Post SCT Maintenance | MyMyelomaTeam

Connect with others who understand.

sign up Log in
Resources
About MyMyelomaTeam
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.
Post SCT Maintenance
A MyMyelomaTeam Member asked a question πŸ’­

Hi Everyone
I am +79 SCT and two weeks ago my Oncologist told me my bloodwork was normal
However, during an appointment this week, she said she wanted me to do maintenance of Revlimid,+ Darzalex 2X/week for four months then once a month. That's more than the 1X/week treatments I was getting prior to SCT! I asked her why would she want me to do such extensive maintenance if my bloodwork is normal? She says "all data points to longer lifespan with said maintenance". I'm getting a BMB in a… read more

posted August 30, 2023 (edited)
β€’
View reactions
A MyMyelomaTeam Member

Thanks, everyone.

I should have mentioned in my original post that I was diagnosed in late November of 2022. I'm not considered high risk. Before SCT I did 6+ months of weekly subQ Velcade, Darzalex, plus pill forms of Cytoxin and Dex (CyborD protocol). Then just prior to SCT I had a BMB and my Oncologist told me I have no evidence of disease. Even with no evidence of disease I still chose to do the SCT because I was advised that it would prolong remission.

George, I'm not sure how "deep" my remission is. What does depth of remission mean and how is it measured?

Donna and Cynthia, I presume Onc. is doing MRD testing on my upcoming BMB (isn't that the purpose of doing the BMB?), but I will double check. Thanks for pointing this out. I really loathe the idea of having to do twice weekly maintenance if I have MRD... I want to have a better quality of life (travel,etc.) without having to be strapped to a twice weekly visit to a cancer center!

Thank you again for your replies. Very helpful!

posted August 30, 2023 (edited)
A MyMyelomaTeam Member

It seems everyone has a different experience with maintenance. I too have a more aggressive myeloma but after my SCT I had 12 weeks of and was started on the maintenance of lower dose of Kyprolis and Revlimid ,however I had a rare reaction to the Kyprolis and opted to just take the Revlimid 10mg 21/7. I chose not to add anything else. Its been over 2 years and my last BMB was negative !.I am trying to go off the Revlimid for 10 days and hopefully down to 5mg. I have some numbness and fatigue only from the drug. I do take a lot of herbs and supplements. Everyone is different and so are the doctors views

posted August 30, 2023
A MyMyelomaTeam Member

Good point, they do MRD testing on my bone marrow biopsies to see if I still have residual myeloma cells. Ask your doctor if they are doing MRD testing on your BMB. πŸ˜‰

posted August 30, 2023
A MyMyelomaTeam Member

You need to ask how deep your remission is. Maintenance is usually based on your stage and your response to treatment. I'm on Revlimed 10mg 21/7. I asked how long I would be on maintenance and the answer varies.

posted August 30, 2023
A MyMyelomaTeam Member

I’m thinking Minimal Residual Disease and Bone Marrow Biopsy. I have had both.

posted September 1, 2023

Related content

View All
Maintenance Therapy After Stem Cell Transplant
A MyMyelomaTeam Member asked a question πŸ’­
Please Speak Up, What And Who Is Or Has The Longest Remission/ Survival From MM?
A MyMyelomaTeam Member asked a question πŸ’­
Remission After Stem Cell Transplant
A MyMyelomaTeam Member asked a question πŸ’­
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in