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weight gain on sprycel


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#1 clancydog

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Posted 12 April 2011 - 12:36 PM

hi..

i hope all is well and you all are managing on this interesting cml ride.

i know i have posted about hair loss and now i am asking about weight gain.

it seems i have gained 13 lbs  in the last few months..has anyone else had this experience on sprycel ???

my endocrinoligist thinks we might have to adjust my thyroid meds ( i have hypothyroidism and my T3 seems to be low) ..it's just hard to know if these side affects are from the drug or symptoms of something else ?? it seems that some people can manage if their T3 is low and others need their thyroid meds adjusted..i don't want to adjust my thyroid meds if these issues are because of sprycel.

i also am experiencing extremely dry skin and fatigue.

i appreciate your help !!!

best,

ingrid



#2 hannibellemo

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Posted 12 April 2011 - 02:17 PM

Ingid,

My experience was the exact opposite. I felt so rotten for the first few months on Sprycel I lost weight. I have, unfortunately gained some of it back since then.

I can relate to the dry skin absolutely. I use hand lotion constantly, right now I'm using Norwegian Formula. I use body lotion everyday because it has my sunscreen in it, too. Nothing fancy, I get it at Target.

It sounds like you are being followed closely by your endocrinologist and that is good because our TKIs can affect thyroid function. I have it checked once a year.

Good luck.

Pat


Pat

 

"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>


#3 Guest_billronm_*

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Posted 12 April 2011 - 05:57 PM

Dear Ingrid,

When I went off Gleevac I lost 6 pounds in 3 weeks. I had no appetite on G but I couldn't lose weight. I was off G 5 weeks then went on 100mg of Sprycel my weight has stayed the same but I do have to take a diuretic every day. These last 3 weeks I started to get my appetite back I can tell I've gained a couple pounds but I don't blame Sprycel I  have just been eating more. I don't do scales unless their broke. I'll find out at my appt. April 26 but I'm sure it's not much. I really have a problem with water retention. If I don't take a water pill every day in the morning my hands are so swollen I can't make a fist or take my rings off I take my pill and a few hours later my rings are to loose.

You might want to check into that fluid retention is a big problem with Sprycel.  I am always tired too.

                                                                             Good Luck  Billie



#4 mck_001

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Posted 13 April 2011 - 07:40 AM

My weight fluctuates. I think it's fluid-retention related.  When I was on the full dose of Sprycel, I lost a lot of weight and when I had to stop, I lost even more (not quite 10 more pounds)...I'm guessing that the weight I lost on my TKI break was fluid.  On a lower dose of Sprycel, I've gained about 10 pounds and am still weighing about 15-20 pounds less than I weighed before diagnosis, but part of that, I really think is I've become pretty conscious of what I eat and don't eat.



#5 clancydog

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Posted 13 April 2011 - 09:37 AM

wow.thanks for your responses..we all seem so different.

i will take a dieuretic for a week and see if it helps.

i eat really well , no sugar ,dairy or wheat. just lots of veggie and lean protein so i am not gaining from what i am ingesting.

my naturopath has me on flax and fish oil for the dry skin ..i'll let you know if it helps.

best,

ingrid

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#6 Marnie

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Posted 13 April 2011 - 09:51 PM

Hi, Ingrid. . .

I was getting really frustrated with my weight, and maybe you've given me the answer.  I've always been a very fit and pretty thin person.  While on Gleevec, my weight was pretty steady at 118 to 120 pounds.  Now, suddenly I'm up about 6 pounds and it just won't come off.  I know that doesn't sound like a lot, but for my size, that's enough weight that I can hardly fit into any of my pants!!   I've been eating carrot sticks for 2 weeks now, and I can at least button a FEW pairs of pants!  I hadn't even though about Sprycel being the villain. . .

Marnie



#7 lala

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Posted 13 April 2011 - 10:09 PM

Hi---how about 30+ pounds on Gleevec!!!!!  not kidding!  5 years = 30 pounds.........started with almost 9 months in bed/couch, really not over-eating----just eating a bagel every night for dinner ---too tired to make anything else.....the perfect storm:  cml at 49/menopause.......to this day, my daughter and I often say:  I do NOT eat enough to be this big!  I, too, used to be a thin lady---NO MORE!!!  That is what deep fatigue can do.......and I am sure the extra weight makes me tired, too!!!!!!!!!!!  uggggggg......



#8 Susan61

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Posted 13 April 2011 - 10:53 PM

With response to weight gain.  I gained a lot of weight with Gleevec, even when I went through periods of no appetite.  Unfortunately, I do not have a problem with no appetite.  I tryed very hard to lose weight, and did not succeed.  Then I went into an emotional eating pattern which just added more to my existing weight problem.  Now I have been trying to lose again, but I did notice I only lose when I hardly eat anything.  I get frustrated and just go off the diet again.

I am jumping all around with the weight with no happy medium.  I am always open to suggestions from anyone.



#9 Guest_billronm_*

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Posted 13 April 2011 - 10:55 PM

Hi Ingrid,

UGGGGHHH! hate having our weight go up and down and up and down, Men don't seem to have that much problem. I was 5'3 and tried to stay around 120. Now I'm 5'2 and now I' m lucky if I can stay around 135. I shrunk an inch my feet grew a half size I have a short body which seems to be getting shorter and wider but I still have long thin 32 inch legs. My hubby is 6'1 and he has 32 inch legs. I am deformed and I am going to run away and join the circus!

                                                Good Luck I think fatigue is our biggest problem I have to take a nap after I put my running shoes on!    lol Billie



#10 clancydog

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Posted 14 April 2011 - 12:51 PM

i know..the weight fluctuating is hard !!

i am as well ,short and small boned so 13 lbs on me is alot and  nothing fits .. i am also an actor so i'm trying to keep it all together physically here in my early forties ! i am so grateful to be alive and well with a sweet 15 month old baby and husband  i am blessed to probably grow old with ...but day to day is a bit tricky as we manage these side affects that continue to come up.

i must keep perspective perspective perspective .

blessings and good wishes !!






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