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Nervous about TFR

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Hi everyone,

Today was my last dose of dasatinib and I’ll be attempting TFR to try to get pregnant. I’m 33 years old and was diagnosed at 29. Here are my numbers:

1/2019 104% -> started on 100mg dasatinib
2/2019 18.11%
4/2019 0.0996%
7/2019 0.0189%
10/2019 0.0099%
2/2020 0.0024% decreased to 70mg dasatinib
6/2020 undetectable (test performed at different lab due to pandemic-my hematologist thinks it’s a less sensitive lab and would have been detectable in low amounts at the normal lab)
1/2021 0.0024%
7/2021 0.0021%
1/2022 undetectable

My hematologist was very hesitant to decrease my dasatinib dose, both from 100 to 70 and did not want to decrease it from 70-50 when I was undetectable in January, so I’m still on 70, but he has no reservations about stopping now. My husband and I are at a point where we’re ready to have kids but obviously I’m nervous about failing. 

Has anyone stopped their TKIs when their dose was 70mg or after only 3 years? Or does anyone have any words of encouragement?

Thanks in advance. 

I can't offer much practical support - I'm male and on imatinib so no relevant experience.

Just wanted to say good luck, and you can certainly be confident that if your CML counts start going up, they will respond when you are able to go back on the meds.

 

Best wishes

I know a CML patient personally who was in your situation and she was on 50 mg dasatinib and near undetectable. She stopped therapy and became pregnant (with twins!). Within a few months her CML tests started to rise, but she stayed the course. At six months, her CML crossed over 1% PCR and by the time her babies were due, her PCR was above 20% and she had detectable CML cells (FISH). During this time, her blast cell count remained near zero and that is key. CML is a very slow disease when in chronic phase. It can take years before symptoms are felt. Having reduced your CML burden to near undetectable it can take a year or more for the disease to re-emerge while PCR climbs. This is what buys you time during pregnancy. Only blast cells drive CML into acceleration. One way to minimize that from happening is to make sure your vitamin D blood level is above 55 ng/ml (ideal = 70-90 ng/ml). Vitamin D is needed by blast cells to rapidly differentiate - even leukemic ones. As long as your blast cells are near zero or a few percent, you will likely be able to carry a pregnancy to term easily and then resume therapy afterwards (if needed!). Get a vitamin D blood test and know your level and supplement accordingly.

There is a fair chance, once you stop dasatinib, you will remain undetected (i.e. PCR < 0.01%). Your pregnancy will be a test.

Who knows, you might end up with twins! and not have to resume therapy.

(p.s. When my friend resumed therapy after her twins were born, she quickly regained MMR status within a few months. She is now undetected. And her twins do what twins do)

Hi Kerri,

Wishing you all the best! I am in the same boat except I will be coming off Dasatinib after 2 years, so I won’t have reached undetectable status yet. I am 40 this year so it’s a timing issue for me but my doctor has consulted with experts who have approved it and have suggested me taking interferon once a week whilst pregnant (assuming I’m lucky enough to get there). I have frozen embryos that I stored before starting treating which I’ll be using via IVF to try and reduce the time waiting to get pregnant. Either way, just wanted to say you’re not alone and I’m so pleased to hear your doctor is supporting you going on this journey. Scuba’s comments also mirror what my doctor has said so as long as you’re monitoring things you should do well. 

My only advice is if things do take a while or you need to consider going back on treatment, freezing embryos has really added some extra comfort for me and bought me some time to coordinate between treatment and life! Also, I am sure they’ve told you this, but apparently an interferon shot once a week is the common treatment if your bloods start going up but it takes a few months to start working and is no where near as effective as Dasatinib, so they suggested I start preemptively a few months into pregnancy. Then again I am coming off treatment earlier than you, and it sounds like you’re in a really good spot so it may not be the same for you.

Good luck and I’m sure it will all work out great! Let us know how you go :)