11 replies to this topic

[Anwalz]

Hi there! My fiancé was diagnosed with CML in October of 2015 & has been on Gleevec since November 2015. He's having a lot of fluid retention in general, feeling and looking "puffy" and not being able to fit into his jeans. We know that fluid retention is a top side effect of Gleevec, but I'm just wondering who else has experienced it and what tips/advice you may have regarding this!

Thank you!

[Liamsdad]

Also diagnosed in October 2015 and on Gleevec with fluid retention - face, body and legs. My doctor prescribed Dyazide 37.5-25mg which helps a little but I still can put on anywhere from 5 - 12 pounds of water any given day.  He did suggest I take 2 day when really bad and he had me get my heart checked just to be sure no worries there (luckily that is ok).  If you find anything else that works let us know.

Thanks

[Trey]

He might want to split the dosage half morning and half evening to reduce side effects.

[snowbear]

Yep, I get the puffiness in my face and eyes and abdominal bloating.  Cutting back on carbs and sugar helps.

[gerry]

I found the fluid retention would get worse during summer, if I ate anything with hidden salt eg soya sauce or had any alcohol.

My doc put me on fluid tablets and said to take them only when I needed to, which meant I was always taking them after it happened. Doc and I both laughed when he realised what he said to me.   

[trailcml]

Been on Gleevec 400 since March 2015. I've had very good results but do get puffy eyes. It seems the more sleep that I get the less puffy I am in the morning. The puffiness reduces during the day but never fully goes away.  

[kat73]

Welcome to "Gleevec eyes," unfortunately.  Mine got better by switching to Sprycel, but it's still a problem.  It's true salt, alcohol, and all the other stuff does make it worse; unfortunately, I've never found anything that makes it better.  Definitely worse in the AM, of course.  It has to do with interstitial cell fluid regulation, which is another one of the myriad off-target effects of the TKI's.  I used to amuse myself by cutting out pictures of people in the LLS brochures and the various feel-good ads about how great all this is - they all have the toad eyes.  It doesn't seem to bother some people, but I've just sort of given up ever looking like myself ever again.  Sorry to be so gloomy.  As I said, it has been only half as bad on Sprycel.  Maybe Tasigna is even better, I don't know.

[Cliffee]

I had exactly the same thing while I was on Gleevac for three years.

 

When I looked at Photos I was horrified.

 

My wife is a fitness instructor/Dietitian and no matter what we tried the puffy eyes remained. I eat VERY healthy.

 

 

I switched to Tasigna and it went away completely as did occasional muscle cramps. I switched for other reasons which turned out to be better for me.

 

I remember a visit I had with Dr. Druker in Oregon a few years back. He straight out told me Gleevac does this and Tasigna does not.

[hannibellemo]

You and your fiance (please pretend there is a little accent mark over the "e", I can't remember how to put it there) should be aware that luckily he has the option to switch to another TKI if his insurance allows and the side effects get too bad.

 

I was only on Gleevec for 9 months before my liver took exception to it and I was switched to Sprycel. Of course, he will have a whole new set of side effects to get used to.

 

For me severe water retention would be a deal breaker. I can't stand the feeling!

 

Two things I would try and one has already been suggested, Dyazide. This drug is used for high blood pressure. and is a combination of two diuretics, triamterene and hydrochlorothiazide. It is not as likely to deplete potassium levels 

 

Two, he might consider a low wedge for sleeping, no more than 5 inches or so, or raise the head of his bed on 3' blocks. That will help with puffy face and eyes.

 

When are you getting married? We love good news on this board.

 

 

Good luck! 

[Anwalz]

Thanks everyone, we appreciate it!
We're getting married on August 12th thanks for asking!

[rcase13]

It seems like I have every side effect possible on Tasigna but I have not had water retention. But Tasigna has a strict dietary requirement that sucks. I would stay away from it if you can. It also has the heart warnings.

Congrats on the wedding.

[Gail's]

Has anybody tried ice or cooled off tea bags? My daughter thought they might help the bug eyes. One good thing about puffy eyes is all my little eyelid wrinkles get smoothed out. Hehe