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CML in pregnancy and breastfeeding

Hi,
I've been recently diagnosed with CML during my pregnancy. Currently I'm 25 weeks with my 4th baby and can't start gleevec before the baby is born. T the moment to manage the situatiopn and lower the WBC count I travel to Birmingham Hospital 3 times a week to have Leukapheresis done (posted picture on my blog: http://onephotographaday.wordpress.com/). I'd like to make contact with another woman who is or was in a similar situation. Also I'm concerned about breastfeeding, is it possible at all while being on gleevec, interferon or hydroxureya or any other CML drug? I breastfed all of my other 3 children, each one for 2 years+ and I am heartbroken to think I would have to give my youngest one a bottle. I'm even thinking of extending the Leukapheresis for even 6 months after the baby is born if doctors allow, but they keep repeating I need to get on drugs asap. I will appreciate any advice.
Anna

Hi Anna,

I was not able to breastfeed either of my babies. My consultant urgently recommended that I started Glivec straight after delivery which I did. In my second pregnancy, I lost my complete cytogenic remission and my counts were increasing, so I was actually relieved that my baby came 3 weeks early and I could start on Glivec again.

My babies managed fine on formula. They are now a very healthy one and three. Bottle feeding is also a time for bonding and I loved feeding times. Plus, daddy has no excuse not to give a night feed!

Congratulations on your pregnancy!

Best wishes,

Sharon

dear Anna,

Congratulations on your pregnancy. I understand that it might be tempting for you to extend the holding position of Leukopheresis so that you can breastfeed but I advise you to listen to your doctors advice and start imatinib immediately. CML is not a straightforward disease and just controlling the white count is really not enough to control disease progression. If it were I am sure we would all opt for that ;o)

Your husband, kids need you as well as your new baby, so you need to do everything possible to make sure that you get the best available therapy and follow the advice of your doctors... and currently that is imatinib not Leukopheresis.
I assume you are being treated at Queen Elizabeth's Birmingham? If so it is a very good CML expert centre and they know what they are talking about.

Congratulations once again and best wishes for the birth of your new baby,

Sandy

Congratulations on the pregnancy / commiserations on the CML
I'm afraid their are very good reasons why everyone wants you off the leukapheresis and onto the drugs as soon as possible. The CML is happening in your bone marrow and all the leukapherisis is doing is tidying up some of the consequences in your bloodstream. It isn't doing anything at all to halt the progression of the disease though.
The name of the game with CML treatment is catch it early and get the levels in the marrow down quickly. Delaying treatment of the disease through the pregnancy is a reasonable risk to take if they caught the CML early. An extra day to get the early feeds that may help the baby's immune system is also not unreasonable. After that though, your number one job has to be to get the CML properly under control to make sure you are around to see all your children grow up - which you have every chance of doing now we have Glivec and the other TKIs
Best wishes
Phil