My dad is newly diagnosed. ? About weight loss - CLL Support

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My dad is newly diagnosed. ? About weight loss

BethyBee99 profile image
8 Replies

My dad is 67 and was just diagnosed with CLL. We are waiting for information on staging. He went to the doctor because he has been losing weight. He has no other symptoms. Does weight loss mean he is further along and will need treatment?

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BethyBee99 profile image
BethyBee99
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8 Replies
AussieNeil profile image
AussieNeilAdministrator

Hi BethyBee99 and welcome to you and your Dad.

This post on our Pinned Post section healthunlocked.com/cllsuppo... covers the reasons for starting treatment with this one relevant to your Father:-

- Weight loss ≥ 10% within the previous 6 months

If your Dad meets the above criteria, his specialist will need to first determine if something else is causing his unexplained weight loss. That he has no other symptoms is an encouraging sign, as is the fact that this is not common reason to start treatment.

If your Dad does need to start treatment, please do not rely on internet searches for information about them, but get your information from trusted sources, such as this community. Treatments have hugely improved in the last few years and much of what you'll read elsewhere is likely to be out of date. See for example this post:

healthunlocked.com/cllsuppo...

Neil

BethyBee99 profile image
BethyBee99 in reply to AussieNeil

Thank you!

Eric70 profile image
Eric70

In my particular case treatment was started mainly because I was losing weight. My blood result were not especially giving concern at the time. I had bad night sweats, but no lymph node swelling at all. Treatment was B&R over 6 months and I have been in remission now for over 5 years. The best of luck, regards Eric.

LeoPa profile image
LeoPa in reply to Eric70

Do you know whether you are mutated or unmutated? Did they find out why you lost the weight? My simplistic understanding was that when one has a enlarged spleen he feels full and does not eat enough. I wonder what other reasons are there for losing weight with this condition.

Eric70 profile image
Eric70 in reply to LeoPa

Sadly, I do not know if I was mutated or not, as the hospital gave me very little information on my condition at that time. I never received a reason for my weight loss, but it did get quite low and I told my consultant that I was getting very worried about the rate of loss and that it could make any Chemo treatment go badly for me. I went from about 10 stone down to almost 6 stone and was wearing children's clothes by that time. I have since moved to the care of another hospital and my care has been greatly improved. It did take some time for me to recover to my normal weight, but I am now back to close on 10 stones again.

wizzard166 profile image
wizzard166

I lost 20 pounds in the last six months, with all of it coming in the first three months of the six, from 252 to 232 and I'm six foot even. In my mind I didn't do anything special, other than I began to eat a lot less at each meal purposely. Recently I had my six months visit with my CLL Specialist, and I mentioned the weight loss. She said it is only important if you weren't trying to lose weight. When I said I did not exercise at all, she replied that I had started eating smaller portions. In essence I think the weight loss needs to be consistent, and mine stopped despite my portion limitations still being less than historical.

The blood work will tell the story, and a good hematologist/oncologist will know if the weight loss is a significant factor.

Carl

Ibru profile image
Ibru

Read everything you can at CLLSociety.org It will give you great background on test results, treatment options, etc. Valuable resource.

From my 18 years of disease experience, weight loss is not necessarily a sign of disease progression. It could just mean he feels badly and is not hungry, or his spleen could be enlarged and pushing against his stomach. There is no knowing until all diagnostic tests are done.

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