29 replies to this topic

[luvmybees24]

Can CML or Tasigna affect menstrual cycles? Mine came 2 weeks early and has lasted longer than normal. No way I could be pregnant or misscarrying or anything like that. Just wondering if it affected it?

Laura.

[GerryL]

Hi Laura,

We've talked amongst ourselves about whether the TKI impacts our menstrual cycle. Some have had their periods become a lot heavier, I've always had heavy periods so didn't notice any difference. But I think I am moving towards menopause a bit earlier - currently in my mid 40s, perhaps due to the TKI?

You're also in the early phase of diagnosis, so are probably still under a fair bit of stress from that. Stress can play up with your menstrual cycle as well.

[AmyH]

I am worried about having my actual first period since being diagnosed with CML.  Should I worry about anything?  I haven't had mine since 2009 b/c I was pregnant and then nursed my baby for the last 16 months. 

[Dina]

My doctor has asked me if they have stayed normal, luckily they did, so no problems with me.

Hi AmyH, you said you were breastfeeding your baby for 16 months, how long ago did you stop before getting diagnosed?

I breastfed my second child for 3 years and 3 months, after stopping I was dx within 6 months.

By breastfeeding we thought we are doing good thing for our babies and ourselves as well, sometimes I wonder if

breastfeeding have caused us to get CML, I know I know it's silly to think that but in my case I was breastfeeding way too long!

Anyway I'm glad I did it, at least for my baby.

Dina

[AmyH]

I had to quit nursing him cold turkey when I got diagnosed.  It broke my heart.    I would have nursed him until he was at least 2.  I nursed both of my girls until they were 2 and 2 1/2.. 

I don't think breastfeeding (a total natural thing) could have caused CML though.  I think its more of the crap in this world.

[luvmybees24]

Nothing you could have done to prevent this. My dr. said unless I was exposed to a lot of radiation there's nothing I could have done.

[Dina]

I know its silly to even say something like that, but there must have been something that weakened our immune system!

[luvmybees24]

nothing to do with the immune system. It's cancer. You can't catch or fight off cancer..it just happens.

[CMLSurvivor]

I had a constant menstrual cycle for over a year and a half. I finally had to have a hysterectomy to stop all the bleeding. I think it is a side effect (not a common one) some people experience from the medications we take.  I had my OBGYN and Hemotologist talk together and they worked all the tests out together and came up with the best plan for me. It is not the same for everyone, so talk to your doctors.

[Tedsey]

I had a situation similar to AmyH.  I had been nursing for 3 years before dx and was nursing a baby when I was dx.  I did not get my period during that time.  When I stopped nursing, I got my period.  It was extremely heavy.  My first onc gave me progesterone, but it didn't do anything.  I became severely anemic.  It got to a point where I was on the edge of bleeding to death (no kidding, I was almost sent to the ER a couple times).  Anyway, after some blood transfuions and horrible shots to boost my RBC production, I saw a gynecologist (at the urging of this CML group actually--so the advice here is good).  She put me on birth control.  The periods dwindled and stopped (but I never in my history got a period when I was on the Pill).  No one is sure the heavy bleeding is from the TKI because so few women get CML in their childbearing years--so, not much data. It is possible also that my menstral cycle "changed" after having babies.  At the time I saw the gyne, (six months ago), I wasn't starting menopause.  When my gyne did a biopsy and ultrasound, (my pap came back abnormal--she thought this was due to the TKI), I was still developing eggs (despite the bloodshed--go figure).  But I also wonder if the drugs can push women into an early menopause.  Seeing a gynecologist would be a good idea.  Like many people who are dx with cancer, you tend to forget there is anything else going on with your body and your oncologist becomes your doctor for everything.  It was a little scary going to a "normal" doctor.  Don't ask me why.  Maybe it was because I don't consider myself "normal" anymore.

All the best in solving this problem,

Tedsey        

[AmyH]

Good to know Tedsey!  I will definitely talk to my Oncologist on Wednesday and talk to him about seeing a gynecologist.  I'm very nervous about having this first period.... 

[KerriD]

I think the CML made my periods heavier and it is part of how I got DX.  I went for my Annual OBGYN appt and the nurse asked about my cycles and I said they we heavier and lasted longer.  She suggested we run a CBC to make sure I wasnt anemic and BAM ...my number were crazy and yadah yadah yadah...

After starting Tasigna they got even worse...so my OBGYN suggested Uterine Ablation. Which is a procedure where they laser the inside of the uterus.  Many women after this procedure never have bleeding again.  I had the procedure done in Oct and although I still am having periods...they are much much lighter than before.  Which I believe has really helped with my overall health and energy levels.  I would urge you to discuss ablation with your OBGYN and Onc....

[Happycat]

I think both the cml and the TKI affected mine.

I never really had super heavy flow before.  Then about 2 months before dx'd , I started blowing thru tampons way too fast. I was having some bruising problems too, in fact was dx'd due to a huge hematoma that sent me to dr.  Anyway, I think the cml in conjunction with huge amounts of ibuprofen I was on for a neck injury led to platelet clotting problems.

Then I started gleevec.  First period was a doozey. So were the first 4 or so. I think it is getting better as my body adjusts. Now I have 1-2 heavy days, then not much of anything. So instead of being a 4-5 day period, I have a 2 day period, with everything trying to fly out of me at once. I've just learned to excuse myself from meetings before I regret it.

Traci

[Marnie]

We had this same conversation a few months back, I think.  There seem to be quite a few of us who have noticed a change.  I've always had pretty light flow, but since cml and TKIs, like Traci, my periods can be real gushers.  Sheesh!  Or maybe it's age-related for me, or (most probably) a combination of both. 

Marnie

[Susan61]

Hi Marnie:  Boy, I am really feeling old reading all this menstrual cycle stuff.  Mine stopped the same month I started my Gleevec which was in 2000.  The only thing I can add is that the last year before I stopped, I had a rough year of excessive bleeding to the point of hemorrhage.  I have talked to so many people who went through it.  ITs like your system is cleaning out for the last time before its all over.   I went from hemorrhage type periods to just nothing.

If anyone is getting near that age, that is what could be going on.  Just thought I would share that litte tidbit of information.  Now I live with overactive bladder issues at age 64.

[jjg]

Has anybody noticed any difference in the time between periods i.e. cycle length? When I get them they have been a bit weird: some really light ones but mostly as traci mentioned, similar blood loss in shorter time. The main change is the length of cycles, I used to be a 28 day girl but in the first 11 months on gleevec I've had cycles btw 30-60 days. I'm 38 but a bit skinny, only just heavy enough to menstruate.

[Pinkbubbles9642]

I don't have any change in time cycles or length / flow  but ever since diagnosed I have gotten cramps out the wazoo! I've never in my life had cramps before on my period, I'd have lower back pain some and period would last 3 days and it was done. Well i'm still only lasting 3 days 4 tops but now on my first day of cycle omg it feels like I'm giving birth! I get cramps so bad I'm screaming in pain until they calm down, kind of like a contraction (though I have no children). It comes on like ever 4-7 minuets, yes I've timed them lol. and it's so bad i hunch over in pain screaming as if I'm having a baby until it calms down then I can handle it until it comes back on. I have took motril, vicodin, heating pad, warm bath and curling into a ball in my bed. NOTHING seems to help, I called my ex's mom (unfortunantly my mother passed away 2 years ago) and was crying telling her I think I was having a baby but there was no possible way cause I' have never done "that" before. We called the nurse on call and I made aan appointment to be seen with my gyno after my period ends but has anyone else experienced this?? The nurse said could be a uterus diesease or could just be my body changing since I just recently turned 21 but like I was diagnosed at 19 almost 20 andi t's been like this since on all the meds. Please say someone else had this problem and I'm not just a black sheep in a heard of lambs : (

[luvmybees24]

First period after I started my meds (about 2 weeks after) i had the WORST CRAMPS OF MY LIFE! I was on the toilet rocking back and forth thinking "if I was sexually active I would definitely think I was giving birth right now". Called the dr. and he said it had nothing to do with my meds. I've been cramp free since but just have longggg periods. Mine just ended after a week. (I'm a 3 day-er).  You are also just 21 and your cycles can still change around a bit. I started when I was 13 and I am almost 35 now...in the past 4 years I have developed sore breasts before my period as well as different cramps then I had before..and this was before I had leukemia. I would go see a gyno about those cramps though. It's not normal. Sadly, I can't have anti-inflammatories on my Tasigna (not sure what you take) so I have to take Tylenol or ask for Vicodin or Tylenol 3. My dr. is ok with giving me the Tylenol 3.

[luvmybees24]

Oh sorry I didn't read the rest...good you are going to the dr. It could be endrometriosis? That causes bad cramping. I hope it's nothing serious for you!

[Pinkbubbles9642]

Thanks for responding, glad to know I'm not the only person. Well I'm not glad you had a bad one but you know what I mean hopfully lol. Yes a lot of older women then myself say your period changes but like it just seems to have happened after i started.. one thing you said and i'm wondering about, I was just switched to Tasigna like this past week and we are not allow to take anti-flamatories??? Well that's interesting to know cause I have been, I got for my EKG again on Thursday hope I'm okay. I already have vicodin prescribed to me from when I was on Gleevec cause it was horrible to my body so I'll stick to that but just curious.