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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.
July 23, 2025
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Answer Summary

Members rallied around the question of outdated multiple myeloma survival rates, with many sharing that real-world experiences far exceed what... Read more

Members rallied around the question of outdated multiple myeloma survival rates, with many sharing that real-world experiences far exceed what statistics suggest, including members living 9, 13, 15, and even 35 years post-diagnosis. Several members offered helpful context, noting that survival data lags behind new treatments, that statistics reflect older patient populations, and that newer therapies like CAR-T, bispecifics, and Darzalex are changing outcomes. A recurring theme was choosing to focus on quality of life, faith, and personal advocacy rather than statistics, with many encouraging newly diagnosed members to find hope in the community's stories.

A MyMyelomaTeam Member

I have the same side effects that a lot of you have but I have found that I can live with it. One day at a time and I try not to get too depressed over the conditions in this country and the uncertainty of the funding for my medications and social security. As far as a cure, I am happy just to be alive and not suffering some of the effects that I see that some of my team members are living through. Don't dwell on the negative and rejoice in the positive aspects of your life and make each day count. Be strong and best wishes. 👨‍✈️

October 8, 2025
A MyMyelomaTeam Member

Well said CapeTeddy, you touched on will to live and possibly genetics playing a bigger part than going on exotic or extreme diets. I was literally nearly a health and fitness nut before getting MM and that didn't stop me from getting it. So I actually eat more of what I want now and try to enjoy life more now. I figure if extreme health didn't stop MM from entering my body, how is it going to cure it. I am doing real well in maintenance now and enjoying life.

July 27, 2025
A MyMyelomaTeam Member

I agree, RickDeLaTorre, it should be around 10 years by now. I was diagnosed stage 3, IGG kappa on Oct 18th 2010. I was told it didn't look good and if treatment doesn't work I might not make it to the end of the year. I also have prior heart disease that was considered in that survival projection. Obviously the treatment worked but everyone is different and everyone responds different to treatments. The only thing I did back then was I quit smoking and cut back on the drinking. In fact I think it's been a few years since I had a beer and I don't really miss it. I didn't change any eating habits and never went on any special diets. In fact my sweet tooth increased and I eat more tasty treats then I did before. I still use 4-5 teaspoons of sugar in my coffee but I do keep an eye on my glucose everytime they do labs and it's been normal. My weight jumps back and forth from 175 to 185 and that is in the normal range for my height. I still eat my regular meals like steak, chicken, pasta, pizza for dinner and eggs, cereal, oatmeal, pancakes, bacon, sausage or donuts for breakfast. Some people go on healthier diets and that's fine because you don't want to get diabetes and if a special diet helps you, makes you feel better then by all means do it. I made it 15 years so far and it's mainly because I don't stress out over having cancer. I don't run around trying horse medicine, spices or anything else from the internet. I have had 2 stem cell transplants and a few different chemo combos and they have kept me alive for 15 years so I'll keep doing what works for me.. MM adapts to treatments and they will stop working after a while. This why we go through so many chemos. It's not the doctors fault and it's not a conspiracy with the CIA and pharmaceuticals. Most my treatments lasted 4 or more years and some didn't work at all. Revlimid (lenalidomide) causes diarrhea some get it real bad and it also depends on the dose level. I took it on and off for 13 years and it stopped working for me. Everytime I stopped it, my diarrhea stopped. Just about every MM patient has been on Revlimid. It is a very successful chemo for us. If you're on it and the diarrea gets bad, ask your doctor for Atropine with Diphenoxylate tablets aka Lomotil, it works great. It put me back to normal stools. In 2010 the survival rate was 3 years but I think the reason I have been around so long if because I have the will to live. Stay strong and keep up the fight. 😎

July 27, 2025
A MyMyelomaTeam Member

The AI answer is correct. Survival rates always lag behind. We just have to keep doing well. So myeloma becomes one of the greatest cancer survival stories ever. 💜

July 23, 2025
A MyMyelomaTeam Member

Seems to me that average survival rates should be around 10 years, with most living at least 5 years and many living 20. Then again some of those surviving only 5 years may have had other existing conditions or were old enough that their time was expiring anyway. I think getting this unpredictable disease has made us more human and aware of our mortality. Stay positive my fellow journey traveler's.

July 26, 2025 (edited)

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