle of the chemo-cycle before transplantation, because doctor did not tell me I should do this before the chemo cycles. He just forgot. If I do an AI, do you think is better that I use "old" semen sample, or "new" while Im on nilotinib? I read here that data for imatinib are probably also valid for nilotinib and it suggests that its safe for a man to father a child while on treatment. Should I maybe quit therapy for some days if I try naturally?
I am sorry for a lenghty post, but this my first one here. These are the two questions that bother me so much, and I cant find any definitive answers.
I would really appreciate your expert input and experience based opinion.
Yowandbm