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

Hi, My partner will be undergoing the autologous stem cell transplant and I wondered if there are some caregivers out here to connect with. It’s all coming so fast and I would like to know what it’s been like caregiving and keeping everything safe. Thanks

Hi! Has anyone experienced inflammation of the trigeminal nerve post ASTC. Possibly a side effect from starting vaccines…

Hi. I. am 82 and was diagnosed MM in Feb 2025. I have since completed 8 infusions of Darzalex, Dexamethasone and Difenhydramine and took oral Revlimid 10mg 21/7. My doctor also initially put me on Acyclovir twice daily. Now, after the initial 8 treatments, my infusions have been set for a month apart ...same meds. My question: has anyone else had to continue taking the Acyclovir BID during the non-treatment days/weeks? My doctor postponed our last meeting, so I hope to see him on 7/10 to ask this and other newbie questions.

I was offered ABBV 383 treatment after the second relapse . Can anyone share their experience ? What do I need to be aware of ? Thanks

Has anyone post stem cell transplant been diagnosed with inflammation of the trigeminal nerve? Possibly a side effect from vaccines or chemo.

I am 36 years old and recently diagnosed with MM with AL Amyloidosis in March 2025 after experiencing swelling in my body and a bony lesion forming above my right eye. I started chemo (Darzalex Faspro + Cyclophosphamide + Velcade) in May 2025 and I receive it on a weekly basis. I’ve been told many times that I am not the typical demographic for this type of cancer and even more atypical because of the amyloidosis tacked on. I will likely have an ASCT at the end of this chemo regimen at the end of the year. Are there others who were diagnosed at a younger age and/or with amyloidosis? What has helped you throughout your journey, personally and work-wise? Mine is just getting started and I’m experiencing all kinds of highs and lows…while also maintaining a full-time career as a CPA.