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A question for the ladies

Hi,

I wondered if anyone has had any problems with their periods since starting treatment?

When I first started taking Dasatinib I noticed that my periods became very heavy, irregular and extremely long - sometimes lasting in excess of 20 days! My consultant said that this was nothing to do with my medication, but I'm convinced it is as I didn't have these problems before.

I'm also interested to hear what others have been advised in terms of contraceptives. I've been told I can't go on a combined pill and have been given Cerazette, but this has made my periods even worse. Any thoughts on what other options are available or if there is a way to stop my periods altogether?

Thanks, Clare

Hi Clare,

Your story is not unusual I fear. I do know that as least one expert CML clinician (Prof. Jane Applerley of Imperial College Hammersmith Hospital) is very aware that the adverse menstrual effects from TKI therapies can seriously effect quality of life, and that more research needs to be done to quantify just how many women might be suffering in silence.

I know of one person who has had to stop her therapy because of this in the hope that she can maintain her molecular response without treatment. She told me recently that she is feeling well and the effects she endured over some years have disappeared since she stopped. Obviously if her PCR shows a loss of MR then she will need to try TKI therapy again.

I think many consultants are not aware that some women are suffering from adverse effects on their menstrual cycles etc and that this may well be a side effect of therapy. Maybe you could ask for a referral for a second opinion to HH?

Sandy

Hello, I found last august out that I had CML and started with nilotinib. I'm a 38 old women and as you, I had a very heavy menstruation and also very irregular. I also took some iron supplements that I needed with this blood lost. Now 4-5 month later it start to go back to my normal routine, still quite heavy bleeding, but less than 6 days and in a more normal 28 days cycle. When I was younger I used Cerazette and it is a pill that can cause at the start a lot bleeding. If I remember well, after 6-9 month my cycle completely stopped and I didn't have any menstruation for years. So I guess, between your treatment and the new pill you can get some unpleasant menstruations. I have kids so I'm using a coil now and as I mentioned, it seems to go back to normal now. But as Sandy said, when I asked my doctor about this, he had now idea if it was normal or not. I hope I could help and I hopefully it will go back to normal soon for you too.

Hi Sandy,

Thank you so much for your comments.

It is good to know that others have experienced and thought about this issue and that I am not an isolated case. I have requested a referral to Hammersmith and am keeping a log of my problems.

I am also very interested in the Destiny trial and have been keen to reduce my meds for a while - I'm convinced this will make a difference to my side effects and the tiredness I experience.

Thank you so much for your reply. I hope you had a lovely Christmas and all the best for 2014!

Clare

Thanks for your reply. It's really interesting that these problems occur as a result of treatment and nice to know I'm not alone! The coil is seeming like the best option for me too and hopefully my energy levels will improve again also. This is something I am hoping to discuss once I get a referral. Thanks for your help, C