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Planning pregnancy

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Hello,
I was just wondering if anyone has any experience of a planned pregnancy with CML where levels have gone >1% or higher (even higher than 20%) during pregnancy and how this was managed?

As a bit of background, I’ve had CML for over 5 years and am in deep molecular response. I have embryos frozen and am planning on a pregnancy but due to a previous attempt, I anticipate that I will likely lose cytogenetic remission during the course of a pregnancy.

Looking for stories (good or bad) where this happened and how the pregnancy was managed. Thanks!

Hi,

I would strongly recommend watching this video:

https://vimeo.com/778953440

Jane is probably the best in the world about knowing CML and fertility. You will hear people talk about interferon, but these days that isn’t used so much. It’s even safe to reintroduce TKIs in later stages of pregnancy.

Our knowledge of CML has come on a long way in the last 20 years, but our understanding of CML and fertility has come on leaps and bounds in only the last few years. That video is 2 years old, so things may have moved on a bit since then even.

We know that TKIs are dangerous for the foetus when the mother takes TKIs. Years ago we thought this was throughout pregnancy but now we know it’s only during specific parts of pregnancy when organs are formed.

So what I am saying is that this is a rapidly evolving area of CML, and one that needs real expert advice with a clinician who really knows what they are talking about. All I can say for certain is that a planned pregnancy with CML is much easier to manage than an unplanned one.

Where are you treated? Do you have a doctor who is a CML expert?

David.