my husband is on pomalyst, dara and dex for 1 1/2 yrs.....his glucose and potassium started to rise...trying to watch what he eats and drinks alot of water.....any other suggestions....he goes in friday for labs to ck on his levels

I am new to this group. I am 58 years old. I was diagnosed with MGUS in 2017. My Kappa Lambda ratio then was about 9. My M-Spike was around 1 and my PET Scan was normal. My Bone Marrow Biopsy showed 5% cancerous plasma. My numbers slowly increased in general for first 3-4 years. Since then the pace of increase has accelerated. My last labs showed my ratio passed 100 (118) and M Spike is at 2.35. Had a PET Scan in October 2024 which was clear. I have not had another bone biopsy since my first in 2017. My myeloma doctor at MSKCC said if my Kappa goes above 50 (at 46 now) he will order one. He said with my hemoglobin at 13 he didn't think there was heavy involvement in bone marrow. I feel fine with no symptoms and swim daily for 45 minutes. Perhaps I've been googling too much but I thought that a ratio above 100 meant active myeloma but honestly I have no idea if I'm considered at MGUS or Smoldering stage. My doctor at Sloan said light chain ratio is not the most important marker. I should mention I have Ig G Kappa. Anyone else have similar numbers and also not taking treatment? Just reading about all the GI issues with Revlimid are worrisome to me as I know this is used in induction therapy. Has anyone in here not experienced GI issues using Revlimid? Thanks in advance for your comments.

Any ALL CAR T warriors out there? I work with a group called Find A Cure Panel that specializes in patient research for rare and serious diseases. Find a Cure is seeking ALL (Acute Lymphocytic Leukemia) patients who have had CAR T therapy for a brief opportunity. This research is easy to participate in. It's one 60 minute confidential and anonymous call with one moderator asking about your experience. If you are an ALL patient and you do the call, FACP will pay you $200 via venmo, paypal, zelle or mailed check. If you're interested in participating, then please text FACP at 323 717 8117 or email them at info@findacurepanel.com and reference ALL / Car T - HT

My wife has always accompanied me to all but 2 of my infusions and my daughter was with me the other two. I can't imagine doing this journey without them with me even though I'm in maintenance and this is "routine" now. Almost every trip to the infusion center there are people hooked up to machines and IV drips sitting there on their own and my heart goes out to them. Has anyone here done this on their own? If someone else in the infusion center approached you out of the blue and offered to sit with you or chat, would you welcome that?

I was diagnosed with myeloma in November, started quadruplet therapy (DVRd) in mid December. No problems with the infusions so far. However, I started Revlimid on Dec 24, spiked a high fever (103+) with chills 5 hours later. Eventually had to go the hospital because it wouldn't resolve and tested positive for Covid. Skipped a week of all treatments to recover and restarted last Friday. Similar to the last time, I started spiking a fever with chills several hours after taking Revlimid, but controlled it with Tylenol. Same thing Monday. Tuesday it got worse and my symptoms weren't resolving. My doctor thinks I may still be reactivating the Covid that wasn't fully resolved so we are skipping another week of treatments to take Paxlovid and try to resolve it. I'm curious if this is potentially an inflammation purely from the Revlimid? Has anyone else experienced something like this? Thank you!

Heard LLS and Good Day funds are open

My husband has MM ( going on 9 years) It has been attributed to Agent Orange. We would like to hear how many others have this diagnosis.

"I'll never forget the day I received my diagnosis - it was as if my whole world came crashing down. I was 45, healthy, and active, with no family history of cancer. But there it was: Multiple Myeloma. "At first, I felt overwhelmed by the sheer amount of information and treatment options. But I was determined to fight. I started with chemotherapy and stem cell transplantation. The journey was grueling, with countless hospital visits, painful procedures, and debilitating side effects. "Despite the challenges, I remained optimistic, focusing on the little victories along the way. I learned to appreciate the beauty of life's simple moments - a stunning sunset, a warm cup of coffee, or a good book. "Throughout my treatment, I was fortunate to have an incredible support system. My family and friends stood by me, offering love, encouragement, and practical help. My medical team was also exceptional, providing expert care and guidance every step of the way. "It's been five years since my diagnosis, and I'm thrilled to say that I'm in remission. While multiple myeloma will always be a part of my life, I refuse to let it define me. Instead, I've chosen to use my experience to help others, raising awareness and supporting research for this rare and complex disease. "My journey with multiple myeloma has taught me the value of resilience, gratitude, and hope. I've learned to cherish every moment, to appreciate the beauty of life, and to never give up, no matter what challenges come my way."

MRD testing one year post SCT shows m-spike holding steady at .04. Light chains all normal. Have been on maintenance of 5 mg Rev and Dara injection once a month after SCT. Doc thinking of switching Rev to Pomalyst to try to obliterate m-spike. Not sure about this since still considered in VGPR and with standard risk . Thoughts anyone please?

Happy New Year all I hope this will be encouragement to someone. I was diagnosed in 2017 fall. Started treatment January of 2015 women to a remission in 2018. Saw my oncologist yesterday and I'm still showing no signs of myeloma after stem cell transplant.

Hi Myeloma Warriors - Tim here a 14 year myeloma survivor. I have been through a myriad of therapies. One of my longest lasting therapies was Balatamab (Blenrep). I was on Blenrep for 3 1/2 years until my ophthalmologist didn’t approve me to continue, that was March 2024. I have been on no treatment since then, basically waiting for my bloodwork to show active myeloma. In November I started having numbness in my lower back, an MRI identified this as a plasmacytoma in my sacral. I had five days of radiation and began to prepare for CarT. Between November and now another plasmacytoma appeared on my skull, causing headaches and spots have developed on my gallbladder (found on a CT scan last week, had MRI yesterday to further analyze). I start t-cell depletion tomorrow and will receive my T-Cells back next week. I have a few questions: 1. Anyone have success with CarT after being on Blenrep. Now I didn’t fail Blenrep, Blenrep was stopped because of eye impacts. 2. Anyone have success with CarT and plasmacytoma’s and/or extramulldury disease? Thanks, Tim

New drug approved in US for people who aren't good candidates for SCT! https://www.cancer.gov/news-events/cancer-currents-blog/2025/fda-daratumumab-isatuximab-newly-diagnosed-myeloma?cid=eb_govdel And this article ends with, “This is a golden age of treatments for patients with myeloma,” wrote Dr. Stadtmauer. He concluded that most patients with newly diagnosed disease can expect rapid and lasting responses to therapies with tolerable side effects."

HI, I had SCT in May. I have IGG Kappa. My light chains are staying within range but Kappas are close to the top of the range and fluctuate a lot. The Kappa/lambda ratio is usually 0.80-.90 but lately Lambda is lower than Kappa and ratio is around 1.10. Is that normal? Is it ok for Kappa's to be close to top of the range? It makes me concerned when it reaches near the top of the range.

Hi, for those who have gone through CAR-T, have you had any bridging therapy before that to bring myeloma under control? Could you please share what treatment you were on as part of the bridging therapy? I have relapsed/became refractory to all the other off the shelf treatments and now my doc is recommending DCEP which I do not want to proceed with and trying to see if there are still other alternatives. Thank you

Dear Myeloma Community, Great day, I am 70 years old, diagnosed with Myeloma since almost two years. I am now on Lenalidomide 10mg maintenance dose. I am monitoring the Kappa Light Chains, being my type of disease, as an important marker for progression. I have no m-spike. The outcomes are different from Lab to Lab. Such as I got 129 from one lab and 89 from the other with 1 day difference between giving the blood samples. My question: did anybody come across the question of the accuracy/ tolerance of this test? Is it plus or minus 5%, 10% or? I am not able to judge or find an answer. My doctor says I don't need further tests like a Biopsy or PET, but we need to monitor my condition monthly. Please let me know if you have a similar situation or can help somehow with an advice. Rgds to all

Hello everyone, My fiance has been getting the chemo injections in his stomach and they are very painful. I was wondering if there was anything that helps relieve the pain?

Dear all happy new year!! My name is Marzia and I’ m italian Myeloma patient from 27 years, now I’m 46 years old. II’ve started talquetamab, just twice infusion but already I have a lot of side effedt: my hand and face Skin is all peel off and I totally loose taste, Can you give me some suggestion to contain this side effect? Thanks you all Marzia

Hello Everyone, January 1st was the start of the $2000.00 max out of pocket for prescriptions that are covered as formulary in your Part D drug plan...

Hi all First of all, Happy New Year to everyone in the community! Thank you for the much-needed support and positivity here—it's been truly amazing. I hope 2025 brings great things to all of us. I have a query: Even when multiple myeloma (MM) is stable with a low SPEP, can bone pain still be an issue? Should this be considered normal, and is taking paracetamol advisable in such cases? What are the other solutions?