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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
April 2, 2024
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Answer Summary

Members responded warmly to a question about returning to pre-diagnosis weight with Multiple Myeloma, sharing a wide range of experiences from... Read more

Members responded warmly to a question about returning to pre-diagnosis weight with Multiple Myeloma, sharing a wide range of experiences from significant weight loss after stem cell transplants to unwanted gains from dexamethasone steroids. Several members described the frustrating cycle of losing muscle mass, changes in appetite, and how treatments like Revlimid and steroids made weight management especially difficult. A recurring theme was encouragement to focus on feeling well rather than the number on the scale, with many members reminding each other that staying active, eating in smaller portions, and celebrating being alive matters most.

A MyMyelomaTeam Member

I lost 10 pounds when I had my SCT (Jul 2022) and found it all again last Christmas! 😂 I love food. 🩷 (photo taken this weekend)

April 2, 2024 (edited)
A MyMyelomaTeam Member

I thankfully am still under 200lbs
When I was diagnosed in July of 21 my weight was 235-240 for many years. My lowest weight was 180 so I have put 10lbs back on.
At 190 which I am currently is what I weighed when I graduated from high school in 1971. While I wouldn’t sell Multiple Myeloma as a weight loss plan it has helped me drop 40+ lbs and I have been able to keep it off.
I don’t know in my answer helps or not but there it is
Mike

April 2, 2024
A MyMyelomaTeam Member

No matter how active I am or how healthy I eat , I am still 10lbs more than my pre-diagnosis weight. As long as I feel good , I am not concerned in the least. I still believe that the treatment has something to do with weight gain.

April 2, 2024
A MyMyelomaTeam Member

Not me! I have gained about 15 pounds since my diagnosis last June, thanks to Dex and eating like a truck driver! 😝 Just finished my last round of Dexamethasone last week so hoping to shed some of these extra pounds.
Pam

April 2, 2024
A MyMyelomaTeam Member

Donna I was out of commission from March to December and not moving around very much so I lost my mobility so now I have to use a walker or cane but because of physiotherapy and exercises I can get around pretty good compared to when I came home from the hospital. I do 20 laps on my kids 40ft. deck with my cane then I do 20 laps with my walker and some days I do an extra 10 laps with my cane. So I know all to well how fast we can lose muscle mass and I still don’t have a lot of strength in my legs and hands. Greg my biggest problem is trying too open things and buttoning up shirts or the shirts with snaps and the smaller snaps are worse but no complaints because I am still alive and can still enjoy some things in life.

April 4, 2024 (edited)

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