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[26thCI]

Hi, diagnosed with CLL in 2013, no symptoms, surveillance (aka W&W) until Aug 2019. By then, had large node growths on neck and had repeated eye infections, despite taking strong antibiotics. Started Ibrutinib. In the months since, I've gain 15 pounds. None of the research I'd done indicated weight gain as a side effect. Talked to oncologist last month who stated that recent research has shown that the drug can cause weight gain. Despite daily exercise, eating nutrient dense foods, cutting out sugar, dairy, wheat, alcohol and processed foods, no change in weight. Good news is I FEEL good, but frustrated. Anyone else experience this? Thx and grateful I found this group.

[Newdawn Administrator]

Welcome and hello 26thCI,

Sadly many of us have experienced the weight gain associated with Ibrutinib and it’s becoming more recognised as a side effect. I initially lost weight when I started treatment a year ago but gradually it piled back on plus another 14 lbs! It’s very frustrating I agree. Importantly you feel good despite the frustration of not being able to lose the unwanted pounds.

Is the Ibrutinib taming the CLL?

Best wishes,

Newdawn

[Sushibruno in reply to Newdawn]

Hi Newdawn, do u know if acalabrutinib also cause weight gain?

[Newdawn Administrator in reply to Sushibruno]

I don’t know to be honest Sushi but I’m sure others who take it will comment.

Newdawn

[Sushibruno in reply to Newdawn]

Thanks for the prompt response😊.

[AussieNeil Partner Administrator in reply to Sushibruno]

No weight gain in my case

[Sushibruno in reply to AussieNeil]

Thank you Neil,

[Sushibruno in reply to AussieNeil]

😊

[bayside64 in reply to Sushibruno]

my oncologist said I will lose weight with Acalabrutinib.

[Sushibruno in reply to bayside64]

Hi bayside64 are you taking them, if so how long have you been on them?

[bayside64 in reply to Sushibruno]

I just started Allupurinol while waiting to start Acalabrutinib. It will be soon and I will be anxious about it.

[Sushibruno in reply to bayside64]

I understand im in the same boat.... it's really scary at first taking meds for something we want to go away forever but that's not the case unfortunately. I really wish there was a cure. I hate this disease with all my soul... I'm sorry im just pouring out what's in my heart 😢.

[bayside64 in reply to Sushibruno]

I am concerned about treatment. I would much rather continue on W & W but I am grateful there are many choices for us that will help us. My mother and brother both had CLL. Are you in the US? And when will you start Acalabrutinib? We can “compare notes. “

[Sushibruno in reply to bayside64]

We'haven't discussed treatment yet, im in NY. I think im really saddened by the fact that treatment is nearing and I also wanted to be on w@w for many years but I guess we can't choose that, unfortunately.

[bayside64 in reply to Sushibruno]

How long are you on W & W? For me, it's been 5 years.

[Sushibruno in reply to bayside64]

2 and half years. I wish I' could've gotten at least 5😡 it makes me very upset.

[Dawn-Marie in reply to Newdawn]

Hi Newdawn, I had my 6 month check up wbc 29.6 all other labs were ok. But the wbc had doubled. How long before treatment might start? I was dx 2017 and have been on watch and wait.

[Newdawn Administrator in reply to Dawn-Marie]

Hi Dawn-Marie,

Maybe best to start your own post with a little more detail, specifically your ALC (absolute lymphocyte count), any symptoms etc.

Regards,

Newdawn

[Dawn-Marie in reply to Newdawn]

Thank you

[JigFettler Volunteer]

Welcome to our Forum!

Jig

[avalon2]

Never was told about weight gain. At first I lost weight which was good. Drank alot of water and nothing else. Cut back on snacks. I don't know if that was the reason but when my labs got good I went back to my old ways and put on 10 lbs. in 3 months. Starting over to see if its the diet.