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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.
August 7, 2025
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A MyMyelomaTeam Member

Donna is right depends on all your surrounding circumstances health issues what risk like is it a progressive fast moving type but I can tell you darzalex fast pro is considered a very good drug so is revlamid it just depends on how it reacts with your body so report to your oncologist all symptoms you have while taking these drugs.
If you have a multiple myeloma specialist it’s very important because they do research on best treatments to use for your type of cancer like mine is stage 3 IGG Kappa standard risk after autologous stem cell transplant 12-23 I reached remission then I was taking only revlamide 10 mg reduced to 5 mg because I had rashes and shingles kept coming back as a result I relapsed in one year 3 months I think maybe I should have been taking a second drug not sure to keep mm away but not the end of the world cause there are many treatments to choose from to keep mm away!
Right now I’m taking kyprolis dexamethasone and darzalex with good results ClonoSeq testing showed 188 mrd mm cells 3-12-25
Then 52 mrd mm cells 6-22-25
Then 31 mrd mm cells 7-24-25.
So key is did you actually reach remission after stem cell transplant if not we have to have a second drug to keep mm away.
Standard risk can also change to high risk during course of our treatment.
Get a mm specialist usually at bigger cities bigger hospitals mine is in Houston MDAnderson DR. Gregory P. Kaufman to oversee an oncologist in smaller cities if not happy with one get a second opinion.
Learn all you can about this multiple myeloma cause doctors are still in learning stage and need all our input to help them treat us the most accurately.
We have only just scratched the surface of what makes this disease tick now with everyone’s help we will find a cure!!!!
Keep learning asking questions and sharing communicating and a cure will be found!
Just please never give up!!!!
We are our next generations only hope!!!

August 7, 2025
A MyMyelomaTeam Member

MD Anderson in Houston is a wonderful pool of people from the front door, 2D floor coffee volunteers to the Medical staff. I appreciate them ALL!

August 10, 2025 (edited)
A MyMyelomaTeam Member

It depends on your risk factors. Some specialists are using a two drug combination for maintenance now. Especially for high risk patients that have not reached mrd negativity. I have been on Darzalex with Pomalyst since 2017.

August 7, 2025 (edited)
MyMyelomaTeam

Currently, Revlimid (lenalidomide) is the only single drug approved by the FDA for myeloma maintenance therapy after stem cell transplant. Studies show it can significantly extend remission - about 57 months compared to 30 months without maintenance treatment. While Daratumumab (Darzalex) can be used for maintenance Show Full Answer

Currently, Revlimid (lenalidomide) is the only single drug approved by the FDA for myeloma maintenance therapy after stem cell transplant. Studies show it can significantly extend remission - about 57 months compared to 30 months without maintenance treatment. While Daratumumab (Darzalex) can be used for maintenance therapy, it's typically reserved for cases where there's a relapse after stem cell transplant. Your doctor may recommend different drug combinations based on your specific myeloma characteristics and risk factors.

Common side effects of Revlimid maintenance therapy include:
• Fatigue
• Diarrhea or constipation
• Muscle cramps
• Swelling in extremities
• Sleep difficulties
• Respiratory infections

August 7, 2025
A MyMyelomaTeam Member

Yes they are all wonderful at MDAnderson I just wished I had gone there a lot sooner than I did because in July I started having lower back pain so bad no Advil aleve or Tylenol would stop it then I got showered ready to leave to go to work and I began to feel so weak fatigued cold and back was killing me and just could not make it any further past my room. I just laid on my bed and wanted to sleep. I knew then something serious was wrong so I called in to work and let my boss know I was calling my doctor. Well I went to 2 neurosurgeons they X-rayed me said they didn’t know what it was so went to PC he said it sounded like multiple myeloma to him I just wanted to cry I was so shocked I thought I was in perfect health then went to oncologist he said he couldn’t find any multiple myeloma cells sent me for bone biopsy and they saw it so back to oncologist he said let’s wait and see which by this time it had been hurting my lower back for 5 months then Dec 2022 he finally started treatment. If I had just gone to mdanderson immediately in July 2022 I probably would not have all the pain in my back that I’m am now facing cause multiple myeloma caused so much damage to my spine and I have degenerative disease too.
But all this is to say please don’t wait don’t put off going to a mm specialist at a big city cause otherwise you could end up like me wishing you had. All my work friends kept telling me get your butt to MDAnderson and I put it off.

August 10, 2025

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