I'd like to know how you made the decision to stop the MM Meds.
Was it your choice or doctor recommended - any details would be great.
I'm now MRD Negative. My Doc has placed me on MM Meds holiday. Now with the Jan 2022 Report about MRD-SURE, I plan to stay in Labs Monitoring Mode with no MM Meds and only add back Revlimid, if a future Labs indicates the need. Keeping my fingers crossed.
MRD-SURE Link:
https://www.cancernetwork.com/view/mrd-adapted-...
Thanks,
Larry2
Since MM is currently not curable but treatable, no oncologist should tell a MM patient they are “cancer free”. Instead they should say MRD negative or in remission. I was told by my UCSD MM specialist that I will always be on some type of medication even in remission
I was told at diagnoses that this cancer is NOT CURABLE but treable. I have been in treatment since April 2020. Took my M spike number from 3.75 to 0.28 and I am currently on the controlled treatment stage. Which means I take Rx Revelimad 10mg three days a week Monday Wednesday and Friday. Currently I have 13 months of blood draws results in NOT DETECTED. However my doctor has NEVER talked about stopping my Rx Revelimad.
Amen and Amen. Jack
I was on maintenance Revlimid for 5 years and one day I came down with a bacterial infection in my back and had to be hospitalized. They took me off Revlimid and had to be on an IV antibiotic for 2 months. I was tested after I was done with the antibiotics and deemed in Remission. It was my choice to stay off of Revlimid and have been now for 5 years.
Revlimid is poison, but it’s the go-to drug for doctors. I don’t even think they think about it. It is responsible for ruining my heart so I now live with LongQ syndrome and I have a pacemaker/defibrillator planted in my chest. I am currently on Darzalex FasPro, but I will come off of that when my next bone marrow biopsy comes back MRD negative. I will be 70 in less than a month, and I want quality of life.
My oncologist told me even if I was MRD negative they would not change my treatment
I am on ninlaro for maintenance