muscle and weight loss

[Tedco]

Does CLL cause muscle and weight loss?

[AussieNeil Partner Administrator]

Unexpected weight loss is one of the triggers for starting treatment, per the iwCLL guidelines:

- Disease-related symptoms as defined by any of the following:

a. Unintentional weight loss $10% within the previous 6 months.

b. Significant fatigue (ie, ECOG performance scale 2 or worse;

cannot work or unable to perform usual activities).

I'd say muscle loss would be a secondary effect through not being able to keep as active due to infections, low haemoglobin, fatigue, treatment.

Neil

[scryer99]

"Not being as active" captures it pretty well.

CLL can cause weight loss if spleen/lymph swelling impinges on the digestive system, as AussieNeil posted.

But the main issue for me has been the inability to maintain a serious exercise program. I can exercise, but it's sedentary stuff like walking and yoga and maybe mild stationary biking. For a decent chunk of the late W&W stage and much of treatment, cycling / running / heavy strength work has not really been feasible.

My cycling mileage dropped 80%. Since I'm used to a calorie load from cycling, that's made it more likely I'll gain weight and lose muscle. I can manage, but not nearly as well as when healthy.

[Cdub32 in reply to scryer99]

My weight loss..from 210 lbs in 2012 to 175 lbs in 2025 is attributed to my CLL diagnosed in April 2012. Most of it is caused by an enlarged spleen...I become very full on not as much food. Also cut the alcohol intake dramatically due to treatments..CalQ and later Brukinza..both were a bust with side effects. I am trying to get back to my 3-4 days with cardio and weight after my October experience..earlier reported to the group..at 77 I just keep after it..

[22011 in reply to scryer99]

Don’t write off yoga as sedentary. I do standing chair yoga now instead of a mat workout and even that has kept up my muscle and strength.

[Titian72]

I am on W&W for almost 5 years now and have been losing weight and muscle gradually. I do try to exercise twice a week (it is a highly physical full contact martial art), as I have done all my life whenever I am not unwell with flu and viruses. I can't seem to stop the weight and muscle loss however. I eat well so it is mystifying and I can only attribute it to CLL.

[RosettaClapp in reply to Titian72]

With aging we all loose muscles

[LeoPa]

Not yet in my case.

[kablea]

This is a fascinating subject and ill understood. Even though the muscles might be reducing, keeping what remains strong is important. The strength of the muscle matters as well as the bulk. I have eaten whey protein as part of my breakfast over the past 12 months. Have stopped now but difficult to say whether it had any impact. I am running just over 20 miles per week plus 10 walking, and I can add in a lot of gardening. That keeps me fit but I am finding an increase in tired spells. I put it down to age (nearly 79) rather than CLL.

[Research123]

If you're tired and do less exercise, odds are you'll lose muscle as that's how it works. Personally am now trying heavier weight exercise for shorter periods - generally bigger weights /strain will build higher strength than low intensity long workouts, and I can do some exercise for a minute or two before I get too tired or bored. I still think I'll get turned down though if apply to star in the next hulk movie......

[biplane]

With almost 33 years in this CLL journey I've never felt it effected my strength, Ive always been busy with some project that required some physical strength and for years did some sort of weight exrecise. On April 12th last year I fell on a concete floor due to there being rubber mats that slipped out when I stepped on them, they were wet underneath. I landed hard on my right arm/shoulder, nothing broken but the arm was useless for many months and even today is still painful to rise over my head. I can really notice the loss of strength in the arm and wonder if I'll ever get it back. My last treatment was O&V Sept 22 - Aug 23 and all is going well from that.

[DanBro1]

At our age, muscle and weight loss is normal. I've noticed that I've lost muscle and weight in the last few years, but I do not attribute it to CLL. I'm thinking some light weight training will help with my muscle tone, but I can't seem to get motivated enough to start a regular exercise program....

[Golflover1954]

I went from 163 to 149 lbs in two months back in Oct-Nov 2023 as CLL took hold. I have been in full remission for 6 months now and have gained 11 lbs back with good nutrition and daily cardio and 3X strength training. Be good to yourself. Take care.