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
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!
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
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. π
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.
Iβm thinking Minimal Residual Disease and Bone Marrow Biopsy. I have had both.