Please take a look at the latest news from the Nov 2022 ASH Conference - do a Web search for the Video

MRD2STOP

This presentation is the results of a multi year study where the current recommendations is to Stop All MM Maintenance Meds once a person reaches MRD Negative, based on the clonoSEQ testing method of 10 -6 - Complete Remission.

This info was brought to my attention by team member @A MyMyelomaTeam Member - thanks for this great info - the Docs are coming to realize that staying on MM Meds long term is not a good thing.

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A MyMyelo...

Well, that's why people get clonoSEQ tests - its completely definitive as to how deep of a remission you have. Negative at 10 -6 is a very deep and very durable Complete Remission. Its what getting a SCT hopes to achieve but SCTs are only 50 to 60% effective. Since I'm 10 -6 Negative, Its why my Doc took me off all Maintenance Meds.

Hi Mepapermaker1 -
When you say Kappa & Lambda chains, are you saying this is why you are not in complete remission?
If so, is it that your levels are higher than Normal Range or that there are any levels at all. There's nothing wrong having them low or within the Normal range.
Did you ever get a recent BMB after treatment to know if there's any percentage of bad plasma?
With No MSpike and a clear PET/CT, why not get a blood based clonoSEQ test to see if you're in Complete Remission?

If you're in Complete Remission at 10 -6 Negative, then why do a SCT - you've already arrived at your destination.

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. 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 (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.

Mentioned Users

A MyMyelo...

I started with 10mg revlemid with my maintenance cycles...it worked for 4-6 months, until my blood spiked...they promptly put me on 15mg dose, and is where I'm at today...they determined that I have the lesser volatile MM, and unless something changes, I will be on this therapy for the foreseeable future...I have collected my stem cells, for a potential SCT, I only have a couple years left to use what I have collected, then age becomes a factor...but as time goes on, I would look at all possible therapies before suppressing my body for a SCT...I'm shooting for at least 20 years with this therapy, I will though, take what I get!...stay healthy! ..😊...