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.

Has anyone in the group who is IgG Kappa with a 1q gain who has had a ASCT opted to take a break from maintenance meds? The ASCT was in Dec of 2023. Then Darzelex for 18 months. Thanks for any feedback.

Day 14 Carvikti. Was treated on Day 7 with tocilizumab for CRS. I'm workng on overcoming weak appetite and eating issues by using high protein drinks and soups, along with yogurt and milkshakes. I'm looking forward to labs tomorrow to learn how my whites and reds are doing. Basically, I think my Carvikti is fairly typical so far.