Hi Darrell,

Get a clonoSEQ test - preferably from a Bone Marrow Biopsy. If you’re Negative at 10 -6 (no cancer per million cells), lookup the MRD-SURE Report (web search) and discuss with your Doc about being on Monitoring without any MM Meds.

This is valid for zero and one high risk factors, according to the MRD-SURE Study Report.

My Story @A MyMyelomaTeam Member has a link to a video by Dr Costa where he explains the benefits of being off All MM Meds, if you’re 10 -6 Negative. Secondary cancers is one of many reasons to be get off All MM Meds, if you qualify. Avoiding Jaw bone death from Xgeva or Zometa (has happened to many on this forum) is another. There’s also references at my Story as to the benefits of C3 Curcumin. See the link to the New NIH Study released this year about C3 Curcumin.

In many cases, the practices of the “standard of care” are keeping people on MM Meds far too long. New Case Studies released just this year are proving Less is Best, IF you’re in Complete Remission at 10 -6. This year, there are posts of More and More People that are Transitioning to just Monitoring at their Doctor’s suggestion.

All the Best - Larry2

Mentioned Users

A MyMyelo...

I have been on Revlimid 10mg for about a year now. I take it every day and Zometa every 3 months. I am MRD negative. Doctor told me I would stay on maintenance for approximately 2 years. My specialist is saying 3 is the lucky number. They do talk so I am sure if something changes they will tell me.

Hi Darrell - in case you’re not familiar, MRD means Minimum Residual Disease. Complete Remission and MRD Negative are considered to be true when the NGS (next generation sequencing) method from clonoSEQ returns a value of zero cancer cells per million tested. This is currently the most sensitive testing method available.

Wow. I feel for you. I only take Velcade. One of my oncologist recommended that I take Revlimid as well but my Transplant oncologist said it’s to much for maintenance if the transplant did its job. So far so good.

I’ve been on maintenance for 4 years after my SCT. Two days in a row every other week with Kyprolis and Dexamethasone. Revlimid 21 days out of 28 days. Plus a miriad of other supporting meds, like a daily antibiotic, an antifungal, pantoprazole, etc. I will be till I die. Feel like crap for 3-4 days after my infusion, then better, though never really good, with a number of side effects. My MRD is around 86/million and has been since my SCT.