Weight gain 😩

[macchiato]

I was diagnosed in January 2017, went on imbruvica later that year, and put on 5kg. Went into remission and this year it came back, and on imbruvica again. I’ve put on 8kg and considering stopping treatment for a few months because honestly i’ve never been as heavy as I am now (almost 128kg!!!!) this is ridiculous I always thought I’d lose weight but no here I am fat and gross.

[Ironj]

So that’s 282 lb . Is that a typical side effect

[macchiato in reply to Ironj]

i’m not sure it’s typical, but from what I understand some people will lose weight and some will put on, i said to my haematologist that I want a “refund” i was expecting to lose

[Ironj in reply to macchiato]

Lol that’s discouraging, but if it works I would say I’ll take the weight gain and get on the treadmill 😊

[Eric_68]

Hi Machiato

Speak to a Dietitian, I did when I found out about my CLL, when I get to medication I will be looking at diet again

It could be just that your metabolism is slowing down, a natural thing for all of us as we age.

Hope your second round treatment goes well also

[macchiato in reply to Eric_68]

great idea, I will do that! I think I probably still eat like i’m 18, but at 46 it’s not the best, thanks

[Jm954 Administrator]

I put on 10kg quickly on Ibrutinib and rapid weight gain is a listed side effect. It is possible to lose it but I found I had to be very much stricter with myself than with other weight loss plans.

Good luck, you'll feel better if you lose it as I did.

[johnl]

I started ibrutinib 2+mos ago put on about 10lbs , but I had lost that much before starting ibrutinib. So I don't know if the Ibrutinib caused me to gain lbs or I just gained back what the CLL caused me to lose. Anyway I'm keeping an eye on it so it doesn't get to be to much.

john

[migirlusa]

I feel your pain. I told the doctor of all the darn (I didn’t say darn) symptoms I could have why did I get everything but the weight loss? So I’m back to weight watchers trying to get to a comfortable weight.

Good luck.

Pam

[Rt2000]

I am concerned that you stopped ibrutunib after such a short time and then started again. And now are considering stopping again. You are suppose to continue taking ibrutinib to be effective. You put yourself at risk by doing these interruptions. Are you seeing a CLL specialist?

[mgh348]

I have been on acalabrutinib for 2 years and had to reduce my carb intake to avoid weight gain and lose the few I was gaining. I eat protein, lots of low starch veggies, and good fats, no sugar, grains or potatoes. I have learned to bake with almond and coconut flours, erythritol and stevia sweeteners, and don't miss conventional processed foods at all. I'm no longer prediabetic.

[PaulaS Volunteer]

Hi Macchiata,

As you say, some folk gain weight on Ibrutinib and some lose it. I lost weight, due to nausea and loss of appetite. Clothes gone baggy and face looks drawn and gaunt. Been a year on Ibrutinib now and my weight is stable , but only thanks to the extra cake and ice cream I'm eating (which isn't as much fun as it sounds).

I do sympathise with folk like you who gain weight with Ibru though. My husband is hungry most of the time due to another medication he's on (not CLL related), and I know how he struggles to keep his weight down.

You say you're thinking of stopping treatment for a few months, because of the weight problem. As @Rt2000 has said above, I'd be very wary of doing this, especially as you haven't been on ibrutinib very long and have already stopped once and seen the CLL come back. Maybe you could talk with your doctor about possibly reducing your dose of Ibrutinib, as you seem to have responded to it very well.

Best wishes,

Paula