24 replies to this topic

[Happycat]

All right, any men out there, I'm warning you, this is going to wander into gross female territory, so if you're male, you may want to stop reading this.

This question is for any women who were still having a period when starting TKIs.  In all my life, I can count on one hand the number of times I have bled through my clothing during my monthly cycle.  Now, it has happened 3 months in a row, once right before I started Gleevec, and twice since I've been on it.  The first time, I was having all those weird bruises, so it's possible my clotting factors were messed up.  (I had been on high doses of ibuprofen for months beforehand.)

Now, however, I'm still having this problem (and have had no ibuprofen since April 6th).  Is this part of the "new normal"??  Do TKIs have an effect on menstruation??

TIA,

Traci

[knoppl]

Sorry for the graphic answer!  The first few months after starting Gleevec I had very heavy periods and would get a bit worried about the amount of bleeding and the size of the  clots. I have been on Gleevec now for 18 months and everything has settled somewhat back to normal but it took about 8 months.  It sounds like you have been on Gleevec for a few months? Since I hit the first year milestone,side effects and my energy has gotten so much better.

[janner25]

Yes - I actually posted on this exact topic probably a month or 2 ago.  I too have the ridiculous periods.  Mine are so bad that I wake up in the middle of the night...with the tampon and pad...pad is a mess!  (Sorry - I know TMI).  It's also really clotty.  Saw my GYN 2 weeks ago and said "SIGN ME UP for an ablation".  So I'm in the process of doing all the tests to make sure I'm a candidate (ultrasound last week, endometrial bioposy this Friday)...as long as they came back fine - I'm getting it done.  Some people don't get their periods back - others notice super light periods!  Only down side is no more children - which although I COULD have been swayed to have another, I had my tubes tied with my 2nd son...so I'm done!  I also don't think I'd have the energy now for another one thanks to the TKIs.

I kept forgetting to ask my onc about the change in volume - but will mention it next time.  My blood levels (platelets and hemaglobing) have all been within normal range - but I've never had the CBCs taken DURING my period - only after or before.

Good luck - and if you talk to your dr. appt it, please let me know what they say!

Janice

[jjg]

Well I've had the opposite reaction. I'm just over 3 months into Glivec (actually dose no. 99 just went down) and I've had one normal period in that time and something that can only be described as spotting. It is kinda making us nervous as we don't want to be getting pregnant while on these drugs and my normally regular cycle is right out the window. I'm on the slim side of skinny and have lost periods for up to a year if I drop a kg or two from where I'm at now, so my theory is that Glivec added stress when my body was already on the edge of ditching the periods. So for me it is definitely having an effect on menstruation but a different one.

[Marnie]

Hey, Traci. . .we had a discussion on this topic quite awhile back.  Seems like (from a number of people's experiences) TKIs can really mess with the menstrual cycle.  Myself. . .very heavy bleeding and disgusting clumps.  At work I do a tampon and a pad and just barely make it, though on a teaching schedule, I can't hit the restroom like a normal person can.   Now on Sprycel, again going thru some weird stuff.  No period for 3 months but with sporatic spotting.  Seems to be normalizing lately.  Maybe it's age related, but I think it's also TKIs.

marnie

[mck_001]

Traci,

I had the same problems...heavy and frequent periods. Finally, in December (I was dx in July), my gyn did a sonogram to rule out anything going on and they found a golfball sized tumor on one of my ovaries. It was benign, but I think that my wacky bloodwork at dx caused this tumor to be formed. Every woman makes little cysts every month, but my thick blood wouldn't allow it to absolve like it's supposed to. They removed the tumor (and the ovary) and my periods are now more regular than they've ever been and not scary heavy anymore. Just something to consider.

[Samcerly]

Have any of you considered having Ablation done?  My SIL has and she no longer has a period.  It was not a big deal procedure, they basically burn the lining of the uterus so that it stops you from getting a period.  She just had cramping for a day or two.  They say you need to have a certain thickness of your uterine lining in order for insurance to say yes you can have it done, but i was thinking you could certainly make the case that with your CML and need to maintain stable bloodwork.  The two people i know who have had it done have not had a period for over 2 years and even though they say it shouldn't affect your hormones both of them feel great, no more PMS.  Just an FYI, I am considering it myself, it just that I am newly diagnosed and my bloodwork isn't stable enough yet.

[Happycat]

Janice,

Whoops!  Sounds like I should have done a search on the topic!  My bad.  Sometimes I forget to do that.

My tubes are tied, too, so I don't need them.  (Heck, they didn't even work when they weren't tied, hence the IVF.)  I'll discuss options with my OB/gyn when I see her in June.  I had an IUD for a few years, and really liked it, no periods, but after the 3rd year, I started getting annoying ovulatory pain that lasted days.  I think it was forming cysts instead of ovulating as usual, so I had it taken out and got the tubes tied.  Never even heard of ablation before.  Will have to research that one.

Thanks,

Traci

[Happycat]

Well, there's one way for you to find out on the pg question, but if you're like I was, you might not want to start it.  I tested myself like crazy and spent huge $$$ on it.  (Entirely different reason then, I was paranoid about having a miscarriage.  Discovered one that way, and from then on I was hooked on them!)

Definitely stress impacts ovulation, so that could be why your cycles are off.  Have you ever considered taking your baseline body temp in the morning?  When you see it suddenly shift upward about 0.3-0.4 deg, that's a sign of ovulation.  Anyway, if you don't see a shift, you know you haven't ovulated.  Might help ease your mind about it all.

Traci

[Happycat]

I've been wondering if it has anything to do with platelet counts changing.  Mine have gone down, but they are still in the acceptable region.  Nice to know I'm not alone.

Traci

[Happycat]

Marnie,

Yeah, that's my problem.  Too many stinking meetings at work, so I can't always get to the bathroom in time. And no one wants to be standing in front of other people, kids or adults, and feel that familiar warm gush.

I'd like to wear a tampon with a pad, but they've added these "odor absorbers"  to the pads over the last few years.  I've developed an allergy to the pads now, and I haven't been able to find a brand without the stupid chemicals.  I looked at the organic supermarket, too, but couldn't find any feminine products there.  I'll have to try looking online for organic pads and cough up the extra $$ for shipping.  I've been using wads of tissues or toilet paper as a backstop, but they're not absorbent enough for a TKI period.  

Traci

[Happycat]

I've been wondering if I'm getting cysts now just due to age.  My ovulation is so painful.  I feel pain for a good 2-3 days.  My ob/gyn has checked for cysts before when I've had the pain.  It usually shows I've just ovulated.  She thinks I'm just super in-tune with my body and feel everything.  I think whatever the fluid is in those follicles must irritate the heck out of my pelvic region.   Might be worth going back for another u/s when I've got the pain again.

Traci

[Happycat]

Yeowch!  Just the description of ablation has me wincing and crossing my legs.  I wonder if it stops the period only, or if it stops ovulation as well?  Hmm, I'll ask the ob/gyn about it.

Traci

[CherylLynn]

In Nov '09 I went to see my family Dr because I had not had a period for several months and thought I was going through menapause...that's when the CML was found...I started Gleevec and then got the period from hell that last over 2 months and required 10 units of red cells to replenish was I bled out...I finally had an ablation and havent had a period since...mind you I had a 

[CherylLynn]

sorry it posted before I could finish my sentence...what I wanted to say was mind you I had a stem cell transplant in Jan '11 and won't get another period now because of the menapause issue the chemo and radiation causes...don't be afraid of the ablation - works wonders!

Cheryl

[LeslieK]

Hello Happycat,

The opposite actually happened to me. I haven't gotten a period for 4 months after starting Tasigna. Ibuprophen does have an effect on your platelets. I'm sure your MD is keeping track though.Before my diagnosis last year, I was getting my period just about every two weeks. That is what made get some routine blood work done. My WBC's were 55,000 and was told I probablly had leukemia! what a shock that was! Watch tylenol intake also. Iwas taking it every day along with 400 mg of Gleevec and my liver functions went through the roof. I'm now on 100 mg of Tasigna and all counts are normal. I get results from my BCR/ABL tomorrow, last test showed 1.9%, keeping my fingers crossed.

Good Luck,

LeslieK

[Pin]

Hi all, I apologize for spamming the boards with my problems today - I am just a bit freaked and in need of some advice/knowledge/experience?   I've been in and out of emergency since yesterday with lower abdominal pain (first on the right) - at first they thought it was kidney stones and sent me home, saying "come back if the pain returns". Which it then did, this morning on the left side. They have checked it out with a small ultrasound and want me to come back soon for a larger ultrasound machine. They've said they can find fluid hanging around my pelvis where it shouldn't be, but that I need a proper test to confirm and check for ovarian cysts or ruptured ones (I guess where they were?).  Does anyone have any knowledge or advice about this? Can Gleevec cause gynecological disorders? Or is it more likely it was from the CML? I'm also worried that I will be more likely to have an infection if there is crap hanging around where it shouldn't be with my lower than usual counts

[Happycat]

Pin,

Ovaries form cysts each month during the ovulatory phase, roughly 2 wks from period to ovulation.  One cyst ultimately grows the largest (wins the race) and that is the cyst that releases the egg.  As you ovulate, the cyst bursts open, the egg shoots out and the fluid leaks out.  Some women, myself included, are often exquisitely sensitive to the fluid.  It really irritates the heck out of the abdominal tissues for me.  I often get a lot of pain with ovulation.  Sometimes it's on one side, sometimes on both sides, sometimes the front only, sometimes it wraps around to my back. 

Google mittleschmirz (German for middle pain, and I hope I spelled that right).  Sometimes, middle pain occurs ONLY at the moment of ovulation, other times, it last for a few days (as it does for me).  That's usually for those really sensitive to the fluid.

I've been to my gyn a few times when the pain is there to get u/s.  They usually see that it has burst in the recent past (day), and can see some fluid spilling in the area.

I don't get bad pain every month.  It varies.  Some months I don't even know I've ovulated, other months, it bugs me for a few days.  Sometimes, it's bad enough all I want to do is sit and curl up into a ball.  (Mind you, I can't do that, but I sure as heck want to!  Thank goodness for my dh - he takes on a lot of chores for me when I need him to.)

Last time, I said something to my gyn about the cysts sometimes having more prostaglandins than other months.  My gyn just kinda nodded her head in agreement, but didn't really say, "Why, yes, they do vary!"  Prostaglandins act at pain receptors and can cause really bad cramping.  I know semen contains prostaglandins (don't ask, it's an IVF thing), so it seems likely to me that ovulatory fluid could have them, too.

You can also have a persistent ovarian cyst.  Usually this happens when, for one month, the pre-ovulatory cyst grows, but then it never bursts in actual ovulation.  Instead, it hangs around for a few extra weeks, sometimes months.  This can easily happen during times of high stress (like getting a dx of CML).  Stress can throw off the hormone cascade that must happen for ovulation to occur.

Lastly, I will say that I noticed much more painful ovulation the first few months following my diagnosis.  I half wonder if the stress doesn't somehow increase prostaglandin production during the ovulatory phase.

HTH,

Traci

[Tedsey]

I wouldn't worry about the men.  Everyone here should be able to handle a little blood (in any form).  Anyway, I had the same deal right after G, then S.  I became very anemic too.  This seems to be an issue with the TKIs and women of childbearing age (or still menstruating--one in the same).  Sadly, there are so few of us, this issue is hardly considered (OK, thought about it, maybe jotted down a note, OK, done).  If you have PLT issues, that may also be fuel for the fire.  However, with a little help from a gynecologist, your problem may be solved.  After bleeding like a stuck pig for almost a year, I was given low-dose estrogen (a.k.a. birth control pills).  It worked for me.  Now I deal with bloating and weight gain, but I no longer soak my clothes 3 weeks out of a month (I actually had 2-3 periods per month).

Best of luck!  Hope this helped.

Teds

[Tedsey]

Traci,

I totally agree with you about the stress.  I think it wreaks all kinds of physical havoc.