My name is Jemma, I'm 29 years old. I was diagnosed with cml at 6wks pregnant with our now 3year old twin boys. I was advised by my specialist to terminate but I refused and with the support of my G.P (also midwife) made an informed decision to continue my pregnancy.I declined treatment whilst pregnant and managed fine with my cell counts only rising very minimally. My pregnancy was excellent with not 1 day of being unwell!! I then breastfed them for a month and started glivec after that. Its taken almost 3 years but now have "undetected' results!!! Yippeee!! We want another baby, we have spoken to our specialist and also another one who specialises in high risk pregnancy and cancers. As I had my jadelle removed two weeks ago and are now trying, on advice from my specialist today ive stopped glivec. He is contacting our high risk doctor to make a plan but from what they've both said it seems as if the plan is to use interferon whilst trying to conceive then for the first trimester nothing then back on interferon until baby is born. Since I have achieved such a good molecular response and bloods are coming back undetected I guess we'll take it week by week as we did with our pregnancy with the twins, my opinion only of course as I am fearful of being too unwell on the interferon. I think sometime in the next couple of weeks I will be starting on it. We very much want another child, our little family is everything to us. Does anyone have words of wisdom and experience that would be helpful?
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CML Pregnancy!!
Hi Jemma,
Thanks for sharing your story. It is very uplifting to hear about your experience, especially being pregnant at diagnosis. It is wonderful that you were supported by both your GP and midwife and with such a wonderful outcome ;o)
You say you have taken almost 3 years to reach MMR -bcr/abl undetected- and I am wondering how quickly you reached CCyR (1.5% bcr/abl) after starting imatinib - within 12 months,18 months?
I am asking this because those patients who have deep molecular responses (MR4.5% and less) are usually asked to continue with therapy for at least 2 years before discontinuation.
In your case, you have been offered interferon- and I understand why you are reluctant to suffer the side effects, but.... if you have not had your 'undetectable' result for very long, it would be advisable for you to consider taking IFN to ensure your bcr/abl levels do not rise- and you lose your molecular response.
IFN will keep you in molecular remission- and will not harm your baby. In the EU there is the option of low dose pegulated interferon which is more easily tolerated. However it is not available here, at least through the NHS.
I know of some patients who had major molecular responses who stopped TKI therapy and have maintained their response over many years on Peg IFN alone.
Best of luck,
Sandy