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Swollen ankles and puffy eyes


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#1 MarieC

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Posted 10 September 2013 - 11:09 AM

Does anyone else have swollen ankles and puffy eyes from taking Gleevec?  If so, what have you done to alleviate these problems.   do they go away eventually? I know taking a water pill might help, but until I have a Dx on my kidneys I don't want to take one.  What have others done?  Also, does anyone else have bloating of stomach all day? Does it go away too eventually?  I have been taking Gleevec for 1 month,  the bloating does ease up around 4PM, and I do take the Gleevec at breakfast, so hope there is a solution for these problems.

So sorry to be such a complainer, but am getting so depressed.

Thank

MarieC



#2 Rissa

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Posted 10 September 2013 - 01:42 PM

Hi Marie,

I was diagnosed in April of 2011.  My eyes were puffy every day for months and then they'd get puffy less and less.  Now I rarely get puffy eyes.  My ankles also swelled up in the beginning.  Now it's only occasionally.  Gleevec is dehydrating so drink plenty of fluids.  I don't drink much when I take my pill.  My stomach seems to tolerate it better if I eat starchy foods and just a little bit of water when I take my pill.  But then I drink plenty of fluids the rest of the day.  The puffy eyes is a well known side effect of gleevec, but it does get better.  Hope that helps a little.

Rissa



#3 MarieC

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Posted 10 September 2013 - 02:21 PM

Hi rissa, thank you for answering, I have been getting the swollen ankles and puffy eyes just in the past week or so, and I am just beginning to take this pill since Aug 15, 2013.    I try to drink as much as I can during the day, but cannot seem to urinate much, something is holding my water back.  Am making an appt with my primary to see if she can schedule a cat scan or ultra sound of the bladder.  I also am due for a kidney check to, so I am being kept back for some reason in urinating,  Hope this all works out for me, and if the puffy eyes get better later on, great, I have something to look forward to.

Thanks again

MarieC



#4 Susan61

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Posted 10 September 2013 - 03:01 PM

Hi Marie:  I have been on Gleevec for 13 years.  I get those puffy eyes everyday. I have watched my salt intake etc.

If I have something with too much salt, I get the swollen ankles.  Rissa is right in telling you to drink lots of fluids.  You need to flush the kidneys out.  I do not drink enough water each day, and it has effected my kidneys over the course of all these years.  Your not on the Gleevec that long.  It should get better.  Do you have a kidney problem to begin with?

Get the tests and see what the results are.  Please let us know how things turn out, and we are all here to listen and help whenever we can.

Susan



#5 GerryL

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Posted 10 September 2013 - 06:50 PM

Hi MarieC,

Watch your salt intake as well.

The other two things that add to my fluid retention are heat in summer and when I drink alcohol - I only have one or two glasses of wine a couple of times a week, but an hour or so later my ankles are puffy from it.

I try not to take my fluid tablet too often and usually only take one when I notice my blood pressure has gone up.



#6 pamsouth

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Posted 11 September 2013 - 12:13 AM

Marie,  Been on Gleevec since 2005 also started out on Hydrox for a short time.  My eyes and face swelled up so bad I could barely see.  They don't swell anymore, but it sure left me with baggy eyelids.  I think of having plastic surgery sometimes but at 65 years old and Kidney GFR at stage 3, well I am afraid something might go wrong, infection of something.  I did talk to a plastic surgery, and it takes a long time to heal and you really have to be extremely careful.   I have been on blood pressure meds' and a diuretic since 1997 and I am quite sure that is why my GFR is stage 3, that means the kidney filters are damaged.  I am vitimin D deficient and very low in Vit b12.  My new primary doc has ordered labs for next week to check a lot of other things.  I am probably low on a low of things as the kidneys control a lot of stuff like processing vit D, your electrolytes, thyroid, blood pressure, etc.  I think Kidneys are the main organ.  Most doctors don't seem to worry about it to much as they just seem to slough it off as to "oh you can live on a dialysis"  what kind of answer is that?  AT 65 years old and my life pretty much gone, why would I want to add a dialysis to cancer (CML), dang, most people get infections on the dialysis and it is tricky.  However I lost 35 - 40 lbs and rarely do I take any blood pressure meds or diuretics.  I started taking the blood pressure and diuretics in 1997.  The diuretics weren't given to me for fluid or swelling but as a blood pressure med, lots of docs do that.  two cardio docs warned me not to take them as it is hard on the kidneys unless of course you really need them when your lower legs, ankle, feet swell, which mine have never been swollen, just my hands now then because of arthritis, but after a day they go back down.  I am hoping since I have taken diuretic for sometime now, that my GFR will be better next time.  I don't know if the kidney filter are permanently or temporary damaged.   I also keep a eye on my Creatine, Bun, electrolytes, etc.

PamSouth


PamSouth


#7 MarieC

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Posted 11 September 2013 - 09:07 AM

Susan 61, I did not think I had a kidney problem before, because not urinating for 5 or 6 hrs was normal to me, and I never was a water or any liquid person..  So to me this was normal, until this pill, that is when I noticed that all the water I was drinking was not coming out.  Until the pill wore off around 9 pm since I take the gleevec in the morning w/breakfast. that is when I notice the difference in urination.  In the daytime, when drinking water, I try to go, but just dribble, and that is so frustrating.  I now try to wait for about 3 hrs, and go a little.  During the nite, I get up about every 2 or 3 hrs, and go, and by morning I am just exhausted and drained of all water.   I do drink more water when getting up during the nite to help me not get dehydrated, but I am fighting a losing battle here. One thing I have noticed over the past couple yrs. I no longer have the urge to urinate.   I noticed that a while back, but thought nothing of it, I just go after a few hrs to the bathroom because that is what I am supposed to do.  Got a call in to primary Dr. to see her and discuss this urination issue, waiting to hear back.  One thing about these Drs. your problem is not to important to them they can get as much money out of you as possible.  I am 78 yrs old, and thought my later yrs were going to go smoothly. silly me!

Thanks

Marie



#8 MarieC

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Posted 11 September 2013 - 11:03 AM

Pamsouth, seems like you know your way around all these letters and numbers, that is wonderful, you are aware of what is happening to your body. 

I looked at my blood work and I saw e GFR, and it says 49 for non african amer. (for e GFR african amer.) it says 59. I don't know if that is what your GFR your referring to. My Creatine is 108  and my Bun is 15 as of Sept 6. I don't know if that is good or bad, but until I learn more this is what I see. Congratulations on the loss in weight. I hope your kidney readings will improve since you no longer take a diuretic.   My onc. wanted to give me a diuretic for the swollen ankles, but I said no not until I know what the kidneys are doing. The swelling goes down at night and the next day it starts over again. 

thanks for all the information, and please keep sending and writing, information is what I need, and every little bit of info helps me.

Thanks again'

MarieC



#9 Tom1278

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Posted 14 September 2013 - 05:40 PM

Hi Marie,

The only bloating I get from Gleevec these days is very intermittent abdominal bloating.  When it happens, it is bad.  It is usually because I didn't take my Gleevec with enough of a meal, and is usually associated with diarrhea.

When I first started taking it last year, I felt general bloating occurring.  I read (on here, I believe) that exercise really helps.  So, I now do moderate exercise 3-4 days a week for 30 minutes at a time -- enough to sweat.  It really helped reduce the general Gleevec bloating for me.

Tom


Diagnosed with CML in July 2012 (33 years old)

MMR since March 2015; E453K mutation

600mg Gleevec

 


#10 LivingWellWithCML

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Posted 14 September 2013 - 07:19 PM

Ditto on the exercise.  Each person has limits, but even a short brisk daily walk can make a difference.  A little bit of exercise also helps with the fatigue.  I also get the puffy eyes, and my legs and ankles swell a bit if I am standing for a while - both are Gleevec side effects that I just live with....


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#11 MarieC

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Posted 15 September 2013 - 12:01 PM

OK, a short brisk walk is now on the schedule!  I do not get diarrhea with this pill, I get constipated.  Maybe the exercise will help.

Thanks



#12 GerryL

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Posted 15 September 2013 - 06:11 PM

I think TeddyB reported a similar issue.






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