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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Weight loss or gain during multiple myeloma treatment?

by ptoocrafty on Sun Dec 21, 2014 4:32 pm

I've been on Velcade and zoledronic 2 times a week for 2 weeks then one week off. I've been on this for almost 6 months and have gained 40 pounds! I have another 6 months to go, but only have to have my treatments for one a week with one week off.

I really hope I'll start dropping weight now as I won't know what to do.

Pat

ptoocrafty

Re: Weight loss or gain during multiple myeloma treatment?

by JimNY on Mon Dec 22, 2014 3:33 pm

Are you sure that isn't a typo, ptoocrafty, when you say that you're getting "zoledronic" (most likely Zometa -- zoledronic acid) two times a week, for two weeks, with one week off?

Perhaps you meant to say dexamethasone instead of "zoledronic"?

JimNY

Re: Weight loss or gain during multiple myeloma treatment?

by Sharon01 on Tue Dec 23, 2014 1:43 am

A question. When the dex is lowered – I am currently on 80 mg per week over 4 doses – will some of the weight naturally leave, or at least some of the 'myeloma' belly and face reduce?

I am really finding it hard to deal with as I feel so uncomfortable and embarrassed by it. Not good for the self esteem.

But on an upside, Merry Christmas to you all!

Sharon01
Name: Sharon
Who do you know with myeloma?: Self
When were you/they diagnosed?: September 2014
Age at diagnosis: 48

Re: Weight loss or gain during multiple myeloma treatment?

by JBarnes on Tue Dec 23, 2014 1:59 am

You should see some weight drop off due to the lack of water retention the dex causes. The puffiness left me within a couple of weeks of stopping the dex. You'll still probably be left with some unwanted weight, but, what the heck, you are still alive! Jerry

JBarnes
Name: Jerry Barnes
Who do you know with myeloma?: Self
When were you/they diagnosed?: Aug 17, 2012
Age at diagnosis: 54

Re: Weight loss or gain during multiple myeloma treatment?

by Ellen Harris on Tue Dec 23, 2014 11:55 am

Diagnosed in April, 2014, began RVD immediately (dex was 20 mg twice a week with Velcade for two weeks, Revlimid 10 mg, 21 days on, 7 days off).

On the dex days, I had an appetite, not huge, but I ate well. The other days, not so much. I lost about 10 pounds.

Stem cell transplant October 9th. I'm still recovering, but gradually feeling better. I only lost about 5 pounds, which I have since regained. It was a struggle to eat until recently. I lived on chocolate milk -- I drank about a quart a day! I am a small person, 5'1" 120 pounds, so I didn't want to lose much more weight.

I used to work out quite a bit before I became ill. Getting the mojo back on that one has been difficult. My endurance is not at all good. I am hoping to get back into shape as my recovery continues.

Ellen Harris

Re: Weight loss or gain during multiple myeloma treatment?

by CherylT on Sat Sep 02, 2017 8:07 am

I was diagnosed in 2015. I was given Velcade, dex, and Cytoxan (cyclophosphamide), and started to gain weight. Had a stem cell transplant in 2016 and had some extreme side affects and lost 30 pounds. I am back on maintenance Velcade, Xgeva, and icing which I get a steroid with. I have gained some weight and seems to have put it on around my middle and hips. It is frustrating because no matter what I do, it doesn't seem to move.

CherylT

Re: Weight loss or gain during multiple myeloma treatment?

by jjc on Sat Sep 02, 2017 10:28 am

Cheryl,

The only thing that has worked for me to stop / reverse weight gain from steroids is a low carb diet. I try to keep carbs to under 20 a meal, for breakfast that drops to under 10. (But even doubling those limits would be a huge improvement for many.) When I started ten years ago my fasting glucose was 79, it is now closer to 90. Most would say that is nothing to worry about, but I was getting blood sugar spikes of over 140, which is very harmful. After the first 30 days, all fluid retention was gone, food cravings gone, and my kidney function improved to back to normal creatinine levels. Added plus, the emotional swings from taking steroids once a week were also greatly reduced. Don't get the big highs or crashes. So I am leaning towards that for me any reduction in insulin production is very negative to my overall health, and probably an issue that is not addressed nearly enough in the entire population, not just cancer patients.

Maybe it is just me, but I can eat a carb, and five minutes later crave another carb. Very additive, almost like a drug addiction. Being off that train has been so good, that I actually look at a high carb food and think, "That will make me feel like crap," and don't have a desire to eat it.

jjc

Re: Weight loss or gain during multiple myeloma treatment?

by Abinet on Wed Mar 14, 2018 9:49 pm

I just finished 6 cycles of Velcade, cyclo­phos­phamide, and dexa­metha­sone (VCD). I lost about 4 kg (9 pounds) since August 30. Today I'm 59.9 kg, down from 63.2 kg when I started. My medical team didn’t pick up the weight loss. I will mention next week when I am scheduled for a doctor's appoint­ment.

I think I am eating quite a lot, but only during the day. Evenings after 8 only have something very light and I am doing regular exercise and Pilates, so that could be the reason! I eat mostly vege­tar­ian with some protein and bread only about 3 times a week. Mind you my sweet tooth has been difficult to control, but I keep to some biscuits. Yes, face puffed up and dexamethasone has given me cataracts.

Abinet

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