Not very happy with this It is very depressing... - CLL Support

CLL Support

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Not very happy with this It is very depressing and another battle Has anyone had this experence? I am not getting much of an explanation !!!

gelato profile image
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I had Cll for 8 years never a problem In January extremely high numbers ( going up slightly for years but felt ok. My Dr started me on Gayza, Obinutuzumab Chemo. I am gaining weight from this. I would like to know Why What does it do to the body that causes weight gain. I would like to stop the chemo, besides feeling tired with no energy.

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gelato
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Speculating about the weight gain: CLL when bad enough can cause weight loss so it is possible you had CLL to a degree that it was suppressing weight gain and once Obinituzumab killed off enough of the CLL, you are going back to normal where you can again gain weight.

BTW, Obinituzumab is a monoclonal antibody. It is not a "chemo" drug. A number of newer treatments are erroneously still referred to as "chemo", but are not: monoclonal antibodies, BTK inhibitors, BCL-2 inhibitors

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

You didn't say how many treatments you've had, or what pre meds you are getting. Without knowing that I would suggest that if your pre meds include a steroid that it could be the cause of your weight gain. Both steroids and IV Benedryl could be part of your fatigue. Have you considered those possibilities? Gazyva has left me in remission for 5 years now. It's a great treatment for some of us.

Loulou46 profile image
Loulou46

Are they giving you a steroid? That could be the culprit. Steroids are giving to lessen the possibility of allergic reaction but causes weight gain. Best of luck hoping for a complete remission for you!

jbctx profile image
jbctx

I was 9.5 years before treatment.

So in my opinion you may have overlooked, as I did, the strain finally spiraling CLL puts on your system.

An explanation that I read somewhere is for some of us the body will burn through fat and excessive calories in an effort sustain normal. Hence the weight loss due to many diseases.

This was fairly true for me, I was eating very well but weight was slipping slowly away in the 6 months prior to treatment even though fatigue and the corresponding lack of activity were kicking in.

Since starting treatment, I have been exercising again and have gained a fairly unnoticeable 10 lbs. Part of my treatment protocol is Obinutuzumab but again, in my opinion, I do not necessarily believe it is the Obinutuzumab causing the weight gain but the fact that a treatment plan is lowering the CLL load on my body.

In some ways you may be finding your way back to normal. Healthy diet, a little exercise and some time may be the key.

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