I was diagnosed in January w/ Lambda light chain myeloma. I also have +1q chromosomal abnormality. I'm currently on the Quad therapy and have a bone marrow test next month at Dana Farber. I only get a half hour with my Dr. during the whole day there of testing. What are the most important things to ask him? I know i have to decide whether or not to proceed with a stem cell transplant or wait it out, depending on the MRD results.

Hi, Hope all is going well. I had my SCT on July 08th, I’m +21 days. My question is “How long does the metallic taste last?” I cannot eat anything. Any help would be appreciated. Thank You Sal. L

My response to anyone seeking advice on MM is to get to the best docs in your area!! I travel to Dana Farber (now Mass General Brigham) in Boston, where the docs there research and treatl only ONE type of malignancy: in my case,multiple myeloma Stage 3. Absolutely NO comparison with the local doc I see! I had a SCT in 2016 and am maintained on Revlimidcm 15 mg by mouth 21 days on and 7 days off. Fortunately, the cost of the drug has come down; after.soaring to $18k/month, it went generic and is now around $7k/month. Medicare has covered everything, with the exception of medication, for which I receive a grant from the LLS.

I was diagnosed with plasma blastic myeloma in 2022. I had bone marrow transplant in May 2023. I am on darzalex Faspro treatment and my oncologist plans to stop it in November. I have minimal side effects and want to continue treatment Any feedback will be appreciated

Common question…to stay in remission should I stop or stay on treatment. Join us to learn more. https://healthtree.org/myeloma/community/events/jul25-myeloma-treatment-remission

I had a question. I was diagnosed with IGG high risk Myeloma about 5 years ago and went through SCT about 3 years ago. I have refractory disease and never quite got a fully remission. Was on Rev, Velcade and Dex afterwards and stayed fairly stable. My M protein has begun to spike some recently and treatment was changed to Elotuzumab Infusions(weekly for 8 weeks and then monthly) and Pomalyst (3 mgs) for 21 days a month. I am experiencing a fair amount of fatigue and mental fogginess at times-especially after Elotuzumab Infusions. My oncologist stated she has never noticed fogginess in her patients. Although, it is listed as a side effect. Just curious-if anyone out there has had some of these treatments and your experiences with any of these treatments. Thanks so much. :)

For those with SMM or MGUS who’ve gone to one of the HealthTree events, have you found it helpful? I know they are open to all, but just wondering how much will be relevant to me 🤷🏽‍♀️ (I’m low risk SMM.. There’s a community event about 1.5 hrs away from me; I’m registered but now I’m second guessing 🤔)

I am new to this and trying to learn. My M-spike is at 1.70 g/dL, my lambda light chain is 87.02 mg/L, Light chain ratio is .21, and my IgG level is at 1962 mg/dL. Has anyone found an easy way to explain this somewhere? Last visit in May my doctor would only say he was concerned. My blood draw this week did not improve and I met with him next week. I am, of course, worried.

Good article in MedPage Today for newly diagnosed MM patients. I tried to copy to copy link... not sure it'll work. If not, go to: Medpagetoday.com and search for Multiple Myeloma. https://www.medpagetoday.com/medical-journeys/multiple-myeloma/116615?xid=nl_mpt_DHE_2025-07-24&mh=7cb5582060fac0f46b63891780ce4522&zdee=gAAAAABni7E3VJ_LzBSeg33XHY4aZiRDJhnJKKmj9y2twwxE9meh7UaJ1W4uRJoOzotRNN5pgyI5GZmXLK2y0QlFSXz_y4M7eRERagx-WoW8NFa7jdyFFuo%3D&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Evening%20-%20Randomized%202025-07-24&utm_term=NL_Daily_DHE_dual-gmail-definition

After diagnosis 4/9/21 at 75, I started on Dara/Rev/Dex. My M-spike, light chains and all other lab values gradually shifted into the normal ranges. In May of 2023, with my M-spike at zero, we decided to stop the Rev, Dex and daily aspirin (continuing the monthly Darzalex Faspro injections). Since that time my M-Spike has slowly increased to .37 as of 1/17/2025 (light chains in normal range). My oncologist has suggested going back on Rev or maybe Pomalyst, (we’re waiting a couple of months to see what happens). **Update 07/24/2025** My M-Spike is gradually rising now up to .53. We have decided to add Pomalyst 21/7 and Dexamethasone once a week. I hate to do it, but the idea is to catch it before it runs away. Back to the brain fog, constipation, fatigue and bruising, oh well it is what it is, have to deal with it. I was on Revlimid originally, does anybody know if there are differences in side effects with the Pomalyst.