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

For anyone with newly diagnosed MM, I would suggest looking into enrollment in the Cartitude 5 or Cartitude 6 clinical trials, both of which test CAR T-cells as an initial therapy. CAR T-cell therapy has been around for several years and has shown good results with relapsed and refractory MM patients. I'm enrolled in Cartitude 5 and scheduled for infusion of my genetically modified CAR T-cells this Monday. The goal is to prolong my current remission. I've also had stem cells extracted and stored for possible backup therapy. Good luck to my fellow MM warriors!

I have a question about multiple consecutive ASCTs. I’ve been reading on this site that some people had two or even 3(!) SCTs in the recent years. I know that two consecutive SCTs used to be standard practice years ago, but then it was found that it didn’t work better than a single SCT in the long run, so the standard practice changed to a single SCT, especially with new treatments such CAR-T and bispecifics available for refractory MM. Given all the new available treatments before and after SCT, why would someone still go through multiple SCTs?

Greetings fellow MM warriors and Thankyou for sharing your experiences. Just started my treatments this week with the RVD and they will also add Darzalex at my request next. I have a question since the only side effect immediately noticed was Hiccups! Like frequently and especially bothersome at night. I think it is from the Acyclovir that they gave me as a rash side effect precaution… no rash symptoms yet. Any thoughts or suggestions?

Has anyone been diagnosed with the 4-14 mutation? Just wondering what your journey has been like and what treatments you have had. My husband had Dara+Dex+Velcade for 4 months, came back and had a stem cell transplant that lasted 7 months, came back again and had a car-t transplant that lasted 5 months and now is getting Talquetamab.

I went through the Car-T transplant in February 2023. It started out very well but now has stopped working. They are now talking about bio-specific antibodies. Has anyone gone through this ?? This is what I Love about this website because folks are willing to listen and then give up information !! I have other options but this is what the doctor advises. Just curious about side effect and other things !! We are going to whoop this. Love all of y’all and praying for you all !! Remember, never give up because new drugs are being made every day !!🙏🙏🙏

Interested to hear if anyone has had a similar experience or explanation of how this may have occured. I was diagnosed with smoldering myeloma in 2016 that progressed to full blown disease in 2021. I was found to have an IgG lambda variant. Standard therapy (Revlimid, Darzalex, Velcade, and Dex) got my numbers down. Covid delayed my ASCT until Jan of 2023. Afterwards I initially went into complete remission but then routine followup in December of 2023 showed an uptick in my M-spike to 0.2. Protein electrophoresis still showed no evidence of the IgG lambda clone but now showed a spike consistent with the presence of an IgG kappa variant. There was some thought that may have been somehow related to an RSV infection I had just experienced but labs repeated mid February 2024 showed similar findings with still no evidence of the IgG lambda clone I had originally but a continued spike consistent with an IgG kappa variant. I'm scheduled for restaging with a repeat BM and PET/CT and further treatment based on those results but I am curious as to where this IgG kappa variant came from especially in light of what appears to have been an otherwise successful ASCT. Any thoughts?