I knew that I was putting weight on and my consultant always seems happy about that. I am being treated with Acalabrutinib which thankfully has done its job. However, this morning I stood on the scales after our holiday. I actually thought I had lost a bit but, oh dear me, more additional weight. I now have at least a stone and a half to lose to get back to my 'normal' for me. I am careful eating (15 years of following Slimming World taught me that), I get plenty of exercise gardening and walking. Pre covid, we were swimming most mornings but I am concerned about infection risks in public pools.
For those of you using Acalabrutinib, have you noticed weight gain, as the drug starts working.?
So I am back to basics, watching all I eat and I will mention the weight gain to my consultant in October.
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How does your consultant react to that? I live with the fact that age makes for a little weight gain but I can't go with this. The thing is my clothes still feel ok but if I go on gaining, they won't!!
Alice I am the same as Ann and put weight on when I started Ibrutinib. It’s down as a side effect and consultants are not interested. Sadly as we age it’s harder to lose that weight.
Thank you, I will try to control and lose using my tried and tested Slimming World books. It's a vicious circle, I obviously want the CLL to be controlled and I want to be healthy. I am only a little person (just over five feet tall) and so excess weight looks and feels dreadful. I am going to email my CNS and ask her advice. I will report back.
I'm the same as you, just over 5ft. I have put the stone on that I lost before treatment but to be fair I haven't been on a diet and have eaten what I want to eat albeit a healthy diet. What I've noticed is an accumulation of fat on my stomach which is dreadful! I really must do better!!
Weight gain seems to be regularly reported with the ‘nibs’ (maybe it’s short for nibbles) but more so Ibrutinib. Weight gain was a real issue for me on Ibrutinib and I only lost it when I stopped those meds. My Consultant took little interest in the issue even though I could not afford to gain weight. Perhaps they’re so used to very sick people losing weight and it being a bad sign!
It’s an issue that’s been discussed a number of times on here. I persevered with the meds because they were taming the CLL but I totally understand how distressing unwanted weight gain can be.
Hi, I was on acalabrutinib and would see my weight up go up a lb or so a week, by the end of the treatment, I had put on 2 stones and still haven't been able to shift it!
Oh goodness. I haven't gained it quite so quickly but nevertheless it has to go. I have been told that I will take Acalabrutinib until it stops working so take that to mean for ever. That being the case, I must control the weight. Are you not taking it now? Thanks for your reply.
My weight hasn’t got up but I have lost my waist (I’ve had to ditch lots of trousers!).
I have had fairly stable weight throughout my life and have been blaming Lockdown snacking for the change in shape but, as I started Acalabrutinib in Lockdown, perhaps that’s the cause?
I too started Acalabrutinib just at the start of Covid19, August 2021. Have just been talking to hubby and we said that bread could be partly to blame. I love 'good ' bread and we have just had two weeks in Spain where I can't resist bread and honey for breakfast. Anyway back home now and a month to our next trip so aiming for 2lbs each week ... I'm on it,be gone fat!! Stay well and safe x
Here's another one who has gained weight on Acalabrutinib (over 2 st when I last punished the scales; for some unknown reason I've lost the enthusiasm of regular weighing - probably due to ostrich syndome). My consultant commented something about my thyroid now being a bit over/underactive -no idea whether as a side effect or not - but didn't offer anything in the way of advice or action to alleviate. I guess the only way to counteract this weight gain is severe moderation (less than 1000 cal / day) but I plan to discuss this with my GP when my meds are next up for review. I've found this weight gain really depressing, because I had put so much time and effort into getting to and staying at a 'normal' weight that seems to have come to naught after a couple of years on Acala.
It's a pain isn't it? Hopefully now that I kicked my butt, I can get my brain into action and control it. I think my thyroid was ok, it was checked when I was having checks for AFIB which incidentally couldn't be found!!
Yes Alice, I have noticed a weight gain since starting acalabrutinib at same time as you, I walk about 5 miles most days and also cycle every weekend, but still about 10lb heavier than I was in 2021. Also like you doing well on treatment, but would love to lose a few pounds.
Hi, I'm on V and R as a second line treatment. I had FCR as a first line treatment in 2019. I too attended Slimming World and was under my target weight. I did put on a stone with FCR, mainly due to tiredness and a craving for starchy foods. I find that a low carb diet is much better for me and lost the weight with Michael Moseley' s F800 which I found a much healthier way of eating. I'm now about to have my 6th Rituximab infusion so will be on Venetoclax only for another 18 months. I have felt very exhausted on Rituximab and the weight has piled on again. When the exhaustion subsides I will be following F 800 again. X
Morning Alice, I’ve been on Acala since February and if anything my weight dropped a bit when I started. Had to put some more holes in my belt! It’s pretty level now and and doesn’t change much. I generally keep pretty active and due to my diabetes I keep an eye on the carbs. It’s very difficult though to resist that lovely Spanish food isn’t it 😀
I am on v & o znd after the 5 month I started gaining. I am up 7 Pounds or so and on my 5´ body I feel it. The treatmet is working well thank goodness, but I don´t appreciate the extra weight. Hopefully when I am finished it will "melt" off. In the mean time I will be more conscious of eating less carby foods.
Yes... I am having the same experience with acalabrutinib. I've always struggled to keep enough weight on and have gained about 10 lbs in the last 5-6 months since starting treatment.
I can relate. I am on V and gained nearly 30 lbs over the year. I do eat rather healthy, I’m on a grain free diet, but I feel it has to do with the medicine.
I gained 6-7 pounds but haven’t gained anymore. I think it’s the way the medication affects the cells. I did some research a while back on it. My clothes became tight and I had to give some of my clothes to my sister who always passed her clothes down to me!!! The oncologist nurse thought I shouldn’t be complaining because those that go through chemo and take steroids gain much more weight. She wasn’t very supportive. It does affect out self esteem!!! I readjusted my diet, drink lots of water, walk daily and try to do the best that I can. I guess it’s about acceptance and appreciating that this miracle drug is keeping us alive! Take care!!!
Thank you, you take care too. It's just that after a lifetime of trying to lose weight, I managed it and felt good in nice fitting clothes, I am now so fat again. I am trying to control my eating. I get lots of exercise, I walk and tend a large garden. As you say it could be worse.
Suggestion for inspiration: I just finished the book "For Blood and Money" by Nathan Vardi. The book reads like a novel. It's the story of how Ibrutinib and Acalabrutinib were developed and came to market. It gave me a new appreciation for being able to take the medication and continuing to live a fairly normal life.
I lost weight at first on Pirtobrutinib but started gaining about 4 months in. I am using Noom (an app) again. I had used it in 2020 and got down to a nice weight where I felt comfortable and moved easily.
In Noom, it was suggested that as women age, they tend to lose more muscle than men. Weight training is suggested. This doesn’t require going to the gym but perhaps substituting doing a TeamBodyProject (search on YouTube) twice a week in place of aerobic exercise. Apparently the more muscle we have, the more energy we use.
This is interesting because I started Calquence in November last year and after about 1 month my doctor diagnosed me with a-fib. They changed my blood pressure medicine to a beta blocker (metoprolol) and till now I gained about 15 pounds and I always thought my weight gain was because of that. Beta blockers are “famous” for weight gain and hair loss! So now I don’t know what to think.
I was told that I had AFIB after an accident at home. It was a young junior doctor in A&E and it took 4 months to get a cardiologist appointment, she was convinced that I didn't have a problem. However, because I have varicose veins, she thought that Apixaban (blood thinner) wouldn't do any harm and would prevent blood clots. I was given Bisoprolol originally which created havoc with my pulse rate,after only three days it was dangerously low. It was stopped at once. I haven't noticed any heart irregularities except perhaps I am a bit breathless going up hills. That could also be the weight issue.Take care
That’s what I notice. Whenever I exert myself, especially if it’s hotter, I am breathing much harder than my husband. If it’s not as hot, then our heart rates are more-or-less in synch for the same level of exertion.
I am seeing a heart doctor on Friday and I will discuss this with them.
But, this is another reason to work in building up more muscle and losing the extra weight I am carrying around.
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