21 replies to this topic

[janner25]

Hi - so I've been on tasigna since the end of October.  My cbc blood counts are all good (hemaglobin, platelets, and wbc).  However, my monthly 'friend' that I love to hate is getting RIDICULOUSLY heavy and clotty for the last 2 or 3 months (and considering I've only been on tasign for 4 months I am trying to link to tasigna).

Has anyone else experienced this?  I go to the OB/GYN in May and will be discussing options for ablation - but didn't know if anyone else has had this?

Thanks.

[HeatherZ]

I am on Gleevec and also have the same problem.  In addition to it becoming very heavy, I have also noticed I'v been getting it more often - about 3 weeks instead of 4.  I've also been considering discussing the abalsion as an option since I am having an issue with anemia.

[knoppl]

I have been on Gleevec a little over a year and saw the came changes about a month after starting. It has gotten a bit better and not as heavy but do have big clots the first day or so. For me  I suspect it is the drug since it started after I started Gleevec.

[GerryL]

Mine have been heavy with clots in the last couple of years or so - prior to being on Glivec. I figure I'm drawing closer to the big M. Which I guess is another to question to ask your Gyn - can the Gleevec move you closer to menopause? I'm also on iron tablets for the anemia and take vitamin C and B/folic acid to help the body absorb the iron better.

[Marnie]

While on Gleevec, I had similar issues.  Never had problems with my period before, but since Gleevec, MUCH heavier flow, usually after a couple of days of spotty starts and stops.  Longer duration, and shorter time between.  Now on Sprycel, I'm noticing other weird things.  My nipples HURT for a full week before my period starts. . .and I mean PAINFUL!!!  Bad gassy and crampy, too. . .and that wasn't a problem before.  I'm trying to figure out how much is the TKIs and how much is getting old and the body is just changing.  Dang.  How annoying is all of this?!!

Marnie

[GerryL]

Sprycel isn't causing you to have PMS now?

[Marnie]

Never had a day of PMS. . .just ask my husband!!

m

[jrsboo]

Hi girls,

I just read the most fascinating article about cancer and having one's period.  Turns out that less periods are better!!!!

"John Rock's Error" by Malcolm Gladwell   http://www.gladwell...._10_a_rock.html

Absolutely fascinating.  Wish now that I had asked for my ovaries to be removed along with my uterus.  Sigh.  Why don't the doctors tell you these things????

Short synopsis:  Historically women have only about 100 periods per lifetime.  Modern time, we now have about 400.  This is a lot of hormonal changes that the body is having to deal with, and apparently every time an egg is produced, it creates a tear in the ovary, and the regeneration of the ovarian wall creates a greater possibility of the regeneration having a mutation, and thus a greater chance of getting cancer.  Same idea with breast cancer, with prolonged progesterin (the pill) working on the breast tissue, the more it regenerates and again, a higher chance of getting cancer.

So those new birth control pills that only give you 4 periods a year are the way to go I think.

The less other cancers I get, the happier I will be.

Happy reading.

Caroline

[GerryL]

Hi Caroline.

You could always skip having a period with some of the earlier pills - you just skipped the sugar pills and continued on. There was a lot of information around that if you did take the pill it reduced your chances of ovarian cancer - so hopefully the time I spent on the pill helped there. Unfortunately once you get into your 40's the GPs don't like prescribing the pill to you due to the other side effects of it. I wanted to get a script for my trip overseas and it was strongly suggested not to bother - and I didn't.

Haven't seen anything on the new pill yet.

Gerry

[jrsboo]

Well, all moot for me now, I had a hysterectomy in 2008.  Best darn surgery on the planet if you ask me!  But then, I was hemorraging and having to take 9 birth control pills a day just to keep from bleeding to death......sigh.

[GerryL]

Wow - why didn't they rush you into surgery straight away?

[jrsboo]

Cause it was a Saturday and I had to wait for Monday to talk to my Dr., and then he had to work it into his schedule.  Happened pretty fast after that. And healed remarkably fast.  Yes, I wish that he had listened to me for the year leading up to the surgery, I knew something was wrong.  But I look at it as all prep work for dealing with CML.  I learned how to be my own best advocate and how to force issues that drs might want to overlook.  And not to take poor care from hospitals and nursing staff.  See how much smarter I am now???

Life is a process. 

Caroline

[SunNsand]

   I had both of my ovaries removed 20 yrs. ago when I was 32. It was a preventative action taken on my part to keep ovarian cancer away, per my family history. After the surgery, I did feel, for the first time, that I had a chance at a long life, and I have had one! I will continue to have one, even with CML! I learned you can't trick cancer though. I really believe you cannot outsmart it, out exercise it or out nutritionalize it. The best part was no more Mother Nature presents!

SunNsand

[SunNsand]

I agree Billie.

Good thing there are no men reading this topic! Ha

SunNsand

[everonward]

Hi all

I started to have very heavy periods within about 6 months of being on Glivec, my onc thought it wasnit connected so I went to my GP and got referred to a gyno. Investigation showed a largish polyp. I had that removed and had a Merina coil fitted ( it releases progestrone slowly). This certainly did the trick and I became period free - hurrah. That was in June 2006 - I had it removed last year and found I had entered menopause and so the beasties haven't returned.

Once I had the coil fitted and the bleeding issues stopped my haemoglobin counts improved drastically, plu I felt a lot better, bad enough worrying about Glivec side effecrs without the worry of break through bleeds.

My asvice, from my own experience, is get some intervention.

ATB

Marian

[janner25]

Thanks everyone...

I will be 38 in May - so I certainly hope I'm not heading for menopause yet...and I really don't want to go back on birth control pills...I had my boys and my tubes tied while having the c-section for my 4 year old so that would really make me mad if I did that JUST to go back on the pill.

I will ask the OB/GYN in May more about ablation though.  

Caroline - your experience sounded CRAZY!

[Tedsey]

I have been on Gleevec and now Spycel.  My periods are heavy and frequent and clotty (2-3 times per month).  I am also very anemic (go figure).  Once in a blue moon, one of the periods will be normal in between the other frequent, heavy periods.  Since Sprycel, I often start with a lot of brown spotting now off and on and then a full period days to a week later.  

[jrsboo]

Yeah, the really "funny" part is that if my husband is sitting next to me, I get the best care on the planet.  He is a well built, large, ex-rugby playing guy, with spotless military bearing and posture.  I can't imagine why I get such good attention.  But if he is NOT with me, for some reason, I am pushed up against the wall and told to wait, or yelled at for needing too much attention.......which is bizarre, since if I am feeling well, most people smile at me and are happy to help me.  If I am not feeling well, I get crappy service.  Must be some kind of vibe I give off when sick......

Oh well. 

I now have YOU, my VBF's (virtual best friends).  Snicker.

Caroline