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.

I hope everyone had a good 4th of July. Has anyone tried a grounding mat to help with neuropathy? Thank you for any input. Mske it a great day!’

Hi I will be starting a new treatment soon called Isa KD Isatuximab Carfilzomib and Dexamethasone. I am out of remission from my Stem Cell transplant after only 2 1/2 years, so I’ve been classed as high risk. I’m feeling very down about this treatment as it’s an every week transfusion for a while then every week for 3 weeks with a week off. I live in Canada so treatments may be different here, has anyone had this treatment? And what was your experience. I would be grateful for any information. Thank you

Has anyone heard anything about the measles vacinne post ASCT?

I leave the hospital tomorrow after my ASCT. Thank the Lord I did not have any fever, only threw up a few times, and only a few bouts of diarriah. The hospital I am at (In Israel) seems Very conservative in what I need to watch out for when I go home. Questions: 1. (I know I am bringing up a hornets nest...) Do masks work? Should I plan on wearing one even if there are only 1 or 2 people around? And for how long? 2. How careful do I need to be with the sun? They say I should not be out in the sun at all for a year because of the Chemo and chance for secondary cancer. That seems crazy! 3. They say not to go out to eat because you don't know who or how the food was prepared. 4. How careful in general do I need to be regarding being around other people? I was immune compromised before my Stem Cell transplant...I was not so careful then and had no problems... How long do I need to be careful??