Muscle loss

[Tomaitch21]

My dad has just recently been diagnosed with CLL. Over the past few months he has been losing a lot of muscle mass especially round his arms.

Does anyone have any advice about this? And any tips on how to boost his energy levels?

Tom

[cllady01 Former Volunteer]

Tom, I wonder if there is something more than CLL going on with your 51 year-old father?

Losing muscle mass is not directly related to CLL. Has he become less active? Has he had a complete physical that would give an idea of something that might cause muscle loss?

A good physical therapist would be helpful in teaching him and leading him slowly to build back muscle mass if he is otherwise healthy.

I would also add that eating well along with the exercise would be helpful also. You have not eluded to it, but is he emotionally upset with the diagnosis of CLL and feeling like all is lost?

[Newdawn Administrator]

Hi Tom,

Losing muscle mass around the arms is a strange one for CLL and something he needs to taking up with his haematologist or GP. He’s not diabetic is he? As Cllady has said, has he changed his diet or activity lately with being so tired?

This could be unconnected to his CLL because we do get all the other health ailments too. Please seek medical advice on this and advise his doctor just how tired he is. They’ll need to make sure he doesn’t have anaemia.

Best wishes,

Newdawn

[Strube]

Hi Tom,

I had exactly the same problem that predated my diagnosis. Particularly biceps and shoulder muscles. That and fatigue from work i used to find easy was how i knew i had a problem.

I wouldnt say it was muscle wasting but what i found was that if i had a couple of weeks holiday off work when i went back i couldnt regain the tone id lost. It would take weeks and weeks of struggling.

Ive never had an explanation and had all kinds of tests that in theory exclude anything else sinister going on. In the end the docs kind of shrugged and moved on.

Sorry i cant be much more help than saying that he isnt alone. As regards energy levels it sounds counter intuitive and it breaks me regularly but ive found pushing myself as much as poss physically in the garden etc really helps. I feel rotten in the evening if i push too far and theres a delicate balance point. When i go too far its like a switch is flipped and im absolutely done for the day but if i keep pushing overall i feel better and have more energy.

Best regards.

[LeoPa]

Muscles are the storage depot for proteins. To prevent muscle loss, one needs to consume adequate amounts of protein, preferably of animal origin, because its assimilated the easiest. Activity levels have to be adequate. Anybody sitting or lying down all day can be expected to lose muscle. Other than that, absorption problems could be a reason. A gastroenterologist should check him if lose stool, no appetite etc is a problem too. Numerous food allergies, histamine intolerance etc. etc. could play into it too.

[Luap001]

Something I just mentioned in reply to another post: I am newly diagnosed and am a very active runner and weightlifter. If your father has become sedentary due to fatigue, see if a dietary or even prescribed stimulant may help. Long before I was diagnosed I have been taking amphetamine salts for adult attention deficit disorder - to help focus. Now I find I also help fight fatigue. I also am a coffee lover. And if I high level of activity is not something he can handle well, then perhaps going for a long walk while carrying say 2lb (1kg) dumbbells would be a great way to start. Don’t forget sunscreen if this is done during the daytime given our (CLL patients) greater susceptibility to skin cancer.

Having sufficient protein in your diet is essential to maintain and build muscle. If his appetite is limited, he might consider whey protein if he has no allergies to dairy. Otherwise there are plant based protein powders. Either could be incorporated into a smoothie and could even serve as one of his daily meals.

Hope this helps.

[SofiaDeo in reply to Luap001]

If herpes type infections are a consideration, egg white protein may be a better choice since whey is higher in arginine. Assuming no allergies or ethical restrictions, of course. For vegans and others wanting to incorporate more plants in to their diets, quinoa is the only plant I am aware of that contains all the essential amino acids. It's gluten free and high in lysine. Tastes great with olive oil!

[Big_Dee]

Hello Tomaitch21

Best to ask your doctor. Rapid weight lose is a symptom of CLL. In any case I am a big fan of moderate exercise and a healthy balanced diet to get ready for, if or when, your father requires treatment. Blessings.