I declined SCT a year ago. My reasoning being, it doesn't prolong life, only puts you into remission longer. I have a TP53 gene mutation, which is a tumor suppressor gene and P1 deletion. The chemo drugs that they use for SCT are very strong chemo drugs and increase the probability of a secondary cancer. My cousin who had leukemia, had SCT and died 8 months later from a very rare, aggressive thyroid cancer caused by the chemo administered for SCT. I spoke to 3 different oncologists that agreed that in my case, I'd have a greater risk of getting a secondary cancer. The risk was not worth the benefit for me. I am still taking Lenolidamide and having infusions of Velcade 2 times monthly and Darsalex 1 time monthly. My main oncologist who only deals with MM wants me to stay on that schedule into the year 2028. My labs are doing really well except for the WBC, which is to be expected. I avoid gatherings, especially indoors and don't eat out in restaurants to avoid getting ill. So far, it has worked. Life has changed, but I've adapted so far. I'm a little concerned about longterm lenolidamide use after reading NickDiPaolo's post today regarding secondary cancers. Hadn't heard that before, but I will bring it up to oncologists. They are continually coming up with new, better treatments. Car T cell therapy is another option, but I'm not sure about the chemo drugs administered. If they are the same as the SCT drugs, I'm not interested. Good luck to all of us. Stay positive, be happy and keep on fighting this battle. God Bless.🙂

Diagnosed in March '24 at age 67 with stage 3 MM. A B2M of 5.56 and the 17p deletion and a few other bad markers. I turned down the SCT to continue working. 2 years later I was MRD negative-6 and off all meds. I have been asymptomatic the entire time and treatments were very well tolerated. Has been 2 months since I have been off all meds, bloodwork shows stable remission. Went for CT scan yesterday to make sure there is no bone damage or tumor growth.

Search for the Dana-Farber Dec 2023 Press Release. They directly state that when Induction results in a Very Good to Complete Remission, that it’s Safer to Keep the SCT “In Reserve” if All Else Fails.

They stated this before the success of Car-T has been a more common occurrence.

Dana-Farber was the originator of the SCT for MM (probably some 20+ years ago).

Also find the Determination Trial from Dana-Farber. It concluded that the Only Benefit of the SCT was a Longer Time before the First Relapse.

The Overall Survival Rate was the Same and those that had the SCT were likely to have more complications of a more serious nature.

The chemo of a SCT causes significant damage to the Microbiome of the Bone Marrow, that will take years to recover from and possibly even leaving permanent damage to the Marrow to return to Normal.

They, Johns Hopkins Hospital, Baltimore, turned me down for SCT in 2008. Age, I think. I asked her, how long do I have? 'Six months, maybe.' September, 2010, Kaiser Permanente took me off chemo since my bloodwork no longer showed signs of MM. I've done annual bloodwork since then. I'm 84, shooting for 100.MM did cost me 6" of spine and both knees.

Kaiser is both insurer and care provider. There is no benefit for providing unnecessary care to patients.

Thank you - this is incredibly helpful.