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.

Does anyone know of a study regarding the likely outcomes of delayed ASCT versus ASCT straight after induction therapy? My concern is the long period of unwellness that seems to afflict most patients that undergo the stem cell procedure. Some (not many) report that the melphalan treatment didn't cause them much trouble, but the average person seems to report feeling really unwell for three months and still not completely well for one year. That coupled with relapses in as little as two months and frequently within two years makes me question the value of writing off a year of life, particularly if it can be put off and have good quality of life in the mean time. I retired in the beginning of 2025 and we have not been able to do much because of Friday blood draw/Monday treatment schedule. It sure would be nice to have a break instead of diving right into ill health again, but I want to do what is best for my wife. Thanks!

Started Talvey around April 25 Since then, no ambition or desire to do anything but sleep . No answers from any of my doctors. It’s a daily struggle.

Uncertainties in regards to treatments when this sneaky monster pops back up cause so much anxiety. And the dynamics between the caregiver and the person who has the meyloma are so emotional. Ugh.

Hi, I have eye issues too! I am so affarid to get it done! I am not on Medcine yet, it's kind of odd,, they find MM in bone marrow but it sits ! This is since 2016, yes I pray a lot and I believe God protects me, but will it just go away by itself?? The pain I go through kills me, and the bowels are horrible, do you have issue with bowels? Everything I eat just comes out and yet I can't eat!!! I go for my check up on Friday, I will ask him again. Be