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I Have Stage 3 MM And Choose Not To Do SCT. What Are My Options?

A MyMyelomaTeam Member asked a question πŸ’­
Martinez, CA
December 21, 2023
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A MyMyelomaTeam Member

Because there are many new and upcoming treatments available, sct is old technology..many bad side-effects, and many times comes back...I chose not to do it to, been 4 plus years now of this crap,,to many Dr's push this,,it's not the only way to go...I suggest 2nd opinions and do your research...the cure is not far off...as I have said..I'm in process of the car t cell therapy...and I'm sure this is the path to end mutable myeloma...

January 12
A MyMyelomaTeam Member

My SCT failed. Car T has made me cancer free. πŸ™ July 23!

January 1
A MyMyelomaTeam Member

Everything comes with a price. The risk level of a person's particular MM characteristics and our general health makes our decisions unique to each of us. There are certainly more meds available now to treat MM without a SCT. But they all have their own varying side effects and tolerance can't be assumed. Ask what meds would be given as an alternative to SCT and their effects. I developed grade 3 neuropathy from just 4 rounds of initial VRD treatments before my SCT. It was mostly from the velcade. It was living in a hell of pin/needles/burning and weakness of my lower legs with balance issues. Improvement came only with lyrica, methadone, and a combo of supplements. But now I am permanently taking these things and permanently unable to walk normally. Any of the drugs that can cause further neuropathy are a no go for me at treatment levels. I am afraid I would be in a wheelchair and unable to control the pain. I have high risk Kappa. I chose a SCT because it would give me the best chance at a longer remission without taking multiple MM drugs. I am now 100 days post transplant and ClonoSEQ MRD Negative, thanking the Lord. My MM Specialist has started me on 10mg Revlimid alone as maintenance. Velcade would be better but he doesn't want to risk further neuropathy. Yes, studies show SCT does not make you live longer, but the question for me was does it help you live better?

December 30, 2023 (edited)
A MyMyelomaTeam Member

Read my story I was. Stage 3 well when they found my MM had not did SCT been averaging 15 months with cytoxan velcade and Dex have them twice because of the great response change to Darzalex and dex after first relapse then went back to them after Darzalex lost it power in 2021 and was back in remission in 4 months and my light chain was 436 and the normal is 8 to 26 and mine's came down to 18 in 4 months

December 21, 2023
A MyMyelomaTeam Member

Glad to here car t is the way to go sct is old.. I'm a out 3 weeks out from geting my car t cells back...

January 1

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