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Good morning,
My name is Sabrina , I am 31 years old, I live between Italy and Uk and I have been diagnosed with CML  almost 5 years ago. I am on 600mg/day Nilotinib(Tasigna).Firstwall I want to say thank you to whoever is running this site, I have never posted here but been following the articles and forum for very long time and it helped me a lot in many ways and I think this is not a wrong place to come with a question i have.

When I was diagnosed with CML , I was still breastfeeding,so at the time I had not my period.
After I stopped breastfeeding,to be treated to Nilotinib ,my period came back .
At the beginning was normal but after months with the treatment,something changed.
It was really different:every 18 days ,and one time is really heavy ,next period is not so heavy but painful ..this alternates every time.
I asked my hematologist,why did could have happen...’cause ,in my humble opinion and because I know my body,I felt this was a consequence of my treatment (Nilotinib) . Kind of bad side.
He told me that is not a consequence of the treatment and then He told me to have a gynecologist visit.

I went by gynecologist,who didn’t help me so much. She told me ,that this could be a consequence of the birth. And then she gave me a prescription for a spiral,because she told that she cannot give me birth pill control.
She did not investigate a bit about CLM and the treatment I am taking.
She limited to :you got leukemia,your utero is fine so I am giving u spiral.
I don’t want to have any spiral inside of me,sincerely I prefer to take pills.

So I am here to ask to the ladies :
1- there is somebody out there to have got some problems with the period during the treatment ?Pls share your experience,cause I see my hematologists do not believe me so much (for me ,always in my humble opinion,I don’t want to offend nobody,they don’t have so much dates about young women with CLM ,cause is a disease that attaches mainly older men ,or in general men)
2-if there is some woman ,who is taking birth control pill during the treatment.If yes ,pls share which one so I can speak with doctors.
Actually I don’t want any spiral inside of me,I am really scared.And bad sides scare me so much.I already have a lot of bad sides from Nilotinib I don’t want others..
I want to take the pill ,cause ,if I feel uncomfortable with it (cause the bad sides),I can stop it anytime..instead with the spiral I have to return to the doctor,etc...

I apologize for my English.

Thanks for your support and patience.

Sabrina

Hi Sabrina! 

Your English is fine, no need to apologise! 

I'm not on the same drug as you and except for when I was on the chemotherapy pills I haven't had any issues with my period. This must be so frustrating for you! Could you change gynecologists and ask that they check on your hormone levels and so on? I'm sorry I don't have any better advice!

I still wanted to reply though and offer support. 

Thank you Sandra for your answer and your support:)
Yes ,you got the point :it ‘s frustrating!
Next step will be for sure to have another visit by a different gynecologist and try to find out a solution. And I ll make an ormonal blood test.

I know for sure ,I can feel it ,that this is a consequence of the treatment or at least from LMC. I just want to find out.
It’s difficult,but I never gave up and I ll never give up.

Thanks again

Sabrina

Sounds like a good plan! Stand your ground till you get the help you need! 

Good luck! 

If you feel like talking then feel free to pm me. 

Hi Sabrina, I am on the same medication as you as well as the same dose. My menstrual cycle was always painless and every 28 days before taking Nilotinib. Now it is everything you have described. Irregular, painful and unpredictable. My gynecologist and my oncologist have both told me it is related to the chemo.

Hi Sabrina,

I am on Gleevec and my periods went totally crazy,i have a period and then nothing for months,i did a hormone blood test just before diagnosis due to feeling unwell and it happened to be CML that was my problem,the GP did these testsfor hormones and all was fine and now its not.

I am however 50 and this last year i think its that i am heading into the menopause.

hope this helps a bit

all the best

Harriet

Hi Alana,
I am so “happy”to have find you.
I almost started to think I was the crazy one.
Same as you.
Before CLM ,my period was pain free and every 28days or more and It was not heavy at all. My Best friends used to envy me at that time,’cause for me was so stress free.
My period didn’t affect my life before.

Now? Its  a nightmare!
It affects my life . It puts me so down physically and mentally.
I am really grateful to Nilotinib,because saved my life..but from the other side ,it destroyed it.
Now I am so exhausted.

Alana,have you ever tried to take some contraceptive to regulate it?
What did the doctor tell you?
Is there a solution?

I am asking this to you,if you have more information respect me ...
If the doctors told you more ...
‘cause when I go to be visited by my hematologist (every 3 months) ,he or she (it depends,they change every time) asks me how I feel,etc..
And every time I speak about this ,doc does not give me answers.
It is really frustrating...

thanks Sandra for your support!

You gave me one of the best advice(hormonal test)that not even a gynecologist gave me.
Big thank you ,really kind.

thanks a lotheart

Hi Harriet,

thanks for your answer.

it helps a lot. Really a lot. Because thanks to you and the other Ladies ,I have more answers. And I do not feel alone. 

Sabrina

 

 

 

Hi Sabrina,

Neither doctor has offered a solution to regulate cycles or manage symptoms. The gynocologist tested my thyroid levels to rule that out as the cause, but they were normal.

I recalled from some years ago, prior to my diagnosis, a physician telling me about his wife having terrible cycles and she started eating a diet free from dairy, gluten and legumes. He insisted her cycles became tolerable and uneventful after the diet change. Not sure if it is all related or all in my head, but I started staying away from those foods and the last few months my cycles have been remarkably less painful and much more regular. I also started taking 5,000 of Vitamin D3 daily. My energy level has gone from non-existent to actually being able to work 40 hours a week and having a social life on some weekends. I'll continue to monitor and see what happens. I do hope you can research and try some small modifications that are able to help you. I wish you all the best.

I believe you when you say you know your body best!

 

I´ve been feeling like my periods got more painful in the past few years, even before 2016 when i got CML, I dont know if this aging or CML or both. Recently I started taking Cerezet (mini pill), with my imatanib, its working fine and after an initial few weeks of spotting bleeding, i dont seem to have any periods (or any pain) now. I have been taking Cerezet for 4 months. 

I used to take Noriday, a similiar pill, when i was younger and I did have regular light periods with it. This is no longer available in Europe but you will find in the UK. 

Thank you EvaH,

for your answer and your support.

Now i know there is somebody ,who is taking mini pill while on the treatment for CLM. So there is a possibility,instead of the spiral.

It is really important to share our experience,with CLM and with the treatment. We really can help each other. :)

thanks a lot :)