Prepping for ASCT in July. Looking to connect with anyone who has gone through it recently. What to expect? what to bring? I’ll be at RUMC

HealthTree Connect community events… For those who’ve gone to one before, are they for those with just MM (& their family/friends/etc)? Or is it open to the precursors also? Thanks

Where do I find list of specialists in my area?

My husband has high risk MM. He has his SCT last May, but after 10 months relapsed. He was heading to CarT treatment, but the day the cells were supposed to be returned to the clinic, we learned that the T cell modification had failed. His cells were slow growing, did not respond well to the growth factor treatment, and failed transduction with the virus. He’s currently on Xpovia, dexamethazone, and carphilsamide. However, the side effects have been hard to deal with. I’m wondering if anyone has had a similar reaction. Can he move to bispecifics relatively soon, or does he have to wait for the current treatment to fall? Because as far as he’s concerned, it’s not worth doing as it stands.

A friend shared this article with me. It is a wonderful story. today.https://www.bbc.com/news/articles/ckg4kj2nxjgo

What financial concerns do you have? Are you stressed over possible changes to healthcare coverage?

Help Us Bring Hope to Andrés Bracho — A True Survivor Fighting Myeloma in Ecuador My name is Andrés Paredes, and I want to share the story of my father-in-law, Andrés Bracho — a resilient and honorable man, currently fighting multiple myeloma in Ecuador, where access to advanced treatment is practically unavailable. Andrés has already endured a malignant plasmacytoma, which was surgically removed. He now lives with a second inoperable tumor on the opposite side of his back, which, if removed, would likely leave him unable to move. Despite the pain and complexity, he remains on his feet — a testament to his strength and will to live. But his fight is even greater: Andrés is a heart attack survivor with a history of hypertension, only one functional artery, and multiple pre-existing conditions, including chronic pain and prostate issues. And yet, despite it all, he walks every day with dignity, refusing to give up. His current treatment is limited to what the public system can offer: cyclophosphamide, dexamethasone, and bortezomib, with tramadol, gabapentin, and acetaminophen to manage the pain. Advanced treatments like lenalidomide, carfilzomib, or stem cell transplants are simply not available or are priced far beyond what a regular Ecuadorian family could ever afford. We are reaching out to HealthTree Foundation because we believe Andrés deserves a chance. We need guidance, medical orientation, and any possibility of international support or care pathways. He’s not yet a grandfather — but he dreams of becoming one. And he has earned every opportunity to keep dreaming. Please help us bring light to a story that still deserves a hopeful future. With gratitude, Andrés Paredes & Family

Hi I had my SCT in September last year and doing okay on the Revlimid. I was wandering what supplements most people are taking after their treatment. Thank you!

Has anyone been treated by a neuropathy specialist for peripheral neuropathy? If yes, has it been effective?

Hello! I was diagnosed Dec 2024. I am 46 years old. I am on month 5 of treatment. I am high risk. My numbers had been going down pretty steady except for 1 month in the beginning when they kept stopping my treatment due to my low neutrophils. But since that is under control I have been consistently getting treatment. Just today my M protein came back higher. 6 weeks ago it was at .3 and today it was .4. I haven’t talked to my doctor yet it usually takes her some time to review and contact me. Doctor reduced my steroid last month from 40mg once a week to 20mg once a week. It was not letting me sleep. Could this be the cause of the increase? Is this a sign medication is no longer working?

Has anyone in this group after CAR-T started with a runny nose and watery eyes that have lasted for months? Went to a ENT and he prescribed Ipratropium bromide nasal spray and it helps slightly. It’s not allergies because I take Zyrtec daily. It started shortly after I received my Tcells back. Oncologist and Mm specialist has no ideas. Bone marrow showed moderate lympopenia (wrong spelling) and maybe this is part of it? Anyone experiencing this strange side effect? I also had Talvey for bridging which caused my taste to disappear for months but it has returned thankfully.

Remission! What a glorious word. Living beyond remission requires the mental fortitude to leave your cancer behind and forge ahead and live life. Being on zero treatment puts me in a fabulous mood daily. No nagging side effects , no infusions, no pills to remember and just a feeling of normalcy. I eat sensibly and do yoga and swim and exercise my brain by reading novels and playing guitar. I pray nightly that I remain MRD- and I am thankful for my family and all my blessings . I still must go for labs and keep track of all markers;however, I must admit , stepping foot into the oncologists office reminds of what I have been through and where I am today. I feel empowered and thank my body for getting me to the point I am at today , as I glance at all the patents around me wishing the same results for them