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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.
A MyMyelomaTeam Member asked a question 💭
Kingston, NY

I'm tring to figure out how do Dr figure out that you go on a maintenance treatment program? Is it just standard? I'm wondering because I just finished my first 6 week cycle of treatment. Then total I'll do maintenance? I am scheduled for bone marrow and PET ( if it gets approved). But how do you just do maintenance with out test. Maybe I need more treatment because it's still growning maybe I need nothing because it's under control. I just wondering is that what everyone does. Is it just… read more

September 7, 2020
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A MyMyelomaTeam Member

I got put on maintenance treatment (Revlimid) after SCT. Prior to SCT I was on VRD (Velcade/Revlimid/Dex) for 6 months. I Believe dr looks at results of both Bone Marrow biopsy results & PET Scan to determine the next step of SCT (If you decide to have one done). Treatments differ though, for each of us. Its good to ask your oncologist whats the plan he/she has for you. :)

September 7, 2020
A MyMyelomaTeam Member

Colleen. Congrats. You are in an coveted position, to go on maintenance therapy. Here is my layman understanding as to how they decide. It's all about the numbers. As an example, I a a "free light chain MM" patient. Each time they do the chemical analysis of my blood work they monitor among other things my free kappa, and also free lambda to see if they are in range. Additionally, they do ratio of free kappa to free lambda, to further determine if they are in range. Among other parameters, plus biopsy and CT scans to determine the levels of the myeloma cells in your bone marrow and throughout your body. Those help them determine if you are in or close to remission. On the basis of such analyses they move you to maintenance therapy, which is basically a reduction in the Chemotherapy medication. I hope others will pipe in here to correct or add to my understanding, but that's my best knowledge. Hope this was helpful.

September 7, 2020
A MyMyelomaTeam Member

Hi, since every case is different, you should ask these very valid questions directly to your Dr.

September 8, 2020
A MyMyelomaTeam Member

My doctor said he will reassess
After 9 months to 1 year. I have no tumors or bone lesions. They were watching my MGUS for 15 years before it developed into MM, so they caught it really in a very early stafe . I’m on Revlimed, Ninlaro and Dexamethazone

September 7, 2020 (edited)
A MyMyelomaTeam Member

Colleen, have you tried Sloane Kettering? My aunt has leukemia and has been living with it for 30 years. She swears by her doctors there. I believe they are in NYC which is close to where you are. You seriously need MM specialists on my team. I see the difference every time I have an appointment with my doc at MD Anderson. She doesn’t just change out meds or put my on things without a very good reason based on data. Sending love and strength your way! 💕

September 12, 2020

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