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Conceiving on Glivec

Hi All,

I was dx'ed back in early 2009 and finally after a steady decline, I've git the magic 0.1% BCR/ABl. My wife and I are now thinking of starting a family and I was wondering if anyone here had any success stories to share, any experience of conceiving while still taking Glivec, or any suggestions (apart from the obvious wink).

Thanks

Rob

Dx'd back in 2006, initially the doctors advice was not to try for more children, this advice changed a couple of years later so we started trying for child #2

And after a little while we had a healthy baby boy who is now just over 1 and cuasing us lots of trouble (in a nice way)

2 months after his arrival i was swicthed to dasatanib due to a mutation and the doctors advice was again to not try for more children.  But to be honest 2 boys are enough for us.

2 healthy boys

So due to everything the wife calls him our miracle boy, although sometimes the word monster is used ;)

The advice for both imatanib and dasatanib for men was really around the fact that there was not enough data for them to be able to say if men on the drugs should or should not father children.  But  I suspect in imatanibs case the fact it has been around longer means that enough little mistakes have been made an dthere is enough evidence to suggest that there are no problems.

Not sure if there is any specific advice for concieving other that the standard ones if you didn't have CML.

Rob

 

 Hi Rob,

We had a similar sort of experience. Diagnosed Nov 2007 and have been on Imatinib 400 and 600 (for the last year/18 months). Fertility issues were one of the things that were important to me and my wife at the time of diagnosis and during the early years.

We've now got 2 healthy children conceived naturally (boy of 2 years and a girl of 5 weeks). I'm being treated at Hammersmith and consultants there indicated they were happy for us to try for children. From my own reading, it implied that the exposure to the hydroxyurea which I took in the first few weeks had more potential to cause problems than the Imatinib. My consultant arranged for me to have an apppointment with the fertility doc at Hammersmith who indicated he knew of no problems with Imatinib where the father was taking it. He did say there was a risk fathering a child on any medication, and that as there was little/no data specifically on Imatinib, in his opinion this was unquantifiably small.

Obviously if there was a recognised medical risk, then we wouldn't have taken the "chance" as it were and had to deal with it. We also didn't want to look back in years to come and wonder "what if". People are taking all sorts of medication and the interactions are not that well understood so doctors cannot say 100% it doesn't affect. I'm certainly not saying be all "gun-ho" about it, but you have to weigh-up all the (little) data and make your own choices.

What does your consultant say? Perhaps they could arrange you to chat with the fertility dept. at your hospital (or even at Hammersmith?) so you can gather more opinion/data?

Am happy to chat more on our experiences if you want to drop your email address out.

Best wishes!

Thanks guys for the posts, its always nice to hear other people have been through the same.

I spoke with my consultant about this the last time I saw him and he towed the classic doctor line of "I can't advise you to conceive on Glivec" but then went on to say "telling you to come off of glivec would be completely the wrong advice".  A touch confusing but I have a good relationship with him and I got the jist of what he was trying to say.  

I too had a bout of hydroxyurea but I put some of my boys on ice just in case it did do any damage.  Hopefully we won't have to resort to that.

Strange really, out of every person I've spoken to about this including my consultant, specialit nurse, and a few fellow patients, no one has had any nightmare stories to tell.  I was half expecting to hear things like several miscarriages, couldn't conceive for years, etc... but the only common outcome seems to be plenty of healthy children.  

This all fills me with hope, I can't wait to try and add to the collection of Glivec babies.

Thanks again

Rob