Ibrutinib and Weight Gain: For those of you on... - CLL Support

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Ibrutinib and Weight Gain

KevinCLLITP profile image
10 Replies

For those of you on Ibrutinib for 6 months to a couple of years how has your weight fluctuates. I am up 11 pounds in 6 months with no change in intake or activity.

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KevinCLLITP
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10 Replies
PlanetaryKim profile image
PlanetaryKim

My weight is up and I can't lose it. Never happened to me before in my life. I've always been skinny my whole life. Now I've got some extra pounds that are staying put. I think it's the ibrutinib. This is not normally the way my body works.

Havemercy profile image
Havemercy

I've put in about 3 Kg in the 15 months on Ibrutinib. My consultant says it is a known side effect of this medication.

JigFettler profile image
JigFettlerVolunteer

Hi Kevin.

Always tricky this weight thing, important be it up or down.

Once we have CLL and on a drug like Ibritinib our life pace changes. So does our usage of energy. Inexorably.

Don't forget other stuff like thyroid function etc.

1 lb of adipose tissue contains 3500 calories.

FCR pushed me up 13kg. Down 7kg so far.

The specifics of Ibritinib I will leave to those who take it! 😉

Best wishes

Jig

BeckyLUSA profile image
BeckyLUSA

I have GI side effects from it, so I have continued to lose weight.

BeckyL USA

Elizabetha profile image
Elizabetha

I have gained 12lbs since I started Ibrutinib and cannot shift it. Drs not concerned, "better to gain than lose" . They are correct however it's a worry for me since I have struggled with my weight forever.😕

Trish67 profile image
Trish67

I’ve been on Ibrutinib and Venetoclax for 14 months and I have gained about 8 lbs in the last 6 months. I definitely haven’t changed my diet or my exercise. I walk miles each day with my Cockerpoo. It’s not currently a concern as I had lost some weight before starting the trial but I’m hoping not to put on much more. 🤞

NooNoo14 profile image
NooNoo14

After starting Ibrutinib in March 2018, I find it very hard to eat a healthy diet as fruit, salad and vegetables tend to upset my stomach. I miss them so can't wait to stop taking it.

Netty

BeckyLUSA profile image
BeckyLUSA in reply toNooNoo14

Right there with you Netty!

Newdawn profile image
NewdawnAdministrator

I find I’m the only one in the haematology Day Unit who is gaining weight. Everyone is complaining about lack of appetite and feeling cold. As much as I value Ibrutinib and it’s efficacy, I really wish it didn’t lead to a tendency towards weight gain! 😏

My diet hasn’t changed but my weight is creeping up and I hate it!

Newdawn

deesil profile image
deesil

I have been on Imbruvica for four years and recently have gained 12 pounds with no change in diet or exercise; I currently eat about 1/4 of what I used to eat and cannot lose weight. I eat mostly salads with green leafy veggies, a few cucumbers , tomatoes, etc., and 80 calories worth of dressing. I cannot lose weight and recently had to buy some new pants as the old ones no longer fit. I hope I don't gain much more as I cannot afford a whole new wardrobe!

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