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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.
June 20
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A MyMyelomaTeam Member

Aretha,
AI did not give you the full answer you need. The Multiple Myeloma Research Foundation has a Patient Handbook that you can print or download. It has all the information you need. The Foundation also has counseling and financial counseling and so much more.
HTTPS://www.themmrf.org
Paula🌹

The MMRF | Multiple Myeloma Research Foundation
The MMRF | Multiple Myeloma Research Foundation
June 20 (edited)
MyMyelomaTeam

Great questions — let's tackle them one by one.

High-Risk Myeloma

Risk level is assessed at diagnosis but can change over time as the disease progresses. Higher-stage myeloma generally means a more aggressive disease course. Doctors use factors like disease stage, genetic markers, and how the cancer responds to treatment Show Full Answer

Great questions — let's tackle them one by one.

High-Risk Myeloma

Risk level is assessed at diagnosis but can change over time as the disease progresses. Higher-stage myeloma generally means a more aggressive disease course. Doctors use factors like disease stage, genetic markers, and how the cancer responds to treatment to determine risk. Higher-risk patients are often treated with more powerful regimens, such as those including newer monoclonal antibody drugs like daratumumab (Darzalex). Is Long-Term Remission Possible?

Yes, long-term remission is absolutely possible. Remission means treatment has reduced myeloma to undetectable levels. There are two types:

- Partial remission — Some cancer cells remain, but the disease is less active and symptoms improve
- Complete remission — No cancer is found in tests or scans, though tiny amounts of cells may still exist

One MyMyelomaTeam member shared: *"I've been in remission for five years and feel fine. I just have a doctor phone call every 13 weeks."*

Some people achieve such deep remission that myeloma never returns, though regular monitoring is always needed. Will You Be on Maintenance Therapy for Life?

Possibly, yes — many doctors now recommend staying on maintenance therapy indefinitely, as long as side effects are manageable. Research suggests maintenance therapy becomes more effective the longer it's taken.

The goal is to reach MRD-negative status, meaning no detectable cancer cells remain. The duration is always balanced against how well the treatment is tolerated, so this is a very personal conversation to have with an oncologist.

June 20
A MyMyelomaTeam Member

It depends on what the drug is, what the dose is, and what the side effects are. If you are MRD negative, you can choose to do it or not.
Paula 🌹

July 5
A MyMyelomaTeam Member

Lynne I’m still doing maintenance biweekly 2.6mg of Velcade. I will skip a couple of weeks if ai have plans to traveling

July 12 (edited)
A MyMyelomaTeam Member

Thanks Paula. Hope you are faring well.

July 6

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