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MomMom
Multiple Myeloma Discussion • February 1, 2024
My Positive Story: Remission Off Revlimid
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I had my SCT in July, 2018. I went immediately into remission. I was on revlimid for about 1.5 years. I had terrible spasms and cramping that I believe was caused by the revlimid. I went off revlimid in June, 2020 and my numbers have remained stable with no sign of the Myeloma. So far I've been getting lab work every 3 months with no problems as of yet.
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khakiSheep
Multiple Myeloma Discussion • February 1, 2024
Feeling Low: Dex Withdrawal or Plerixafor?
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I'm having my second stem cell transplant at the beginning of March. It was meant to be this week, but they didn't manage to collect enough stem cells. I was given GCSF for 4 days and then a Plerixafor injection the night before the second day of collection. I was on Carfilzomib with 20mg of Dex once a week prior to this. It's only been two weeks without Dex but I feel so low. Does anyone know if this can be withdrawal effects or a response to the Plerixafor? I'm normally a very optimistic person and don't really get these feelings of sadness. Thanks.
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Kneyed
Multiple Myeloma Discussion • January 31, 2024
Newly Starting RVD: Seeking Experiences & Advice
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I got diagnosed the beginning of last year and have spent the rest of the time getting second, third, fourth opinions. I spent most of December in the hospital with Covid and Pneumonia; the doctors convinced me to start Chemo. I talked to two men recently who have gone through the RVD treatment and are on maintenance now. What will be my experience ? Every body is different… How much does it cost? Ever body is different… 68 years old retired on my organic farm living the dream Still. Any more advice?
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Bobby
Multiple Myeloma Discussion • January 30, 2024
Sharing My Journey to the Cartitude-5 Trial
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Hello and Best Wishes to All of You! I was diagnosed with MM in July 2023 and have been through eight cycles of VRD. Fortunately, I'm currently in remission, though PN and some back pain continue to be problems. I've also enrolled for and been randomized into a CAR-T therapy trial called Cartitude-5 (using already FDA-approved Carvykti from Janssen/J&J) for newly-diagnosed MM patients. The goal of the therapy is to prolong progression-free survival (i.e., PFS or remission) without maintenance Revlimid therapy. I'll be reinfused with my genetically modified white blood cells on February 20 and stay in the hospital for two weeks afterwards for observation. Fingers crossed.
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SetyBlue
Multiple Myeloma Discussion • January 30, 2024
Managing Velcade Injection Site Discoloration?
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I am now in the maintenance stage of my myeloma journey. The maintenance includes Velcade (bortezomib) injection every two weeks. I get a skin rash at the injection site. If done correctly, the afflicted spot is relatively small, but it’s still a bother. I use Benadryl cream for the first 2-3 days and it helps with itching and initial healing. I would like to know if there’s another topical cream or something that I can use once the initial redness and itching is gone to help with faster removal of the skin discoloration. Any suggestions?