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Unsure what to do

Hi

you may have read my post back in June regarding pregnancy and that I had dropped my nilotinib in may this year.

i am currently nearly 23 weeks pregnant now, but received a call from a locum consultant to say my result is now 0.45 and basically was scare mongering me saying it's dangerous and I should start interferon but it's my decision, he left me in tears and didn't appreciate his approach.

i personally do not think after 5 months cessation that this result is that bad!

i am aware it's above mmr however, I don't think the upset and stress is needed so soon

just wondered what every ones thoughts are

much love

hannah

Hi Hannah,

 

Congratulations on your pregnancy. I have had CML for 10 years now and had three pregnancies since. I managed to have two of my children at full term, 42weeks and breastfeeding till 8months. With careful monitoring I managed to keep off medication( Nilotinib for that length of time. Talk to your consultant and I am sure they will be able to work through the pregnancy with you. You’ve got a fight in your hands but I pray all will go well for your pregnancy.

Hi martha

thanks for your reply, may I ask what your bcr abl levels did whilst off the treatment? 

 

Hannah

Dear Hannah,

Firstly, congratualtions on your pregnancy.  I am not sure if you are treated here in the UK, but you are right to question the 'locum consultant" and his rather unsympathetic messaging by phone! I suggest you ask your treating consultant to go through your PCR results with you since stopping. It would depend on where you were when you stopped therapy as that would be your baseline and would allow you and your doctor to make an informed choice about whether you need to urgently start therapy with interferon. 

Sandy