ripnlips, I think if your health is good and you are not experiencing any symptoms or side effects from current treatments, there is probably no reason to get a SCT. But most people will listen to their specialist which will most likely recommend an SCT. I think anything you do will have risks, you just have to do your research, educate yourself & decide for yourself what risks you are willing to take based on your condition. Time will tell if you made the right decision, meanwhile more treatments will become available hopefully giving us even better options. No one knows what are all the right answers, but sharing our experiences show us what some paths could lead us to.

I needed a SCT because my chemo just wasn’t cutting it so I had one too help get my numbers down and I had 5yrs. of remission after my first one and 7yrs. after my second one so I think it was worth it but the heavy duty chemo they give you really knocked the crap out of me for a long time but now I am doing fairly well. It’s definitely a personal decision.

The usual induction treatments RVD were not getting my numbers down. Kyprolis, Pomalyst and dex didn't work. High dose Cytoxan didn't do anything, but give me sepsis and a two week hospital stay. Pomalyst, Darzalex and Dexamethasone did start getting my numbers down slowly. Transplant reduced my numbers by 90%. So it was a good option for me. It's a personal decision based on our myeloma genetics and the expertise of our myeloma specialists.

Thank you for all the responses so far. Definitely, if the induction therapy is not working, you need to try something else. And back then it was SCT. I wonder if oncologist now recommend Car-T or BiSpecific Antibodies instead of SCT.
@A MyMyelomaTeam Member . Thank you for all the information you provided. It's the same source I have been referencing. Dana-Farber and Dr. Richardson. I am very glad to see that Dr. Richardson, who was the pioneer in SCT treatment, has reevaluated the results and has modified his recommendation for SCT treatment.
And this just shows how lucky we are to now have so many more treatment options then just a few years ago.

Mentioned Users

A MyMyelo...

Please read Dana-Farber's Latest Press Release from Dec. 2023.
https://www.dana-farber.org/newsroom/news-relea...

Doctor Paul G Richardson Now says - If you have a Very Good to Complete Response, Do Not Get the SCT Early. He says Keep It In Reserve due to the SCT causing too much damage to the Immune System. He Say, the SCT will typically result in Far More Frequent Infections of a More Serious Nature.

As of July 2024, DarzFasPro + RVd is now the FDA Standard of Care for Newly Diagnosed MM. I was fortunate in 2021, that during our Second Opinion at John Hopkins, I was told to get DarzFasPro - It would result in a Quicker and Deeper First Remission.

Back then, I had to change Oncs to get it - I was actually back to Normal Labs in 6 weeks but continued with 12 weeks Induction and 16 weeks Maintenance. At 7 months, once I was Correctly Tested for a False MSpike (via Lab test #123218) that DarzFasPro produces in just 6 weeks, they realized I was MRD Negative and I Stopped all MM Meds.

November 2024 will make 3 years. Even though I've had a Bone Lesion Event a Year Ago (very quickly resolved), my Marrow has stayed Cancer Free and I remain MRD Negative without any MM Meds. I'm now a year on a Plant Based Diet with excellent Labs as a result.

All of this from Stage 2, 80+% bad plasma, t4;14, 5.2 MSpike. No SCT and No Stem Cell Collection (I'll never do due to the chemicals involved and their damage to the Marrow microbiome - as per Dr Berenson-he's performed No SCTs since 2000).

DarzFasPro from the Miracle MM Med I was told it could be. Unfortunately, continuous use of it can deplete our Natural Killer Cells, keep our Ig Levels suppressed and quickly stop being effective on MM. After just a few months, DarzFasPro needs a year off to allow your Natural Killer Cells to replenish and your remaining MM (if any) to become sensitive again.

As for DarzFasPro - Too much of a Good Thing is Not a Good Thing and a SCT is Best as a Last Resort.

DETERMINATION trial subgroup analysis suggests potential strategies for individualization of myeloma treatment | Dana-Farber Cancer Institute

https://www.dana-farber.org/newsroom/news-releases/2023/determination-trial-subgroup-analysis-suggests-potential-strategies-for-individualization-of-myeloma-treatment