Partly this is in reponse to the question from Pin on the "Any active Runners on Gleevec?" thread and partly it's time to start my own tread and stop hijacking.
The question was "I read in a previous post that you did some IVF cycles before treatment - have the doctors told you what your options might be in having children in the future?
The reason I ask is that I'm 29 and really wanted to have children but I have already started my treatment and no one is really giving me any answers about this "
At 29 you still have time on your side so the urgency that I have is not a problem for you - I started Gleevec the day after my 38th birthday and my husband is 42. The IVF cycles were purely to preserve younger embryos because they worry that I might not be in a position to try for a pregnancy until we are "old and crusty".
Initially they told me to stop worrying about a pregnancy and focus on treatment - yeah right - but with a good response (2.2 log at 3 months) they seem more positive about it happening but certainly not yet. I know my fertility specialist wrote to my hem asking for treatment targets before starting trying for a pregnancy but I haven't got her response yet - appt on 12th July. Probably we need a good enough response to sustain almost a year without TKIs. I think it is basically the same as all the trials looking at stopping the TKIs - if you are PCRU for a long time even if the leukemia comes back it takes a while and seems to respond to going back on the TKI. At 29 you have time here to build a good strong response - I have less time. There has been some discussion that Glivec seems to cause problems mainly in the first trimester (associated with developmental deformations) so there might be an argument for using it later in a pregnancy - we would want to avoid this but it would be scary to be faced with a rising leukemic load with no TKI. They are also talking about the possibility of using interferon. As you can see there is not a firm plan in place yet.
The other thing is the method of getting pregnant. In Australia IVF is not cheap but it is affordable for us. I didn't respond well to the initial IVF but in addition to the CML dx my father was dying and we got married so it is reasonable to assume my body was stressed. I was also a bit skinny. My fertility spec said that she would want a 8-10 wk glivec washout period and during this time they would test my fertility responses and basically work out the fastest way to get me pregnant - very romantic, poor hubby! Probably this will be via IVF just to maximize our chances. She said that there was very little data on how much using IVF increased the pregnancy rates in normally fertile couples because fertile people don't use IVF, but she thought that it would probably be our best bet.
I was very reassured that my hem went straight to the Aussie CML guro Tim Hughes with the pregnancy questions. My fertility specialist is also the head of fertility preservation with cancer in this part of the world. It is somewhat less reassuring that they all acknowledge that this is a difficult situation. They are probably not giving you answers because they don't have enough data to be confident - my fertility specialist forwarded me every paper she has on the topic and it was not a lot. I know that they put in a grant application for funding to collect data on CML pregnancies and that if we get to try they will take as much data as possible from me. What the current data does show is that there are risks both for us and the baby but the majority of pregnancies are successful. I use the word majority very loosely and not in a way commonly associated with pregnancy outcomes. I feel comfortable reading the research papers, because while I am an academic in a completely different area the method of reporting results is not so different. For others (e.g. my husband) reading papers about % of birth defects etc is a bit too confronting. In any case I always ask the specialists to explain the literature to me - they are the experts & I am an engineer. Are the people treating you CML experts or generalists? I wouldn't be comfortable (rephrase... I would be even more uncomfortable) going into this without the most experienced team available.
As they keep telling me more, I'll keep posting it.
PS I wouldn't worry about having started treatment - I was low risk (WBC 13,000 and only 90% positive fish) and they (as in my hem consulted many hematologists world wide) still wouldn't entertain the idea of waiting for a pregnancy to start treatment.