I'm 48 years old & was diagnosed in January w/ Lambda light chain myeloma. I also have +1q chromosomal abnormality. I'm currently on the Quad treatment therapy & waiting for my next bone marrow biopsy to be scheduled to find out my progress. I'm struggling with do I have the stem cell transplant now? Or should I wait until it comes back (if I'm found to be in remission of course). It's such a hard decision. I also need a hip replacement. If I don't need the sct right away I think surgery for my hip would be next. Infection is such a huge worry now though due to MM. I would love any and all thoughts!

Anyone here with deleted 17p/TP53 doing Well without SCT?

I recently returned from a retreat for men with cancer put on by Reel Recovery. It's a two day activity of fly fishing at top-flight facilities, relaxation, and camaraderie. Fly fishing skills or experience not required and they provide the gear if you don't have any. They also have a 1-1 ratio of fishing buddies to attendees (many of the buddies have also dealt with cancer themselves or with family members). There are sessions scheduled all around the US, UK, and Australia. I cannot recommend it enough for any men here or that you know who've joined the Big C Club. I put my name in to be a volunteer fishing buddy for other attendees. This has been going on for over a decade and ours was the first time that they had more than one MM patient (there were three of us) at an event. We had plenty of time on the water, good food, great roundtable discussions with a licensed counselor, and great scotch and bench fishing in the evenings. Here's the link. Please spread the word. www.reelrecovery.org

Hi everyone! I am now in the maintenance stage of my myeloma journey. The maintenance includes Velcade (bortezomib) injection every two weeks + revlamid daily. I’ve been noticing hyperpigmentation on my palms and face. My complexion has literally changed on my face. wondering if anyone else has experienced significant hyperpigmentation and how you treated it.

m-protein question: would you expect the m-protein level to be zero after ASCT?

$4000 co-pay grant available for Medicare patients: https://www.healthwellfoundation.org/fund/multiple-myeloma-medicare-access/

I very strongly believe I have a myeloma/blood cancer. My doctor dismisses my concerns or argues with me. Everything is fibromyalgia to him - I know this is not. I’ve asked him to send me for a PET scan and he’s told me he would be the laughing stock of his colleagues if he sent me for one. He has also ‘educated’ me on 2 occasions that he has ‘been doing this’ (practicing family medicine) for 20 years and would know cancer if he saw it. In the interim, my left leg hurts every single night for the last 18 months, my spine and now my hip/buttocks. I suffer from daily headaches for the last year in the frontal area of my forehead bone. This is my second doctor. I feel that I am not believed. I am judged by how I appear on the outside - not what I am on the inside. My bloodwork usually comes back fairly normal (not entirely). I’m too young to die. I have a daughter who depends on me and an elderly dad with Stage 4 cancer. I desperately need an oncologist to examine me or a bone biopsy or a PET scan… I’m tired of being in pain, and tired of the fear of what is happening to my body while I sit on the sidelines and just wait. I pray that I finally will be listened to. This isn’t right. Not in this day and age. Is there a doctor out there who can help me, please? Samantha, Toronto, Canada

I live in Palm Coast FL. Looking for a SMM specialist near me. Any recommendations? Thank you.

CPR funds are now open for Multiple Myeloma. Look into this to see if you qualify for up to $7,500. The link is: https://copays.org/funds/.

Hi all I am looking for a good doctor who treats multiple myeloma in New Orleans LA. Can anyone refer me to someone?

Wondering how many people experienced diarrhoea when on lenalidamide… ie revlimid?? Not looking forward to this side effect

I was diagnosed in October of 2024 after I ended up in the ER with a distended stomach (liver was twice the size, I do not drink alcohol)hemoglobin at 7, constipated for days, and in incredible back pain., My first unusual symptom was foam in my urine at the end of 2023. My PCP told me it would work itself out, it didn’t it actually got worse (she went on an extended leave of absence) then came the Urgenf Care visits for flus twice, Covid once, pink eye, and ultimately back pain. I saw a chiropractor for months.. no relief. Was sent to a kidney specialist he tested me for Lupus and told me to come back in October. I was borderline anemic, had lost almost 20 lbs. in six months but mostly muscle mass so it was attributed to my lack of mobility because I was in pain. Was referred for an MRI of my back, the results showed fractures on my vertebrae. I had a textbook case, the kidney doctor should’ve alerted the PCP but didn’t. I was on Darzalex Pro, Velcade and REVLIMID for 5 months (I had a bad reaction at the beginning, but after one cycle I got stronger and felt better) bloodwork showed good results so the next step was to prepare for an ASCT in March. However, the cancer in the bone marrow showed at 80% I was put on Krypolis, Darzalex and Pomalyst for three cycles it reduced to 40-50% thus I’m still not a candidate for ASCT. Next week I am scheduled for the stem cell collection and will speak with my Oncologist on the 23rd to see how we are to proceed… It looks like CART T or a new treatment that just got approved by the FDA may be a better option than the transplant for me. I used to travel frequently, hiked, danced, have season tickets for our local Pro Soccer Team, like most of you had a full life that’s been on hold. I’m a positive person, I am surrendered to this role I was assigned but I can’t wait to get back into a more normal life.

I’m recently diagnosed (May 2025) currently in my Dara-RVd induction therapy. Due to increased side effects, the doctor is stopping the Revlimid and replacing with pomalidomide. Has anybody else had this approach? I’m wondering about the short- and long-term consequences/future treatment options if Revlimid isn’t an option.