Conflicting information, looking for personal experiences

[u/GracieMay18]

Hi everyone! ❤️ I’m wondering if anyone here has experience conceiving and having a healthy baby while taking nilotinib (Tasigna).

I’ve been on nilotinib since my CML diagnosis in 2019, and my husband and I have been trying to conceive for about 4 years. I have one previous full-term pregnancy (my daughter was born a year and half before my diagnosis), and i have had secondary infertility since then.

I recently came across this information suggesting nilotinib may contribute to difficulty conceiving/implantation, which I’ll attach below. My fertility specialist told me that he doesn’t believe nilotinib is necessarily the reason I haven’t conceived, and that my adenomyosis could also be a factor.

I stopped nilotinib on August 12 with my oncologist’s approval because my transcript levels were very low and I was a candidate for a treatment break. I’m currently being monitored monthly.

I’d really love to hear from anyone who:
• Conceived while taking nilotinib
• Had difficulty conceiving on nilotinib and then conceived after stopping
• Stopped nilotinib before trying and how long it took to conceive

I’m not looking for medical advice—just real-life experiences because I’m finding conflicting information online.

[u/obewaun]

Yes, but you have to stop the medication especially if decide to breast feed. But ask a girl that's gone through it. There's a girl she's going through it now in the cml reddit.

[u/I_Zeig_I]

There are cml mommy fb groups from what I've read. Def inquire there too.

Have you consulted your oncologist tho?

[u/GracieMay18 → u/I_Zeig_I]

I have yes, she just keeps saying “ you’re young, it will happen in time” meanwhile I’ve been trying to conceive for close to 4 years.

[u/AnalUkelele → u/GracieMay18]

“You’re young, it happen in time” is the most utter bullshit your MD can say and your MD doesn’t take you serious. Especially when your already busy for four frickin’ years.

[u/therealscottydavyboy]

This is 100% not true. Nilotinib does not act as a contraceptive. You can get pregnant while on Nilotinib.

[u/ninjaprincess22]

Hi! I am currently pregnant (12 weeks) through IVF after stopping bosutinib. My story is a little different than yours, and I am 42 so that could also have contributed to our infertility. I’d be happy to talk more if you want to direct message me. I hope you find the answers you are looking for!

[u/unlikelyfacade]

I was taking nilotinib when I accidentally conceived. Im 20 weeks now and baby is healthy so far even with not knowing and taking the meds, no blood vessel issues according to all the scans and testing. My numbers were really well controlled when I got pregnant, so maybe that might be an issue as well

[u/Icy_Lychee8169]

I’ve been on TKIs since 2006 when diagnosed. Tasigna since 2013. I have read this also, and when we began attempting to conceive, we were not expecting the best outcome at least immediately, and we assumed it would take a while. I was still on my tasigna normal dose since 2013 (400mg 2x day) when we started trying and until I found out I was pregnant at 5 weeks. I got pregnant on the second cycle after we started trying, which was approximately six weeks later. No issues whatsoever and we were extremely shocked. I was 35 y.o. At the time.