[urnsbay]

Re: Weight loss or gain during multiple myeloma treatment?

by urnsbay on Fri Jul 01, 2011 11:35 pm

My DH is just finishing his first month with Revlimid and dexamethasone. He has lost almost 30 pounds in this time. His appetite has been "ok" to little, though some nights he eat really well. His exercise has been nil - his rib cage, sternum and shoulder area all hurt so bad he can barely breathe, much less walk more than absolutely necessary. We will be seeing the oncologist next week, and I am very anxious to hear what they say about his severe decline in health.

[Karen]

Re: Weight loss or gain during multiple myeloma treatment?

by Karen on Wed Jul 06, 2011 3:20 pm

I'm in a Phase 3 clinical trial (actually I'm in the last cycle this month) with Dex, Rivlamid and Velcade. I've gained about 20 lbs since I started the trial in January, and that includes a break for a stem cell harvest (didn't experience any nausea or weight loss from the Cytoxan.)

The dex has made me ravenous at times and while I have been trying hard to make good food choices (fruit, salads, etc.) it is really hard. I'll be eating a perfectly good meal and will feel starving while eating and afterwards!

Part of the problem also is that back in the fall I seriously stretched a tendon in my foot and didn't really start addressing the issue until around the time I was diagnosed with the multiple myeloma (in December). So my usual form of exercise, brisk walking, had to be put on hold. I recently got a recumbent bike and am hoping using that will help a bit. I tried going on Weight Watchers but am finding it very hard to keep within my points limit!

My doctor does not seem very concerned about the weight gain, other than encouraging me to maintain healthy eating habits and exercise as I can. I've never weighed this much before--I've always been one of those people who eats fairly healthily but usually would like to lose 10 lbs or so. I'm sure I have been doing some additional "comfort eating" since my diagnosis but nothing that would put on this much weight, so I have to blame the steroids. I'm hoping that once I start my maintenance regimen (a lower dose of dex, plus Rivlamid) I'll be able to take some of this off.

[KenDick]

Re: Weight loss or gain during multiple myeloma treatment?

by KenDick on Wed Aug 31, 2011 7:52 pm

I gained 30 lbs during treatment of Velcade and Revlimid because of the steroid with them. I lost it all during and right after stem cell transplant..Then I gained about 5 lbs when my appetite came back !! It's leveled off now since I'm not taking anything now..

[ladyleese]

Re: Weight loss or gain during multiple myeloma treatment?

by ladyleese on Fri Sep 23, 2011 1:06 am

My mother has lost more than 60 lbs since she was diagnosed Easter 2011. She has no interest in eating, says textures of food change in her mouth. She is totally bedridden and hasn't been able to get up due to dialysis, extremely low blood pressure, hemo 8 and platelets at 20.

[guest]

Re: Weight loss or gain during multiple myeloma treatment?

by guest on Fri Sep 23, 2011 7:49 pm

I gained about 30 pounds through my induction and transplant, a year later I've lost maybe half of it? But I am early 30's so I went from very active to laying on my couch for a year, and also 6 months of highdose dex which made me get the round face, and quite a belly when I never had this before.

Now from my transplant I am menopausal, and finding it impossible to lose any weight even though I work out at least three days a week. I have put 1000 km on my road bike this summer if that give you any idea of how much fitness I am doing? Now the weather is cooling I'm going to get serious about my gym again and resum swimming two or three days a week (about 50 laps each time) and some other cardio and weight machines.

Through my treatment I pretty much lost all my muscle tone and I last january I had to pretty much start at zero (5 mins on the stationary bike would wind me, or 10 mins on the eliptical). I really want to get back to my pre-diagnosis weight of 130 (about 10-15 pounds to loose) which was still not as that skinny since I'm just over 5 feet 2.

[moya]

Re: Weight loss or gain during multiple myeloma treatment?

by moya on Sun Sep 25, 2011 1:13 pm

i started my trial in june and have gained nearly 28lbs..I do try to exercise with water areobics and walking..but the majority of the time i feel so shakey and tired its hard to get motivated..Is this common with this condition?

[suzierose]

Re: Weight loss or gain during multiple myeloma treatment?

by suzierose on Sun Sep 25, 2011 2:04 pm

Moya would you mind sharing what agents you are on? Or can you share if you are on dexamethasone or not?

[moya]

Re: Weight loss or gain during multiple myeloma treatment?

by moya on Fri Sep 30, 2011 1:32 pm

Hello Susierose,
I was taking Thalidomide and Dexamethasone for five trials..Unfortunately this trial hasnt really suited me at all.. Ive been taken off that trial and will be starting a new one on oct 12th.Happy days...How are you coping with your diagnosis?...

kind regards moya

[suzierose]

Re: Weight loss or gain during multiple myeloma treatment?

by suzierose on Fri Sep 30, 2011 2:35 pm

Hi Moya,
Thanks for the response. That Dex can sure change an individual's body shape!

My diagnosis is frightening since the initial dx was bad, and the more data that comes back the prognosis gets worse. I have awful cytogenetics. So, coping for me means calling and asking for anti-anxiety meds to keep me from just being completely terrorized.

Thanks for asking.

[moya]

Re: Weight loss or gain during multiple myeloma treatment?

by moya on Sun Oct 02, 2011 8:10 am

No worries, its nice to chat to someone going through the same thing..
After reading your email, i looked up cytogenetics and in all honesty im not sure what that entails for you...can you explain a little more, since ive stopped taking the dex my appetite has subsided a lot ..
Would you mind sharing how old you are..im 51..

Hoping your well moya