Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
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.

We all have different stories & different outcomes from MM. For the most part our treatments are very similar but our lifestyles vary. Most of us choose to live a more healthy lifestyle after diagnosis and that varies from patient to patient. But there is no set pattern of things to do and not do to have a positive outcome. What works for one individual doesn't work for another. So how much is just plain luck & genetics?

March 26 (edited)
 · 
Reactions

Answer Summary

Members opened up about the unpredictable nature of multiple myeloma, with some sharing that they abandoned strict diets and still experienced... Read more

Members opened up about the unpredictable nature of multiple myeloma, with some sharing that they abandoned strict diets and still experienced positive outcomes, while others maintained rigorous health routines with mixed results, underscoring the theme that no single approach guarantees success. Several members discussed the role of genetics and personalized treatments, with one member describing how genetic testing revealed why a specific treatment worked so effectively for them, and another sharing nine years of stability on Darzalex and Pomalyst while experimenting with diet and exercise. A recurring theme was the emotional weight of living with uncertainty, the fear of relapse, and the comfort found in staying informed, physically active, and supported by a strong community, even when the science remains frustratingly unclear.

A MyMyelomaTeam Member

Hello Rickhowell, I was somewhat of a health nut when I was diagnosed, I also went in the opposite direction as far as diet. I enjoyed a lot of junk foods I hadn't eaten for quite a while and my outcome has been short of miraculous.

March 26
A MyMyelomaTeam Member

Rick, started on 01/24 the standard pre-SCT/BMT treatment, then on 06/24 had the SCT/BMT with the nauseating melphalan, proceeded to the maintenance phase of treatment on 10/24 which is lenalidomide 10mg/Eliquis 5mg. So far they say I'm stable. I have no severe pain, I exercise, no booze, no fried foods, no processed meats. I have no underlying conditions such as diabetes, high blood pressure, hypertension etc. I guess I should be happy, but the "waiting for the other shoe to drop" factor of the inevitable relapse is always in the back of my mind. Shouldn't dwell on it so much, but that's my inherent nature. I would say that I'm not lucky (cancer & luck don't go together so well), more likely my ability to stay in shape physically is helping me get through this abhorrent situation. Mentally, it's a whole other ballgame. Can't wait to get to the beach, at least that's where I relax the most and filter out negative thoughts.
I think those that have a strong support group deal with the mental aspect better than those without one.

March 27 (edited)
A MyMyelomaTeam Member

Yes, I try to stay up to date. It's a challenge since myeloma treatments are evolving so quickly.

March 28
A MyMyelomaTeam Member

Donna, you have some time with this, I am sure you have learned some about MM.

March 27
A MyMyelomaTeam Member

Nick, it can't hurt to help yourself even if it doesn't help it makes you feel better and maybe indirectly it helps.

March 27

Related Questions

View All
A MyMyelomaTeam Member asked a question 💭
San Jose, CA

A MyMyelomaTeam Member asked a question 💭
Ontario, CA