Weight Gain Acalabrutinib?

[spanish36]

Hi Fellow Acalabrutinib Friends

Since beginning to participate in a Acalabrutinib clinical trial several months ago, I have experienced a slow but steady increase in weight.

I have cut back on calorie intake and exercised more, yet my weight continues to increase?

All advice welcome. Thanks

[Vizilo]

I started Acalabrutinib about a year ago and have tracked my weight on a regular basis. My weight in that period has varied only 2-3 pounds up or down. I do exercise daily (indoor rowing or biking), long walks with baby girl (our standard poodle) and try to watch what I eat. I do notice, however, that I am a lot hungrier since starting Acalabrutinib and have to fight the urge for midnight snacks🤐

My friends, who do not have cll, have also reported weight gains. This might be a combination of inactivity/boredom with COVID or a function of your age. I don’t know your age but once you hit your 60’s it becomes more of a struggle.

[Wetumpka in reply to Vizilo]

I have little appetite and have lost weight. Am trying to gain weight. However this is not due to Calquence. I have other problems!

[spanish36 in reply to Wetumpka]

Hi Wetumpka

Yes, I also experienced loss of appetite and weight loss during my early months taking Acalabrutinib.

In my case my weight stabilised back to normal in around month four.

My first months were not pleasant. However I decided to hang in there with my twice daily Acalabrutinib capsules and 20 months later am really glad I did.

Other than an occasional early morning headache; 5 am sort of time, I have NO adverse CLL symptoms.

No night sweats. No daily fatigue and no exhaustion. No nausea. Etc. For me Acalabrutinib has worked wonders witb minimal side effects AFTER the first 3 or 4 months.

I just have to solve my unexplained steady increase in weight and get back to normal weight.

I wish you similar success with Acalabrutinib.

Thanks.

[spanish36 in reply to Vizilo]

Thanks Vizilo

I'm in my 70s. Prior to commencing Acalabrutinib 20 months ago my weight remained a consistent 80 kg. Only 2 kg above my recommended weight. I have always monitored my weight, and been active. Kayacking, long walks, stretching exercises, etc.

My weight began its steady climb after around month seven on Acalabrutinib. I responded with reducing food intake, even eliminating lunch entirely.

Due to a developing heart condition my exercise is reduced, although not dramatically enough to explain a 12 kg weight gain when my food intake was substantially reduced?

I await a reply from my clinical trial Doctor.

I am delighted with the continued decline of my CLL thanks to Acalabrutinib and wont be stopping.

I just need to arrest and reduce my weight increase before that causes other problems.

All the best for your own Acalabrutinib journey. Thanks

[kitchengardener2]

I am a relative newbie with Acalabrutinib. I started treatment in August 2021. So far I have no side effects and wonderful results from the Acalabrutinib. I am aware that I have gained a little weight in spite of being careful with what I eat generally. But and it is a but! I am conscious that we have perhaps more biscuits than is good for us with our morning coffee. Our general diet is a very Mediterranean style diet with lots of fresh vegetables, fish and lean meat. It's not just my weight, my hubby has also gained weight. This makes me think that it's not all down to the Acalabrutinib.

[spanish36 in reply to kitchengardener2]

Thanks

[LeoPa]

Try to eliminate most carbohydrates from your diet. Only eat meat , vegetables and eggs. The pills are likely messing with your hormones. If you manage to stick to the above diet then your appetite should drop and along with it your weight too.

[spanish36 in reply to LeoPa]

Thanks. My diet consists of fish, some meat, salads and lots of veggies. I dont have lunch as never feel hungry enough.I never dine out thanks to covid. No take away for a year or so. Half an hour of exercise daily.

And still my weight increases slowly and steadily.

Thanks for your reply

[LeoPa in reply to spanish36]

Wow, that's amazing as you seem to be doing everything correctly. Is it adipose tissue that you are gaining? Scales lie sometimes. Muscle gain shows as weight gain too. Are there seasonings on the salads you could drop? Carbs could be hidden in those.

[spanish36 in reply to LeoPa]

Hi LeoPa

No, its weight going on around my middle! Shirts a bit stretched which has never been the case before 2022?

Breakfast is bran and low fat milk. One slice toast without spread with vegemite.

Lunch is "no lunch".

Evening meal usually salad and fish or baked chicken breast. Once a week a steak. Or steamed veggies instead of salad . Never any desserts.

Add small amount of tomato sauce or a low calorie salad dressing.

Half an hour of stretching and light weight exercise followed by a brisk walk daily.

It really is a puzzle.

Thanks for your interest.

[LeoPa in reply to spanish36]

Hi! It looks like you might need to take it to the extreme. No bran, no toast no skim milk. Nothing but meat and steamed veggies. By meat I mean fish, oysters ,fowl and whatnot too. I'm not sure that would be worth the pain. Because such a diet is definitely a pain in the butt 😀. Good luck!

[spanish36 in reply to LeoPa]

Ha ha yes no food intake at all solves weight concerns.

I will get it sorted. Thanks.

[LeoPa in reply to spanish36]

Meat and veggies are not really NO FOOD but such a diet may feel like it

[OTBCdave]

I too have gained weight on Acalabrutnib. I started treatment in May 2021 at which point I had been losing weight steadily for a few months so I was around 5 or 6 pounds below my long term average. I regained that weight over the first few months of treatment and I now weight around 8 pounds over the average. I haven’t changed my diet or the amount that I eat and I don’t snack. Also I am pretty active with walking and gardening, again no change on prior years.Dave

[spanish36 in reply to OTBCdave]

Thanks OTBCdave. Yes an almost identical weight increase to me.

I have received similar weight gain stories from other Acalabrutinibbers.

My Clinical Trial Doctor just replied to my concerns telling me she knows of only one other case of weight gain so my gain is not due to Acalabrutinib?

Hmmmm in view of other replies I find her conclusion perhaps not valid.

[OTBCdave in reply to spanish36]

I saw my CLL consultant yesterday. His take on my weight loss/gain was that prior to treatment the effects of the cancer tend to depress our weight. As we respond to treatment this effect is reversed and we then tend to put on weight even if our diet and exercise regime is unchanged. Dave

[spanish36 in reply to OTBCdave]

Thanks Dave. Yes that makes good sense. My CLL consultant provided no possible answers to my ongoing gain in weight.

Simply suggested I look at my lifestyle.

I will up my exercise regime which is limited due to another health problem.

And reduce my food intake. Although that is already minimal already.

Ah well I cant complain as the Acalabrutinib has made life in other ways much improved.

Thanks.

[Me2AsWell]

Me too - I am struggling with this weight gain problem since starting Alcabrutinib last summer. Aggravating but tolerable give the alternative!

[spanish36 in reply to Me2AsWell]

Thanks. Several others also replied stating weight gain problems. It seems the Acalabrutinib might be the weight gain culprit and yet my medical advisor says its not?

Now how to control this unwanted weight gain as my Acalabrutinib is doing a great job and I wont stop treatment.

Thanks.

[kitchengardener2 in reply to spanish36]

I have stayed the same this week but still about 3lbs more than I would like. So this week an experiment, I will go back to a basic starting point with my Slimming World and write down everything I eat before I eat it. This makes you aware and it sort of makes you more aware of the odd biscuit. By the time you have written it down, often the craving has gone. I have to do something, I have no 'fat' clothes to fall back on!!

[spanish36 in reply to kitchengardener2]

Likewise Kitchengardener2. Thanks for your reply. My diet is consistent. Less input than a year ago. No dining out thanks to covid. No take away for a year or more. Never any desserts after a healthy small evening meal. Actually never all that hungry.

Half an hour exercise daily followed by a brisk walk.

And my weight slowly increases.

Thanks.

[flyhigher]

Yes. Started Acalabrutib in Sep 2020, weight stayed steady for about a year and started a slow climb of at least one stone. I hoping it's plateaued now. My theory (my Consultant didn't poo-pooh it, so it must be right!) is that this is CLL-caused weightloss being reversed - in words the meds are working. Yeah true maybe - but my diet and exercise regime now isn't working. Oh well, must try harder.

[spanish36 in reply to flyhigher]

Thanks. Unfortunately my weight climbs higher each month. 84 kg when I started the clinical trial 20 months ago. Today 93 kg!! I eat less but put on more weight?

Prior to beginning Acalabrutinib my weight sat between 82 to 84 kg year after year.

Thanks for your information

[SLLJOHN]

I am coming to the conclusion that Alcalabrutinib after a year of taking the drug is the culprit for my 12 lb weight gain….originally I was less active due to aching limb side effect but I have overcome that and pushed myself on the exercise!

[spanish36 in reply to SLLJOHN]

Thanks very much. Your experience with weight increase matches mine. It seems from replies I received that many other Acalabrutinibbers also have a weight gain concern.

And yet my medical advisor just emailed that they are only aware of one other weight gain person therefore its not due to the Acalabrutinib.

Apparently her conclusion might not be valid?

Thanks

[StayingUpbeat in reply to spanish36]

Just now getting on this thread - maybe your medical adviser needs to read this thread I have gained about 15 pounds in the last year since beginning Calquence and, like you, eat healthy meals, am active...I'm doing all the right things. My WBC are now in the normal range yet my lymphocytes are still a bit high. I guess I take some comfort in many folks having this same issue. Thanks for sharing your journey!

[spanish36 in reply to StayingUpbeat]

Thanks StayingUpbeat

Your weight gain is yet another real life example of unexplained weight gain for many of us taking Acalabrutinib or similar, to combat our CLL , for several months and longer.

My weight remains at my highest level in my life. To date all my efforts to lose my weight gain have failed other than for a few days pre Xmas 2022. See below.

I particularly note my expanded tummy which I never used to have prior to taking Acalabrutinib? And I am not a beer drinker by the way!

I also have heart failure and these unwanted kilos are not helping that condition one iota. My CLL consultant offers no suggestions concerning my obvious weight gain during my reviews. Probably thinks I dine on Big Macs every day.

The truth is the direct opposite. No fast food. No desserts. Rarely any lunch. Tiny breakfast of allbran. Even my slice of toast has gone. And a small portion of either a steak, chicken or fish with steamed veggies or salad. No dessert and no snacking.

An occasional but rare dining out with friends every couple of months!

Now over the Christmas week I did let down my guard which resulted in an immediate two kilogram weight gain!

Post new year I'm back to eating like a sparrow to combat the sudden new weight gain.

I do a half hour exercising daily, lots of gardening and other physical activity. I would do more but my heart failure restricts my ambition.

Lots of people kindly responded earlier with suggestions to eliminate this or that food from my already limited intake .

Thanks but I suspect my already careful food selection might not be the root cause of my weight gain situation if others on similar CLL treatment are experiencing a similar weight gain predicament?

I am not knocking Acalabrutinib as it has worked wonders for me. I simply have to rid myself of these unwanted kilos and perhaps Acalabrutinib is linked?

I acknowledge that the gradual reduction of CLL in my system and becoming healthier might be a contributor to my weight gain. If such is the case how do I stop my weight gain short of living on water? Now theirs an idea:))

By the way I have now clocked up 30 cycles in the Calquence trial with excellent results as relates to my CLL. Thanks Calquence.

[Arro]

Hello all, I too gained weight while taking calquence and I figured it was my spleen was going back to normal size, and allowed me to actually eat normal meals. When my spleen was swollen with the CLL before taking calquence, I could only eat tiny amounts of food which allowed for weight loss.

[spanish36 in reply to Arro]

Thanks.

[ferne]

urmc.rochester.edu/news/sto...

I felt validated about my weight gain when I read this article. In essence it makes some of us want more food while we need less. It also seemed to cause an increase in belly fat for me. I had been on Acalabrutinib and now on Zanubrutinib, doing very well.