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Stopping nilotinib treatment, fathering on nilotinib

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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

I thought this community is here to help, please respond.

I need your opinion!

I think people might struggle to respond as your circumstances are quite specific and outside the experience of many of the forum regulars.

I have no idea of the impact the BMT has had on your fertility. However, having been on nilotinib continuously for 10 years this year and having two healthy young daughters (age 2 & 3), there was no reason for me to stop nilotinib.

We had to go through IVF for child #1, (wife, not me) and the Dr commented my sperm counts were excellent and of a quality better than many donors. So, in my personal experience, my sperm quality has not been impacted by nilotinib.

The advice to not stop nilotinib was given to me by prof Jane Apperley and fully supported by my own CML doc.

I hope that helps.

Chris

Wow.  Glad to hear that your transplant seems to have gone very well.  I would tend to agree with the second doctor since you were in blast crisis (truly amazing result).  You mention that your symptoms are all mild on Nilotinib so maybe getting on the lowest possible dose is an option for you if you are not already on the lowest dose.  

As far as the second question I think the previous response pretty much sums it up.  

Thanks for sharing.

Thank you for your response!

I get that my case is rare, but I thought that there are others on this forum since the community is large.

I'm glad you founded your family, I hope I'll get there soon, one way or the other. My spouse and will be 34 soon, the clock is ticking.

There are ongoing studies with patients who stopped treatment, but they are still in infancy. I hope we will get some data soon.

Hello, thank you for your opinion!

I will move to Ireland soon and will see what the new doctor will say on stopping medication.

Yes, I was lucky to survive thanks to the doctors in Frankfurt University Clinic. I do not have any GvHD, too.

Wishing you best :)

Suggest you watch this presentation by Prof Clarke at the CMLSG patient day 2019. Most up to date info on options for stopping treatment. His previous papers convinced me to follow the Destiny Trial protocol after 11 years on imatinib. I started half dose in Oct 2017, stopped taking the pills in Oct 2018 and (subject to PCR due shortly) in TFR 18 months later.  

Hello cdm5000, please share your dose details.

I'm currently on 150mg twice per day.

When my first child was conceived I was on 300mg twice per day.

I reduced my dose in half due to very low and stable PCR results - maintained a MMR4+ on 1/2 dose since Feb 2017. This is in line with the Destiny trial evidence (obviously in consultation with my doc).

The dose reduction was not for fertility reasons; that was merely a coincidence.

I listened to the presentation, it is a valuable resource for patients.

Once more I see that my case is too specific as no patients as myself were selected for any of the studies.

I concluded that it might be too risky for me to go take the "no med" route, at least for couple more years.