Anybody is gaining weight on acalabrutinib?

[Belkin123]

I am on acalabrutinib for 16 months. All my numbers are improved significantly, spleen also decreased in size , but still palpable. No side effects, but I am gaining weight, even though I eat healthy and much less than before. I gained 10 pounds since starting treatment, mainly on my belly. I am wondering if acalabrutinib can be a contributor. I would appreciate any feedback.

[Eucalyptus22]

Yes. I've put weight on and so now having to be careful what I eat in terms of portion size. At the start of treatment I was hungry all the time so did eat more. I do also think lack of decent exercise due to shielding is a contributing factor.

[dmmck in reply to Eucalyptus22]

I’ve been on ibrutinib for almost 3 years and have gained almost 10 pounds in spite of eating less, eating healthy, and walking 10,000 steps every day. But my blood tests are all normal now and have been for at least a year. Diana

[Havemercy]

Hi - I am on the UK FLAIR trial and have been taking Ibrutinib ( which I assume is in the same drug class as Acalabrutinib) for three and half years. I have gained about 3.5 kg during that time although my diet is healthy I believe. It seems that weight gain is an accepted side effect -

jnccn360.org/cll/news/weigh...

Best wishes.

[Newdawn Administrator]

Seems to be a common side effect. I gained about 12lbs whilst I was on Ibrutinib but have managed to lose 10 of them since stopping them. I know people who gained a whole lot more even whilst maintaining a similar diet.

Newdawn

[Belkin123]

Thank you, Newdawn and all for replying. I guess it is small price to pay for improved condition in general.

[MajorC in reply to Belkin123]

Well stated. Continued improving health.

[Vizilo]

Hi,

I’ve been on Acalabrutinib roughly the same time as you and am about as young as you. My weight has stayed roughly the same and my meals are sort of healthy. I don’t eat meat and have been on an interval diet (only eat during an 8 hour period during the day) but I do love ice cream, potatoes and bread. However, I try to burn that off with 30-60 minutes of fairly strenuous exercise per day.

I know that our metabolism slows as we age no matter what we do but I suspect, like with everything to do with cll, our paths and results are all different.

Have a great day!!

[Belkin123 in reply to Vizilo]

Thank you for sharing. Feel better.

[Newdawn Administrator]

You may find this article on the subject useful and it confirms your observation (although it mainly addresses Ibrutinib though Acalabrutinib is mentioned;-

‘Our data on significant weight gain while on treatment for ibrutinib are similar to those reported for other BTK inhibitors, including acalabrutinib’

onlinelibrary.wiley.com/doi...

‘We report data supportive of the hypothesis that CLL patients responding to ibrutinib therapy have significant and sustained weight gain. These findings are clinically important because two-thirds of our patients were overweight or obese prior to initiation of ibrutinib therapy. The average 2.4 kg weight gain at 1 year after initiation of ibrutinib is higher than the average weight gain over 4 years in the US population, and higher than the 2.25 kg weight gain reported to be associated with an increased risk of cardiovascular disease in the Framingham study.’

Newdawn

[Belkin123 in reply to Newdawn]

Thank you, Newdawn, for forwarding this article. It is not the appearance, which does not matter anymore, but I am afraid of becoming diabetic and my thyroid function is also decreasing. I guess it is a trade we have to accept. Thanks again and I wish you a stable recovery..

[kitchengardener2]

I am also taking Acalabrutinib and have been doing so since September 2021. My weight, which I try to keep under control, went up a bit over the Christmas period but that was due all the extra goodies. I put on about half a stone. I have managed to lose three pounds during January now that I am back on my normal diet. My hubby and I are Slimming World members and are long time target members. I lost over four stones in the beginning to get to target and I most certainly don't want to put that back on. Our diet is not a 'fad' diet and is really healthy, we eat a good selection of colourful vegetables, lean meat and fish. We love soups and make our own every week from leftovers and what we call 'bottom of the fridge ' soup, where the limpy vegetables are turned into soup. We use all our vegetable cooking water for stock. Bread, particularly good bread has always been my downfall and so is now a real treat. We used to swim every day pre covid but don't dare to go back to the pool yet but we try to walk about 3 miles each day and get other exercise in garden. Shielding whilst not nice didn't really stop us walking, we are lucky enough to live on the east coast which is so beautiful and we find isolated spots to walk. We do miss our overseas trips though and long for some sunshine, we generally went away for long periods during the English winters, I really don't like cold damp weather!Stay safe everyone and if a little extra weight is all we have to worry about in exchange for better health, so be it.

[flyhigher]

Yes, on acalabrutinib since Sept 2020, I've put on a stone over a year and simply cannot shift it. Some years ago long before my CLL was discovered, I lost a lot of weight (five stone, deliberately, back to a sylph-like, it was lots of hard work, much slimline tonic, and far too much rabbit food). I see that a sympton of CLL can be weight loss; and this makes me wonder if the CLL 'helped' me lose some weight that is now coming back on again. Which makes getting back to where I want it again just so much harder.

Lately (last nine months or so), walking seems to have had far less effect than previously. Then I had my 'one-pound' walk (1 hr 30m) my 'two-pound' walk (2h) and even my 'four-pound walk (4hr - you don't do that every day!). Now, those yardsticks are just not met.

My new year resolution for 2022 is to 'shift that stone'. Somehow.

[cll2013]

I have gained 8# since starting Acalabrutinib/Calquence in September 2021. The same thing happened a couple years ago when I was taking Ibrutinib. I had to stop the Ibrutinib due to afib and I lost 10#. If memory serves me right, in the "not so common " column of the Ibrutinib paper enclosed with the pills were the words "may cause weight gain."

[BallyB]

I have gained 6-8 pounds since starting acalabrutinib. It could be the drug or covid isolation or both.

[SERVrider]

My weight hovered around 85kg but then dropped to around 75kg without any action on my part. I started Acalabrutinib on June 2020 and now my weight has risen to 88.7kg. I had put it down to lack of exercise due to Covid, cold weather and general idleness but the BTK inhibitor might well also have had an effect. At least, I can now claim "it's the medication" and not the couch-potato level of activity!

[WarriorPrincess4]

Yes. I am on Zanubrutinib for more than three years now and have also put on 3 kilos. Normally I never have a problem with my weight but sinds treatment I do have to watch what I eat. Last year I started with intermittent fasting and this improved my health overall. I not only lost the extra pounds, my blood pressure stabilised as well. 😃

[Belkin123]

Intermittent fasting? Good advice, thanks.

[Waligunda]

As Dr. Kipps (CLL specialist UCSD, USA) put it, when I complained about weight gain while being treated with Acalabrutinib: "Think of it as getting rid of a tapeworm." So, basically since the cancer cells don't deprive our bodies of nutrition any more, we gain weight.🤣

[AR0613]

Hello,

I’ve been taking part in the Flair trial (I & V) for nearly 2 1/2 years, reduced dose, and have gained about 1 1/2 stone despite eating healthily as I did before. Mind you, prior to starting treatment I lost 5 stone with Slimming World and looking back I believe that my CLL was probably contributing to my weight loss! I’m anxious not to continue to gain weight however but I’m struggling to shift the extra pounds. 😏

[Belkin123 in reply to AR0613]

Sorry, what is stone here? Is it kilo or a pound or something else? I am from Russia, can not figure…

[Newdawn Administrator in reply to Belkin123]

A stone is 14 lbs.

Newdawn

[Belkin123 in reply to Newdawn]

Many thanks😂 it is plenty…

[MiaZenny]

I have been on Acalabrutinib for lymphoma since the start of its trial in 2015. I immediately started gaining weight and have fought diligently to get the weight off for the past 8 years. I'm only about 15 pounds heavier than I was 8 years ago, but I'm constantly dieting, and so hungry all the time. But I'll take it, since it's the only side effect and I'm alive!

[Mochaholic]

Hi Belkin123,Yes. Been on it for 4 months and gained 6kg!

I'm 58, and guess I'll need a special exercise regime if and when I end my usage, but it is reducing my WBC.

[Justasheet1 in reply to Mochaholic]

Mochaholic,

Do you think it could be something else like maybe……. Mocha? 🧐

Jeff 😉

[Mochaholic in reply to Justasheet1]

No! 😊 I don't drink it anymore. But I did for 5 years prior to starting Acalabrutinib and never gained an ounce. Thanks for making me smile Justasheet1.