My boyfriend has CML he has been on Sprycel. We have sense had what would be considered chemical pregnancies early losses before 6 weeks. We had one in Feb and now one this week. I have researched and read and called the leukemia lymphoma site but almost all the info is on the gleevec which seems to say it does not affect the mans fertility, but the sprycel does not have enough research and so most of what I read says should not conceive?? I'm at a loss, he has talked about stopping the meds for awhile, but wanted to hear anyone's knowledge or experience with this.. thanks in advance
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Hi, There is an old thread about this subject here . The UK authorities on this subject are Prof Jane Apperley's team at the Hammersmith Hospital. David who is on here regularly is more up to date than I am on this subject, but is pretty busy right nowas his wife had twins last year! I'm sure he or someone will be able to advise better, but I hope this is a helpful start.
It turns out that with imatinib, being pregnant as a female CML patient is not a good thing. In some circumstances it can be managed, but it's complicated. For the men, it was hard to understand - it's not like someone sets up a study on these matters, so for a long time things were based upon collective experience of doctors in clinics. And as that data was amassed it seemed to show that while there were birth abnormalities for babies who were fathered by men on imatinib it was pretty much in line with the general population.
But I, like your boyfriend, was not on imatinib. I was on stronger 2nd generation drugs - dasatinib in my case. There wan't enough data to support any decision, really.
I am fortunate in that in my role leading this forum, and attending CML conferences I get to talk to vastly experienced clinicians. So I asked Jane Apperley from Hammersmith Hospital about it. Jane knows more than anyone else about fertility and CML. I have sperm in the freezer, so all options were open. I remember her words well, in a conference room in Slovenia and they were "just go for it the old fashioned way".
So we did.
And we ended up with twins. Identical girls, Leia and Zoe.
I think it's fairly well known on this forum that my twins had some serious issues through that pregnancy. They barely made it out alive - and I'm really not joking when I say that. However I would like to reassure you that those issues were due to them being monochorionic (identical) twins, and nothing else. Taking TKIs doesn't increase your risk or twins - it was just luck (good or bad, depending on your point of view!). I never knew that identical twins were just incredibly risky and full of problems. But 99 times out of 100 it would have been a normal pregnancy and dasatinib had absolutely no bearing on it.
So all I can do is parrot Jane's advice. She says fathering a chid on dasatinib is fine - as fine as any other pregnancy is going to be, and none of them are without risk.