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.
July 28
 · 
Be the first to react
A MyMyelomaTeam Member

Nick, I agree. While I am very grateful for the progress being made in treatment and maintenance therapies, and the 2.5 years that I have lived a fairly normal life with this disease, five years of remission is certainly not what we all are wishing for. Hoping and praying for a breakthrough for us all. Lyn

July 28
A MyMyelomaTeam Member

I’m coming on 5 years- no SCT, no MM Meds while I remain MRD Negative

July 28
A MyMyelomaTeam Member

Nick,
Rare Cancer News had an article yesterday about maintenance therapy for only 2 years.
HTTPS://rarecancernews.com/news/stopping-myelom...
Paula🌹

July 28
A MyMyelomaTeam Member

Here's hoping we're all part of that 80% group. 4.75 years, on average after a SCT/BMT before relapse 😡😭🤮! Not good enough!

Anyone here on MMT go well past 4.75 years POST-SCT/BMT? If so, what maintenance phase of treatment are you on?

July 28
A MyMyelomaTeam Member

NickDiPaolo for info
But now l more on NSCLC

There isn’t one exact percentage that applies to every myeloma patient, because it depends greatly on risk genetics, depth of response after transplant, MRD status, and maintenance treatment.

patients who have an autologous stem-cell transplant (ASCT) and then take lenalidomide (Revlimid) maintenance, studies show a substantial number can remain without progression for 5 years or longer, but the percentage varies. A large meta-analysis found the median progression-free survival (PFS) with lenalidomide maintenance was about 53 months, compared with about 24 months without maintenance
For high-risk or ultra-high-risk myeloma, the outlook is generally less favorable. One study of transplant patients receiving lenalidomide maintenance found median PFS around 40 months for high-risk patients, compared with about 77 months for standard-risk patients.

For my situation is more complicated because you have several high-risk abnormalities (t(4;14), del(1p), monosomy 13 and del(17p)). The encouraging part is that you have already gone well beyond your transplant in November 2023 while continuing maintenance, and may results have been encouraging. Alhamdulillah.

My story: you had my ASCT in November 2023, and have now been maintained for well over 3years. The M-protein was not detected and my other myeloma markers were encouraging. That doesn’t tell that exactly when or whether relapse will occur, but it means l have already passed through an important part of the risk period without documented relapse. Alhamdulillah. 🤲😇

July 28

Related Questions

View All
A MyMyelomaTeam Member asked a question 💭
Qatar

A MyMyelomaTeam Member asked a question 💭
Richards Bay, ZA