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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.

Good day, Is there anyone who was told they have high risk cytogenetics and have had a long remission 5+ years post stem cell transplant?

A MyMyelomaTeam Member asked a question 💭

It’s Marcie Albert in Canada. I am home after having my autologous stem cell transplant on June 3rd, home and feeling fatigue and nausea but managing the best I can hoping this soon subsides. I am looking forward to knowing how deep my remission is. Would like to know if anyone with high risk features had or still has a long remission.

June 23
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A MyMyelomaTeam Member

Marcie,
It’s different for everyone. Even those who are high risk, sometimes relapse in a year and others don’t for years. There is no way the doctor can know for sure. He can give you the averages, but that can be depressing. Time will tell. Enjoy your life
Paula🌹

June 23
MyMyelomaTeam

Welcome home! Recovery after an autologous stem cell transplant is no small thing, and managing fatigue and nausea while staying hopeful takes real strength. Those side effects are very common in the early weeks and do tend to improve as your body recovers.

It's worth knowing that the first 100 days post-transplant are Show Full Answer

Welcome home! Recovery after an autologous stem cell transplant is no small thing, and managing fatigue and nausea while staying hopeful takes real strength. Those side effects are very common in the early weeks and do tend to improve as your body recovers.

It's worth knowing that the first 100 days post-transplant are considered the most vulnerable period, so staying in close contact with your care team about any symptoms is really important. As for long remissions — yes, they absolutely happen! A MyMyelomaTeam member shared that they are 18 years post-diagnosis and 17 years in remission following their stem cell transplant. They've celebrated incredible milestones along the way. That's a powerful reminder that long remissions are possible.

Research also shows that maintenance therapy after transplant — commonly lenalidomide — can significantly extend remission, sustaining it for 57+ months in many patients compared to 30 months without it. Regarding depth of remission, doctors now use Minimal Residual Disease (MRD) testing to check for any remaining myeloma cells after treatment. This can give a clearer picture of how well the transplant worked and help guide next steps like maintenance therapy.

Discussing MRD testing with your care team would be a great conversation to have as you move forward in recovery. Wishing you a smooth and deep remission! 💪

June 23

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