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Does anyone know how long you need to be off Gleevac before trying to get pregnant?


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#1 lseaturtle79

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Posted 15 October 2012 - 08:24 PM

I was told I could stop my gleevac to have a baby. However before I stop birth controll I was wondering how long befor I should stop the medication.



#2 GerryL

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Posted 16 October 2012 - 02:01 AM

Erin Zammett Ruddy comments that she was on Gleevec right up until they knew she had conceived - this was done under her oncologist's direction.

http://articles.cnn....ts?_s=PM:HEALTH



#3 Trey

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Posted 16 October 2012 - 08:45 AM

A conservative approach could be one complete ovulation cycle.  But it seems to be more about the fetus than the egg.



#4 jjg

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Posted 16 October 2012 - 06:52 PM

My fertility specialist wanted (demanded) a three month washout. To me this seemed horrendously long and I did loose PCRU in that time. However, this washout period is consistent with a recent paper by Jorge Cortes & Hagop Kantarjian, Blood 2012http://bloodjournal....e&submit=Submit:

http://bloodjournal....0.full.pdf html

I'm not sure if all can download this (I'm at university) so the pertinent quote is "For a patient who wants to become pregnant, our approach is to advice to plan the pregnancy and try to aim for a response as deep as possible, ideally at least an MMR. Then we interrupt therapy, with a preference for a 3-month washout before conception and for the duration of the pregnancy."

I was told that glivec affects the selection of viable genetic material, so maybe it makes sense that the problem is more with the fetus (not being naturally aborted when required) rather than the egg but my fertility specialist was very insistent that the eggs develop in your body over months and exposing them to glivec may effect genetic selection. She wouldn't take risks with the child. Obviously this increases the risks to the mother but I had to remember that parenthood is all about the child. In any case the mother is preparing for a long period off TKI treatment so a few more months should be acceptable... mind you I still wasn't happy about it and I still don't know if it was the right thing. People do conceive on glivec and more often than not everything is fine... but it's not always fine... I just couldn't knowingly expose a child to that that risk so I had to absorb the increased risk myself. In the end we haven't been able to get pregnant. I only got a couple of cycles before I had to start interferon and that was so hard it put my already marginal body into ovarian failure for a few months.

The length of washout is a very important question - you should definitely be consulting your doctors on this one. Good luck.


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


#5 lseaturtle79

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Posted 16 October 2012 - 07:14 PM

Thank you for the article, it will help my husband, doctor and I decide what to do.



#6 lseaturtle79

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Posted 16 October 2012 - 07:17 PM

Thank you for the article it was helpful.



#7 Trey

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Posted 16 October 2012 - 07:31 PM

A primary concern is to minimize the time off the TKI drugs.  Taking 3 months off as a "washout" somewhat defeats this.  You know that you will take 9 months off, plus time to become pregnant.  Adding another 3 months is a long time, and could be risky to the woman. 



#8 jjg

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Posted 16 October 2012 - 10:25 PM

Actually THE primary concern is to have a healthy baby. If the other concerns (i.e. for me) were too much then surrogacy is an option.

Btw my docs are more "comfortable" with using glivec in the third trimester of a pregnancy then in the 3 months before conception - I had opinions from 3 onc/hems (incl. a leading CML specialist, not Cortes) and a oncology fertility specialist. Time may prove that the 3 month washout is unnecessarily conservative, but wouldn't you hate to be wrong.


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


#9 Trey

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Posted 17 October 2012 - 10:41 AM

It would be interesting to understand their rationale and data used.  It is not a trivial issue to keep the woman off CML drugs for a minimum 13 months (9 + 3 + 1 assuming a very quick pregnancy) and probably more like 14 - 16 months.  When making the decision to become pregnant the woman with CML should look realistically at the risks of such an extended drug break.  Letting CML advance will not be a good thing for a fetus, and time off drugs is the important factor.  And the more the CML advances, the more pressure to use other drugs such as hydroxyurea and interferon, which are not necessarily safe for a fetus.  So while taking a very conservative approach about an initial washout period may seem like a very good idea, it could actually be a more risky approach. 



#10 lseaturtle79

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Posted 17 October 2012 - 07:59 PM

Thank you everyone for your help. I wanted some solid info for myself before I approach my husband about the subject again. I am hoping when the time comes in the near future to get pregnant quickly and spend the least amount of time off gleevac.



#11 Pin

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Posted 19 October 2012 - 12:28 AM

Oh I'm so sorry to hear about your experience with this - it sounds like it was very difficult with what is already a difficult process without our added CML complications I have been wondering about you from time to time, so I am glad to hear from you though. Are you back on Gleevec again now? I would love to hear more about your experience just in general terms, especially how you reacted to being off the medication, but only if you feel comfortable to share. Again, Josie glad to hear from you xxx Pin.


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





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