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Anyone with perspective on planning a pregnancy on dasatinib?

Hi, I'm a 25yo female, diagnosed four years ago in complete molecular remission for close to three years on Sprycel (dasatinib). I've been considering approaching my doctor about creating a pregnancy plan. I have a child already, but the hardest part of learning about my CML was the doctor so harshly RIPPING away my hopes of ever having children again. He told me to never get pregnant, because if I did he couldn't save my baby. But I am still young, and there is precedence now for successful pregnancies. I've researched until my eyes hurt, read the protocol documents, case studies, but most of the studies are of patients on gleevec, imanitib, or other treatments. Does anyone have any information for me about planning a pregnancy on DASATINIB? Is it even possible? Did your doctor make an attempt to support your desires, or completely shut you down like mine did? I will admit to being very bitter about it, but I can't help it. I feel as if I'm mourning the loss of my children, and i cant move past it.

Hi.

It's late tonight so I can't send you the details of what I'd like to tell you, but I will tomorrow.

Long story short, with a patient that is in a good place (and with 4 yrs MMR you are) there are loads of options. Almost all of them, depending on your exact CML situation, result in a pregnancy that is as successful as any other. That doesn't mean it's easy because CML does bring complications - you may need to drop dasatinib for a while, take interferon while pregnant. That's not easy, but if your CML response is good it's doable.

It really depends on your PCR as the main risk factor.

The real problem with expectant mothers on dasatinib is when they are not in MMR, or accidentally fall pregnant when well above MMR. You are in MMR - so that's great news.

Do you know your recent PCR results on the International Scale? That is the most important thing for us to know. But from what you have told me, your doctor is perhaps being over cautious - but then again, maybe they know something we don't yet know.

PS. Do you mind me asking where you live? Different countries have different treatment routines.

David.

I live I the USA and I'm not currently aware of my most recent PCR. I have read that some women were treated with interferon or leukapheresis, but that it didn't control their CML and they sometimes had recurrence. I know that in my case, I did not respond to initial treatment with hydroxyurea, and was rather quickly started on Sprycel to get my levels under control. I never even got the chance to look into banking eggs for potential surrogacy. At this point with the effects that I've read Sprycel can have on female fertility, I'm worried I may not even be able to HAVE a baby if I tried. =(

Hi again,

It's important to know your latest PCR result. Could you find out from your hospital? I'd have thought it should be in your most recent clinic notes.

Since you have been taking dasatinib for 4 years, and say you are in complete molecular remission it's means that your PCR result must be very low, or perhaps undetectable.

Since that is a good place to start, Interferon would definitely be a treatment option whilst you are pregnant. It is a well established treatment plan to take interferon to maintain a low PCR during pregnancy and breastfeeding, then returning to take your TKI (dasatinib) after that point. During this time, you would have more frequent molecular monitoring via PCR to ensure the CML is in check.

Interferon ought to keep you in molecular remission - and will not harm your baby. You may be able to take pegylated interferon has fewer side effects.

Your doctor should not be point-blank saying you should not have children unless there is some detail that we're not aware of that's important. That may have been the advice 10 years ago, but it is not now - and not to a patient who is in CMR. 

I would suggest seeking a second opinion if your doctor is not open to the conversation of how they can help you manage a pregnancy. On the face of it, you see like the kind of CML patient who is in a good place to become a mother. Sometimes a patient who is quite recently diagnosed becomes pregnant, and that is when things are particularly tricky. But 4 years in and in CMR is a great place to start.

David.