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.
January 8, 2024
 · 
Reactions

Answer Summary

Members shared widely varied experiences regarding remission length after stem cell transplant for multiple myeloma, with timelines ranging... Read more

Members shared widely varied experiences regarding remission length after stem cell transplant for multiple myeloma, with timelines ranging from just a few months to over 20 years, emphasizing that while most patients do eventually relapse, the timing depends on individual risk factors, genetics, and response to maintenance therapy. Several members highlighted practical strategies for extending remission, including staying on maintenance drugs like Revlimid or Darzalex, getting regular MRD testing to monitor disease activity, maintaining a healthy lifestyle with proper nutrition and stress management, and staying current with vaccinations to protect a compromised immune system. A recurring theme was the importance of taking life one day at a time, staying positive during remission rather than focusing on the fear of relapse, advocating for oneself within a often frustrating insurance and healthcare system, and drawing strength from faith, community support, and the knowledge that new treatments continue to emerge.

A MyMyelomaTeam Member

Welcome to the SCT club. I was diagnosed 1992 and 1st transplant in 1996 after my 1st relapse. I have had 3 stem cell transplant and relapsed a few years after each one.
Just because you relapse does not mean you can give up.
My 1st dr did not give me much hope, I did not listen to him. I have survived over 30 years since 1st diagnosed.

Do Not Give Up
Keep up the Good Fight.
You may have set backs, but don’t give up. Have friends & family you can lean on, if you have a bad day. I averaged about 4 years between relapses.
Living with Multiple Myeloma is a pain in the ass but it’s not the end of the world. There are so many new medicines & treatments coming out all the time. I was very lucky when I had a relapse, there was a new medicine coming out that my body was not used to.

I wish you the best and
Please Keep Up the Good Fight

January 9, 2024
A MyMyelomaTeam Member

No one, in my opinion could predict when you might have a relapse. I am sure there are statistics out there for various patients and treatment regimes but really for each of us it is unknown. I have relapsed twice in the last 7 years and my current treatment finally has me very close to a zero m-spike. I am happy with that.

January 16, 2024
A MyMyelomaTeam Member

Hi Jenn, I was diagnosed in April 2019. Went into remission October 2019. In December 2019 I had my stem cells harvested and they are still frozen at IU. Never had a SCT and my MRD shows no MM cells. I’m currently on no maintenance but get labs drawn every 3-4 months. I feel great right now but I’m prepared for MM to possibly raise its ugly head again. I just pray they will find a cure for this horrible disease 🙏🏻 I know I’m very fortunate but many of you are not. I read about everyone’s pain and broken/fractured bones and I thank God everyday for how great I’m feeling. Praying for you Jenn and that you will remain in remission for many years to come! 🙏🏻❤️🙏🏻

January 9, 2024
A MyMyelomaTeam Member

@A MyMyelomaTeam Member is correct. It would be nice for the magic wand to be waived but there is no cure. Just stays of execution through our therapy appeals process. And the ASCT is an ancient method of relief in technological terms. The BMT team at Thomas Jefferson University Hospital in Philadelphia has been transplanting stem cells over thirty years in a Henry Ford assembly line system. Patients in every day, 14 day grueling stay, back home to recover. What really pisses me off and this is important are 2 things! One, I couldn’t get a back to back tandem transplant because Medicare wouldn’t pay for it. That sticks in my crawl. Two, my oncologist said I cannot go on to other clinical trials until I have the second transplant. I must have so many lines of therapy before eligible for more advanced treatments like Car-T. Who rigs this system? We are dying and our doctors hands are tied by bureaucrats? It’s like Revlimid. If it’s given in the hospital it’s fully paid. But if it’s sent to your home you foot the bill. It’s rigged. Who rigged this?

In any event it’s all about the money. So I have to go through hoops before I get the care I need. But you know what? I’m happier than a pig in poop that I’m alive and doing better than I deserve with this bad blood.

Someday let’s talk about accountability and the fact that when you are physically, mentally, financially harmed by another individual or entity’s actions or inaction you should be entitled to justice, remuneration, compensation, etc. And the number one entity that causes the most problems with no recourse is the government. Case closed!

January 9, 2024
A MyMyelomaTeam Member

I lasted 5 years after my first SCT and 7 years after my second SCT and I would do it again in a heartbeat because the SCTs gave me 21 going on 22 years of fairly decent life.

January 9, 2024

Related Questions

View All
A MyMyelomaTeam Member asked a question 💭
Martinez, CA

A MyMyelomaTeam Member asked a question 💭
Prospect Park, PA

A MyMyelomaTeam Member asked a question 💭
Newfoundland, Canada