I was diagnosed with Smoldering Multiple Myreloma 9/2024. My labs have been stable for the last 2yrs without any consistent climb in numbers. This past Friday, I began to notice right hip pain, most when first standing but it subsided later in the day. Saturday & today, the pain has been more noticeable & more frequent; again when first standing or after standing for a while. Has anyone experienced such a case or anything like this?

Hi. I am a 21 year survivor. Would love to chat with others who have this disease.

I’m hoping to connect with others who have IgA lambda multiple myeloma with the t(11;14) translocation, or anyone with t(11;14). My mom has IgA lambda with t(11;14), and I believe she may be approaching progression, so I’m trying to learn as much as possible to help my family make the best decisions regarding which treatments to pursue and in what order. As many of you probably know, t(11;14) is a somewhat unique subtype of myeloma and is classified as standard-risk. However, after doing a significant amount of research and speaking with other patients on different platforms, I’ve heard very mixed experiences with the traditional frontline approach D-VRd followed by transplant. Some people with t(11;14) have told me that treatments such as CAR-T or venetoclax-based therapy ultimately gave them their deepest response or longest remission. I would especially love to hear from anyone here with t(11;14) who has already gone through treatment. Which treatment worked best for you and how long did your remission last? I understand that everyone’s disease and treatment response can be different, but hearing real experiences from people with the same translocation and subtype would mean a lot to me and my family.

About a year after CAR-T, I developed Cutaneous T-cell lymphoma on my leg. It contained CAR+ genetics resulting from CAR-T. It was resolved with Brentuximab and localized radiation. Just as it was resolved, MM reappeared. On Talvey for that. Then a lump on the pad of my thumb was biopsied as CAR+ CTCL. Anyone seen anything like this?

I’ll be staring Isa-K/d soon. Seeing doctor tomorrow. Any advice on what to ask doctor and what are the preparations, what side effects to expect.

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