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Discontinue Imatinib after 1 year for conception

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Hello,

I am 36 yr old male diagnosed with CML about 12 months back and since then have been on Imatinib 400 mg.

Achieved Complete Molecular response within the first 6 months, which my Dr mentioned as a very good result. Have slowly got used to the side effects now and I am getting back to a normal life with some anemia stablising at 11.4-11.7  (Heamoglobin) over past few months.

Me and my partner would want to have a child and my doctor is considering stopping Imatinib until this happens and if it were to relapse in this period, put me on Interferon-alpha temporarily, and revert back to Imatinib afterwards. 

I have read through many articles in this forum which clearly state that Imatinib is not known to have an impact on male fertility or any effect on child health.

I am worried, if it is a bit early (with just 12 months on) to do this, as most of the information recommends at least 24 months on medication before attempting a stop.  Also, I had severe anemia initially (Heam came down to 9.1 at lowest) while starting with Imatinib and that took about 6 months to get back a bit better, which was a very worrying time for me and my family.  I am worried if by stopping and restarting imatinib, I might have to go through this cycle once more. 

Is there any experiences that any of you might want to share, if you have gone through a similar cycle and advice, if any.

Best Regards

DK

Hi there,

I'm surprised at your doctor's recommendation, to be honest. Do you mind me asking where you are being treated? This advice you are getting from your doctor seems to be very outdated.

It is generally accepted that it is fine to father a child whilst taking imatinib - and increasingly this opinion is widening to other TKIs. It's a different case for women wishing to get pregnant whilst taking TKIs, but for men it's much simpler.

For you, there should be no reason to interrupt treatment whilst trying for a baby.

 

Here's a link to a study which states: Since the first reports of unplanned conception in male taking Imatinib at standard and higher dosages, no increased risk of congenital malformations or increased abortion have been reported.

 

David.

 

I absolutely agree with David that your doctor's recommendation for you to stop therapy whilst trying to farther a child is outdated. He/she may feel that it is better to be cautious but all the data/evidence shows that while TKI therapy may have an effect on the amount of sperm you produce, TKIs do not cause abnormalities in the foetus if the father is the one being treated. For women there is an increased risk of foetal abnormalities if they become pregnant whilst on TKI therapy- certainly in the first 3months after conception. Even so there have been normal births to women who have unknowingly become pregnant whilst till on therapy, but it is not recommended for them to continue with therapy whiles trying to conceive or during pregnancy. 

David is correct... see the following link to a presentation about side effects by Dr. Graeme Smith who was the second speaker during this session at last years UK patient conf. you will find his presentation by scrolling down to the afternoon sessions and clicking of the download button to access his slides - see numbers 9 and 10:

http://www.mpdmeetings.org/london-conference-2015/

Sandy

I'm gob-smacked at that advice.  For certain it's not best practice and in my opinion you're right to be concerned.

I notice that Sandy has referred you to a talk by Dr. Graeme Smith.   I've been seeing him for 21 years now. 

LIkewise i would agree, indeed this was covered this week at the cml horizons conference where they very clearly said fathering a child on imatinib is safe, and on the oher tkis there is growing data. C;early this is a decision only you and your partner can make. Good luck, i hope things go well.

Thank  you David, Sandy, Darley, Nigel for your answers. 

We have decided to not stop the medication and continue. Talked to Dr. about this and he is okay with this as well.

Thanks again, Fingers crossed,

K

That's great to hear, I hope it's put your mind totally at rest.

Good luck!!