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'm doing plenty of research about gut bacteria and how its type of strains can either help to keep MM at bay or contribute to its progression. Once I've compiled all of my reading into info that I can clearly express, I'll Post my findings.
More than just MM Meds, we can contribute to our success. There's plenty of Case Studies that on the subject matter.
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.