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CLL Support Association
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Does weight gain tendencies go along with Imbruvica?

Just wondering if weight gain tendencies go along with Imbruvica....I find myself struggling more to hold the line then I did before Imbruvica. I am actually hungry. I currently don’t have a weight issue but then I don’t want one either. By the same token has anyone had issue with their weight going the other way by loosing becoming an issue. Just curious! ☘️☘️☘️

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Hi Panz I can’t say I have had a problem with weight on ibrutinib either way. I do often feel hungrier than before but not too bad I can’t control it.

Ann

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I suddenly dropped 20 lbs prior to treatment which was one of the reasons it was determined I was ready for treatment. Once starting ibrutinib, I regained 5 lbs where I've struggled to hold steady despite no appetite. So I'd say I've had weight fluctuations with CLL and ibrutinib, but not unwanted weight gain.

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Before I had uncontrollable weight loss. With the Imbruvica I have gained it all back and More. But it just means you are healthy. It give a huge appetite and slows down metabolism. Hard to control but better than the alternative.

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Yes, I am embarrassed to say it has been a problem. Prior to treatment I lost about four stone. Great I needed to. But gradually that has come back and more. I managed to maintain the loss four four years on Ibrutinib but now seven years on I am back to where I was and more. Sadly I cannot lay all this at the door of Ibrutinib, age and a more sedentary life due to two hip operations and a bed ridden wife who requires my attention and more importantly my presence at all times just in case she needs something is more the reason.

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I seem to have gained about 3 kg since starting Ibrutinib back in July last year. Probably a side effect of the drug as I have given up alcohol - virtually never eat cakes or biscuits and generally am careful. The consultant says the drug is to blame so I've just got to be extra careful. Not everyone will gain weight and I am still pleased with the outcome as far as my now normal range bloods are concerned!

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Before treatment I lost about 18 lb & then after a month of weekly rituxan IVs & revlimid, I lost another 17 lb. Two months later, I was switched to ibrutinib, and I gained about 1/2 of my weight loss back. Now after almost 5 yrs. on ibrutinib, my weight continues to be steady.

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I've gained about 15 lbs since I was diagnosed with CLL. I am on Ibrutinib going on 2 years now. To be perfectly honest I believe I just started enjoying food and life again and stopped restricting my self when my tests began coming back to normal and I began feeling good.

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I really believe you have something there and I simply must excerise a little willpower. I have gotten my weight where I want it and where I feel so good. I have a mild case of aorta stenosis and feel it very important to keep my weight in check. Thank you for sharing! 🌻

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I have been on Ibrutinib for 8 months and have gained about 6kg in the last 4 months which puts me a little over my ideal weight. I put this down to feeling healthier, an increased appetite and an ability to eat relatively normally now that my enlarged spleen has returned to its normal size. The fact that I have a severely arthritic ankle and knee which is very limiting when it comes to any form of exercise obviously does not help. A conscious effort to reduce calorie intake has stabilised and started to reduce the weight gain so it is not a major problem.

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Yes, I've been on Ibrutinib for 10 months and have gained some weight. It seems like I'm hungry much of the time!

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I've gained almost 17# in the 2 1/2 years on Ibrutinib. I watch what I eat, including proportions, but nothing helps. Otherwise, no problem with the big "I".

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glad you asked about this and appreciate all the answers. I've been on I for more than 5 years and it seems i'm always hungry. definitely gained around 10 pounds, which is a lot for me. contributing factors are modest level of exercise and a somewhat sedentary lifestyle. however, these notes are definite encouragement for me to exercise a bit more self control as well as more exercise. thanks, everyone.

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