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

Has anyone tried Red Light Therapy to help with boosting WBC, improving joint and muscle pain?

Anyone have severe muscle weakness, tightness in there legs a couple months post autologous SCT?

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.

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.

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.

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

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.

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)

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?

Hello, I am in my second month of maintenance after SCT in August 2023. I have IGG Kappa. At the end of my first month my kappa (and lambda) levels were elevated. I had gotten COVID at the time as well as a bad ear infection and my doc attributed the raised levels to that. As luck would have it, I ended up getting the flu around the time of my second month testing. Kappa and lambda levels are higher and now they have detected free kappa in my urine. Could this be the start of a relapse? Or could this again be attributed to something else (the flu). Thank you!

Hi everyone, has anyone had multiple myeloma and at the same time myelofibrosis. My mom was diagnosed with this rare case and she is being treated with KRD treatment. Her response has been slow, her hemoglobin is in 5,9 so she had blood transfusion and he palettes are in 43,000 which is better because two weeks ago she was lower than 10,000. Any recommendations?

Hi, I'm new here and wondering if there is any sort of virtual support or discussion group? Or is anyone else interested in having one? I've had MGUS for about 10 years along with several genetic disorders (probable mastocytosis, hereditary alpha tryptasemia, hypogammaglobulinemia, Ehlers Danlos, Grover's, pilomatricoma, etc). Basically I don't make enough normal antibodies and I'm allergic to everything. Makes me extremely hard to treat. I'm new to Colorado and have not been able to find physicians who are familiar with the interactions of what I have. Plus the extremely dry air and high elevation here seem to make everything worse. Any chance that anyone knows a geneticist who treats? A rare disorders specialist? I'd welcome any suggestions, or hearing from anyone in a similar position. And a support group might be lovely. Thanks! My best to all.

Has anybody not been able to have enough stem cells collected for an autologous transplant. It’s a month since GCSF and Plerixafor, they only managed to collect just over a third of 1 million today. They’re going to try again tomorrow but I wondered what would happen if they just can’t get enough. Thanks and I hope you’re all keeping well. Janine