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NKP64
Multiple Myeloma Discussion • March 4, 2024
Experiencing Elevated Liver Tests on VRD?
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I'm curious if anyone has noticed any impact on liver functions during VRD treatment. No other symptoms were observed, but during our monthly liver function tests, elevated levels were detected for SGPT/ALT, SGOT/AST, Alkaline Phosphatase, and Gamma Glutamyl Transferase (GGT). Any feedback would be greatly appreciated.
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puceJellyfish
Multiple Myeloma Discussion • March 4, 2024
Experiencing Cravings & Weight Gain Post-SCTP?
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Hey there, I have a question. I'm now 160 days post SCTP, shortly after getting home I developed a strong craving for sweets, especially at night. Is this a byproduct of a new SCTP? Is quick onsets of hunger, bloating and weight gain normal after SCTP? Deno
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Annborell
Multiple Myeloma Discussion • March 1, 2024
Pomalyst First Cycle: Did Numbers Go Up?
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I recently started Pomalyst after failing on KrpolisDaraDex. We added the Pomalyst and I just finished my first cycle. I am 12 months post ASCT and failed on Revlimid maintaince before starting current therapies I mention. For anyone who is on or went on Pomalyst did you see a response within your first cycle of treatment (3 wks on 1wk off). I have Kappa Light Chain myeloma and my numbers went up not down after this first cycle. It wasn’t a big jump (122 to 150) but not in the right direction.
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Annborell
Multiple Myeloma Discussion • March 1, 2024
Pomalyst: Response After First Cycle?
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I recently stared Pomalyst after failing on KrpolisDaraDex. We added the Pomalyst and I just finished my first cycle. I am 12 months post ASCT and failed on Revlimid maintaince before starting current therapies I mention. For anyone who is on or went on Pomalyst did you see a response within your first cycle of treatment (3 wks on 1wk off). I have Kappa Light Chain myeloma and my numbers went up not down after this first cycle. It wasn’t a big jump (122 to 150) but not in the right direction.
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SetyBlue
Multiple Myeloma Discussion • February 29, 2024
Comparing Revlimid Maintenance Doses: Studies?
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Are there any studies comparing efficacy of different doses of Revlimid (lenalidomide) in maintenance? I am specifically interested in 10mg vs 15mg, but would also like to know 5mg vs 10mg vs 15mg during long term maintenance.
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slhenk9
Multiple Myeloma Discussion • February 28, 2024
Coping With Swallowing Issues & Reflux?
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my husband has been on revlimid, now is on pomalyst,dara,dex.....he has acid reflux issues, his throat seems to get a pill stuck occasionally, and sometimes swallowing goes down wrong tube...he deals with it(takes applesauce with pills) but we are going to a gastro doctor who is going to do an endoscopy and maybe stretch his esophagus....(he has had this done before)...starting to feel like this is just the way of life for him and to deal with it till he can't...anyone else with these issues or any suggestions....also has back spasms, knifing pains sometimes and has had mri's on his back
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Ligeross@3000
Multiple Myeloma Discussion • February 28, 2024
Sharing My 20-Year Journey & Hope for Future Research
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I was diagnosed with stage 3a mm in 2004 at age 45. I researched the best available treatments and learned that double or tandem transplants gave the best long term results. I went to the UAMS MIRT center in Little Rock, Arkansas and got on their TT3 clinical trial which offered tandem transplants. I went into complete remission for 14 years. In December 2022 I received Car T Carvykti and have been in remission since. I continue to look at the latest mm research. Bispecific antibodies are promising, but the best research I can find in 2024 is CAR T CD 229 which kills plasma cells AND the mm stem cells. Killing the mm stem cells in theory should produce long term remission and possibly a cure because these stem cells are what regrow the cancer. CAR T CD 229 is preclinical at Johns Hopkins in Baltimore, MD, but they are planning to do clinical trials. If CAR T CD229 becomes available for me in the future, THAT is the treatment I will want because of its potential “cure” by killing the mm stem cells. For now, bispecific antibodies and the latest drugs available are what is out there. What I recommend is to get on one of these latest treatments or clinical trials and keep up with the research. I await the start of the CAR T CD 229 trials.
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Qunbin
Multiple Myeloma Discussion • February 28, 2024
Join Our In-Person Baltimore Meeting: March 16
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Baltimore-Amyloidosis Support Groups Meeting-Face-To-Face -Saturday, March 16, 2024 AL Will Meet In the AM Registration: 8:00-9:00am AL Meeting 9am to 11:30am LUNCH FOR ALL 11:30 to 12:30 ATTR Will Meet in the PM Registration - 11:30 to 12:30 ATTR Meeting 12:30 to 3pm GUESTS: "Amyloidolgists" from Johns Hopkins & Georgetown (MedStar)
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NKP64
Multiple Myeloma Discussion • February 28, 2024
Pausing Treatment for Lenalidomide Rashes?
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Just a couple of days before, my father developed some rashes but no itching and no fever. Just simple red marks which seem to have deteriorated after that. The doctor has advised me to hold Lenalidomide for now and meet a dermatologist. Is it often the case there, that we pause the treatment medications when any concerning side effect is noted till it is rectified?