I am about to complete my 20th infusion (5 cycles). I’m being offered a Stem Cell Transplant (SCT) during the last half of October.
My question is, if SCT does not extend longevity, what are the significant benefits of receiving a SCT as opposed to establishing a maintenance therapy without a SCT? Dr. Berenson is the leading advocate against SCT but the field of myeloma specialists is divided at about 60 percent in favor and 40 percent against. I believe the number in favor is actually higher… read more
Once my clonoSEQ test results came back MRD Negative at 10 -6 (none in a million cells tested), my Doc placed me on Monitoring mode. No MM Maintenance Meds as per the MRD-SURE Study. He’s going to do quarterly tests this year and reduce next year. So long as I stay Negative, no meds.
In hopes that it helps, I continue to take 6,000mg C3 Curcumin daily. Plenty of references to C3 Curcumin Studies on this Forum.
Here’s the Link to the MRD-SURE Report.
The more I/we learn about MM treatments and opinions, the more I get confused. My wife elected to go through SCT in Feb. of ‘22. She is in excellent health other than MM, and she IS on maintenance Revlimid, and Zometa once a month. And she/we were told this was the best time for her to do this as she is very healthy and no other issues. She IS MRD negative and doing very well. If she had waited, she might not have been ABLE to do SCT. I believe that we are getting expert care here at our cancer center in Rochester, NY, and have full confidence in our medical team and SCT at this time for her was their advice. I would like to learn more about the MRD-SURE Monitoring mode, AND continue to learn all I can about MM in general, realizing there is an expert divide on issues and treatments, and not a “one-size fits all” approach to treating MM. I wish everyone well as we all travel this journey. Hugs and prayers to all and your families.
Hi Dave5 - I elected to not get a SCT (details in my Story). Started Stage 2 - 80% bad plasma. My Consulting Doc at John Hopkins said to me Now or 3 years from now wasn't going to change my Overall Survival Rate. Decided to Postpone. Completed Induction in 2-1/2 months. Then on maintenance 3-1/2 months later tested MRD Negative (10 -6 - same goal of a transplant). Doc placed me on MRD-SURE Monitoring mode - taking no MM Meds.
All the Best in your choice and progress going forward.
Agreed - the more you learn about the options for MM treatment the more confusion it can bring! Throw in every individual's unique response and it further muddies the water. Husband Ron was diagnosed at stage 1 and remains asymptomatic. We were referred to Dr Berenson for a 2nd opinion on treatment and found him very helpful. Because of Ron's stage and overall health he didn't press sct and agreed with Ron's oncology hematologist that rvd was the way to go for the time being. 3rd opinion doctor at City of Hope strongly advocated for sct. However, after completing the first 8-cycle regimen the same doctor advised against at this time it because of Ron's positive response to rvd and his age. After a month-long break from all meds for vacation Ron's numbers didn't bounce back to doctor's satisfaction, so he's now on darzalex infusion, oral pomalyst and dexamethasone. 2 more infusions in this cycle and we'll see what happens. All indications so far are that the results are as hoped for.
2019 in January I did do the stem cell process.. Only because my daughter was pregnant with my 1st grandchild.. I wanted to wait and see if maintenance kept my numbers down.. I don't gamble, But once you have cancer you do gamble all the time with your life.. Stem cell process Is obviously life changing maybe for the better and a lot of times for the worst.. I did get back on my feet because I'm a fighter, but what it did to inside, can never be changed.. Because this cancer and this cancer and the treatment is new I feel like a Guinea pig Because this cancer and this cancer and the treatment is new I feel like a Guinea pig.. The medical profession just wants to see who's on wad and who lives longer..
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