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Pregnancy considerations


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#1 jjg

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Posted 29 June 2011 - 08:21 PM

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 "

Hi Pin,

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.

Josie

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.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#2 Pin

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Posted 29 June 2011 - 08:42 PM

Josie, thanks so much for this response, really wonderful.

I am also in Australia, so I will ask my haematologist next time I see her about this issue. I guess I'm also really worried that I would be too frightened to go off treatment for that long - I suppose I just have to hope I can be one of the people who can go off treatment without too much trouble.

Thanks again, really helpful - it would be great if you would keep posting info as you get it. There is not a lot of us in this category so it is really hard to find the information.

Thanks,

Pinichio.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#3 Trey

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Posted 29 June 2011 - 09:15 PM

Here are earlier discussions that may provide some useful info:

http://community.lls...age/17035#17035

http://community.lls...age/16023#16023

http://community.lls...age/58025#58025

http://community.lls...age/49081#49081



#4 GerryL

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Posted 30 June 2011 - 01:09 AM

Another link if you're on Facebook  http://www.facebook....2818&topic=2667



#5 jjg

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Posted 30 June 2011 - 07:48 PM

Thx for all the links. It seems that there are more people starting to stop treatment for pregnancy, hopefully the data collectors will catch up with us soon. In ten years time we'll either look back at this and wonder why we were worried or why the hell we were prepared to take these risks.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017





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