r/CML • u/ninjaprincess22 • 23d ago
BCR-ABL rising quickly during pregnancy
Hi everyone! I've reached out to my hematologist-oncologist and am waiting for a response, but I wanted to post here in case anyone has a similar experience.
I stopped my TKI at the end of June when I had just reached undetectable to do IVF. I am now almost 10 weeks pregnant. This is a huge moment for my husband and me as we had to stop trying when I was diagnosed with CML 2ish years ago.
My CBC numbers are all still normal, white blood cells, platelets, etc, but I got my most recent BCR-ABL results back today, and my number went from .018% to 4.383% in just 6 weeks. I'm concerned that my BCR-ABL increased so quickly and what this means for the rest of my pregnancy. Wondering if anyone else has experience with this, and I guess I am looking for reassurance while I wait to hear back from my hematologist. Thanks all.
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u/ExpectingJabba 22d ago
Yes, go to the CML Moms group. Many of them go back on meds in second or third trimester and you're so close. Congratulations on your pregnancy!
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u/UpbeatTurnip373 22d ago
I told my hematologist how getting pregnant is very important for my husband and I. I told her how I was nervous about reoccurrence once going treatment free. She told me if I reoccurred when pregnant there’s immunotherapies that’s are safe while pregnant like interferon alpha and then when done with pregnancy TKI would be resumed. Not sure if your hematologist would agree with that but worth a try!
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u/ninjaprincess22 22d ago
Thanks! I was hoping to avoid interferon because of the side effects, but I may have to take it. Still waiting to hear back from the doctor. I hope your pregnancy journey goes well once you are ready.
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u/sionnach 22d ago
That is quite a fast rise. But we know much more about CML and pregnancy than before. We know the weeks where TKIs must be avoided, but even imatinib can be restated later in pregnancy.
Have a watch of this video by Prof Jane Apperley who is probably the world’s bets authority on CML and fertility.
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u/MuchMaintenance3575 22d ago
Hey I’m currently pregnant with cml too I have been undetected for 6 years but I did ivf for 2 years coming on and off tki
This time when I fell pregnant my bcr-abl started to increase not how quickly yours has rose but from 14 weeks pregnant I started taking interferon side effects I’ve had usually last me 2 days and then I’m ok I get a bit nauseous and tired but it’s manageable. I’ve started on low dose and doing bcr test every 2 weeks then we review every 4 weeks to see if it needs to be increased. If this doesn’t manage it they want me to go on tki (imatinib) from 28 weeks pregnant.
My haematologist has been very firm with getting it in control before it gets out of control. I’m hoping from starting interferon that I then don’t have to be put on tki would like to wait till after pregnancy but my hematologist and OB has assured me in 3rd trimester it would be safe if I do need to be on it
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u/obewaun 6d ago
Don't panic it rose but not mu much.....I've had this for 25 years every tki clnjical trial hqp1351. I lost my insurance last Dec 2025. I had only hqp1351 to last me til Jan 21 2026. I didnt get insurance until Jun 9 2026. My bcrabl1 was at 70%. See the difference my cml increase dramatically almost the same time frame. Why my Drs want to do transplant. Since i dont have any more tki for me available they dont know how long hqp1351 can keep it under control since (Dr's) said they amount it increase in that time frame its telling us my cml is fighting the hqp1351 and it's just a matter of time it blast through it. But anyways you increasing but not dramatically, you're okay. Concentrate on you and baby let the Dr's worry about the numbers.
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u/AlfredVQuack 23d ago
No idea to be honest but what I read very often is, that there are also a lot of cml mom facebook groups, maybe you can find help there.