28 replies to this topic

[fola]

Hi all,

I know there are a few thread discussing how these TKI seem to be causing problems with our menstrual cycles.  Off-cycle bleeding, heavy bleeding, no bleeding, cramps, intestinal distress...It seems like we've suffered them all.  My question is: How are you dealing with it?  Personally, I'm starting to go nuts!

I've had all my hormone levels checked, but they appear to be normal.  However my doctors are convinced that the TKIs must be upsetting my hormones since pre-TKI I was regular with no problems (of course except for CML) and post TKI I present with all the physical symptoms of a woman with a hormonal imbalance.  My doctors think I should go on birth control pills to see if they will help.   However, I know BC pills can make you cranky, depressed and murderous.  Well,  since TKIs can have the same effect (at least that's what my friends and  family have told me), I would hate to add insult to injury; but I would  love to feel better. 

Off those of you who went the birth control pill route: did they reduce your symptoms? Did they add symptoms? Do you have a pill type preference (e.g. low-dose, progesterone only, estro+progestro pills)?

Thanks everyone.

[Tedsey]

I am taking Loestrin Fe.  It stops my periods completely (but if I miss a pill, I bleed almost immediately).  So far, I don't want to kill anyone (and I have two toddlers).  I used to bleed so heavily I was always on the verge of bleeding to death (no kidding).  Does your family really tell you the TKI makes you cranky and depressed (I assume you have not attempted murder yet)?  Just being dx with cancer could do THAT to a person.  Tell 'em to cut you some slack. 

To answer your questions: 

1.  The pill cured my heavy bleeding.

2.  Cannot tell what the added symptoms are.  Bloating seems to be part and parcel to a woman's existence.

3.  No preference, but I am on a very low dose of estrogen/progestin.  Progesterone alone did nothing for me.

Good luck,

Tedsey

[fola]

Hi Tedsey,

That's good news. So glad to see you're doing well on BC pills.  I'll make sure to ask my docs about the low dose estro-progestro pills.  Luckily, I don't have non-stop bleeding, but I feel like I have more than my fair share. 

You have two toddlers?  Say no more.  If you've managed to stay serene, then I find it fair to assume that BC pills can't make you too cranky.  As far as my family and friends go, I was mostly kidding :-).  They've been very supportive.  They know I'm mostly sad because of my CML and the accompanying side effects.  I try to stay peppy, but I'm not always so good at it.  As far as my murderous and cranky tendencies, those impulses are normally cured with a bowl of strawberries and coconut ice cream. 

Regarding bloating, due to TKIs I'm bloated all month long, but it's definitely much worse the first half of the month. Hopefully, BC pills will help to manage this a bit.

How long did it take your BC pills to cure your heavy bleeding?  Did it happen within a week or did it take a couple months to kick in?

Thanks again.

Fola       

[cleocans]

My cycles are still regular and still last 5 to 6 days.  They are heavier though, some cycles are worse than others.  The extra bloating on top of my water retention is what drives me nuts.

Kim

[pammartin]

Oh boy, never ever thought I would say this, but yee haw for menopause!   

[fola]

I know.  On those days, even my magic stretchy CML bloat pants don't fit.  Makes me feel like the bell ringer of Notre Dame. 

I think I read somewhere that inhibiting cKit and/or PDGF may negatively impact our reproductive hormone cycle.  Since bosutinib does not inhibit these two, I keep hoping that when it gets approved it may help our side effects.  Until then, I'll continue to wear my magic stretchy pants.

[pammartin]

Not one thing wrong with elastic, makes even the most uncomfortable clothing very wearable.

[fola]

So true. Elastic is comfortable and makes everything look sassy.

Especially when you feel like this

[Tedsey]

Happy to hear that your family and friends are so supportive.  Don't beat yourself up over the non-peppy days.  You are entitled.  This is not the common cold.  Anyway, the pills worked almost immediately, (1-2 days).  Like today, I feel like Santa Claus.  I went to a shower and had a hard time finding something to hide my belly.  It is like someone blows me up and then lets the air out, slim, fat, slim, fat, etc... 

The the pill causes bloating too.  So, it's one of those damned if you do or don't kinda things.  Oh well...   

Here is to magic stretchy pants (and menopause--I mean, after what we have been through, what are a few hot flashes, right?).

All the best,

Teds

[fola]

Yeah, I'm thinking of hanging that cat over my bed.  I like his confidence.  He's not bothered by his tubby belly, just resigned to it.

[pammartin]

Love love love this thread!    Thanks

[BY196]

I'm following this discussion closely. Now that my hypothyroidism is being treated, I am left with bad female hormone issues (irregular, heavy periods; raging PMS). My gyn suggested Loestrin in January, but I didn't want to add anything at that time since I was so lightheaded and otherwise feeling awful. Now, I can see more clearly the symptoms that are caused by female hormones and I'm going to return to the gyn and see about the pill. I'm glad it has worked for others.

Beth

[cleocans]

Oh, I can not forget about the cramps.  After I had my two girls I rarely got cramps.  But since starting Sprycel I get them every month and they can be bad.

[Happycat]

I will add this. While I did not have CML while on the pill, I had the 3-month one and LOVED it!  I do wonder what the one week of period would have been like with a 3-mo buildup on TKIs.

I had to stop the pill due to blood pressure issues, so went to an IUD. They have medicated ones that usually stop periods entirely, or you only get it once or twice a year. This was the case for me. However, again that was preCML days. Periods, when I had them, we're extremely light, 1-2 days tops. Took about 6 months before periods got down to 1-2 per year.   If cost is an issue, you might want to check into IUDs. They last 5 yrs and when you consider copays for BC pills, it turned out cheaper for me. It was a bigger outlay initially, but cheaper in the long run.

I had my tubes tied finally, then got CML a year later.  So I use tampons mainly and now I just time it. Change tampons every 3-4 hrs, use backup light pad just in case.  This has worked well for me. But I do have to strictly time it, and step out of meetings (or plan around meetings) to keep on schedule.

HTH,

Traci

[fola]

Hi Beth,

May I ask, did you have hypothyroidism pre taking TKIs?  As for me, I never had any thyroid issues before TKIs, and even though (in the past) my thyroid blood levels tested normal, my docs still suspect that my TKI may be affecting my thyroid.  They agreed that it was possible to have normal thyroid hormone blood levels, but have the hormones ultimate effectiveness reduced by our TKIs - i.e. functional hypothyroidism. 

I wouldn't be surprised if many of us may be suffering from overall hormonal imbalances due to these TKIs.  After all, many of the symptoms of hypothyroidism seem to be the same as some of the listed TKI side effects - i.e.

• Fatigue
• Sluggishness
• Increased sensitivity to cold
• Constipation
• Pale, dry skin
• A puffy face
• Hoarse voice
• An elevated blood cholesterol level
• Unexplained weight gain
• Muscle aches, tenderness and stiffness
• Pain, stiffness or swelling in your joints
• Muscle weakness
• Heavier than normal menstrual periods
• Brittle fingernails and hair
• Depression

It does make you wonder. 

Thanks for your thoughts.

Fola

[BY196]

No; I never had any thyroid issues before TKIs--no symptoms and nothing in my labs. I agree with your analysis, as does my endocrinologist, who trained at Sloan Kettering. That's why he suggested I try Synthroid even though my labs were within normal range (though at the low end). I have not felt this good since well before my CML diagnosis.

Beth

[KerriD]

It was the heavy period that helped me get my diagnosis.  I went in for my annual with the gyno and  complained about how heavy my periods were and she ran a CBC to check to see if I was anemic.  Boy, was I .  So after DX and on Tasigna...my periods got WAY worse.  My gyno and onc agreed that Uterine Ablation ( lasering of the uterine lining) was a good option.   Many women never have a period again after this procedure. It has helped a lot but I spot all the time.  The heavy bleeding is gone ( thank goodness) but spotting and fluid rention is constant.  My weight can go up and down by 6 pounds in a week.  I will run into someone and they say ,"wow youve lost weight"and I respond wait til tomorrow it will be back.

I do reccomend the ablation if you are suffering....it has helped a lot.

[kellbell]

I have always been regular with my cycle until I started taking the Sprycel. I had my period once in 2 and a half months and it lasted 7 days then stopped for 2 days then started agian for another 5 days.  I would like to try bc pills but am too afraid, because I thought you weren't supposed to take them if you're over 35?