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Fluid Retention & Gleevec

Gleevec Fluid Weight gain

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#1 Anwalz


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Posted 03 February 2016 - 12:11 PM

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!

#2 Liamsdad



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Posted 03 February 2016 - 01:07 PM

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.


Diagnosed 10/02/2015

Started Gleevec 400 mg 10/29/2015

10/29/2015 - 105% IS 

01/28/2016 - 5.6% IS 

02/02/2016 - 1.31% IS 

04/21/2016 - 0.33% IS 

07/29/2016 - 0.36% IS

10/10/2016 - 0.26% IS

01/11/2017 - 0.16% IS

04/03/2017 - 0.037% IS

06/20/2017 - 0.020% IS

07/24/2017 - 0.34% IS - switching to Tasigna

10/26/2017 - 0.47% IS - off Tasigna and now being switched to Sprycel

#3 Trey


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Posted 03 February 2016 - 02:13 PM

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

#4 snowbear


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Posted 03 February 2016 - 02:32 PM

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

#5 gerry


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Posted 03 February 2016 - 07:29 PM

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. :D  

#6 trailcml



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Posted 03 February 2016 - 09:51 PM

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.  

Diagnosed Age: 45

Diagnosed Date: Feb-19-2015

Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)

Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)


0 Month PCR = 20% 

3 Month PCR = 0.3% 

6 Month PCR = 0.03%

9 Month PCR = 0.019%

12 Month PCR = 0.0095%

15 Month PCR = 0.0104%

18 Month PCR = 0.0095%

21 Month PCR = 0.0038%

4/5/2017 PCR = 0.0057%

8/23/2017 PCR = 0.0096%

12/13/2017 PCR = 0.0114%

#7 kat73


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Posted 04 February 2016 - 12:03 AM

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.

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#8 Cliffee



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Posted 04 February 2016 - 01:13 PM

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.

#9 hannibellemo


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Posted 04 February 2016 - 01:27 PM

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! 



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#10 Anwalz


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Posted 04 February 2016 - 05:21 PM

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

#11 rcase13


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Posted 04 February 2016 - 10:55 PM

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.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg


Cancer Sucks!

#12 Gail's


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Posted 04 February 2016 - 11:09 PM

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
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

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