I have very much pain in my entire body. I no longer take any meds right now for multiple myeloma doctor said not on remission however all my numbers are good and normal do I still have this cancer but don't need to take it until my numbers back up. I feel real lucky . What I'm saying is even though normal but still have the bad pain. For now I doing ok. I'll keep you posted. I'm also sending prayers Take care and my God bless

I was diagnosed with stage 3 myeloma in 1992; had 4 SCTs, 6 clinical trials and wrote a book that the LLS reviewed and put in its recommended reading list. We virtually share our lessons learned and strategies with support & other groups. The longest CAR-T myeloma remission I am aware of is 3.5 years. Is anyone aware of a longer myeloma CAR-T remission?

Anyone here received Xpovio based treatment? How did it work? Side effects?

Neuropathy - Feet Since my initial rounds of Kyprolis the front third of both feet have very minimal feeling. As a result I watch my foot care very closely but that did not prevent nail fungus as a result of a lowered immune system (Treating with laser treatment and all is well). Thinking I was watching my feet closely I stepped out of the shower with light color blood emanating from my left foot. Turns out I had developed a big ole blister between the foot pad and base of toes. With no feeling in that area the blister top had opened and torn off leaving a single layer of very red skin. Anyone else have similar foot issues?

I'm Sarah NON- secretory Myeloma with 8 rib fractures and spine compressions - 52 Mum of 3 just adult kids in Melbourne Australia. Diagnosed Nov 23. Completed 4 cycles of VRD. Stem cell transplant schedules 15th May. Thanks for letting me join the group!

So thankful to find this group! 52 year old mother of three grown children (2 in college), wife, and RN in a very busy short-stay ambulatory clinic. I was diagnosed with Kappa IGg MM 12/22 and started induction therapy of VRD in 1/23. Doing pretty well with this for the most part. Looking at SCT in Sept or October, we think, at this time. I have not needed to miss work for my Velcade treatments other than leaving a little early once a week but am curious about transplant recovery. I understand it can take a few months. My job is quite physical, and I stand all day so am concerned about being able to physically perform as needed. For those that have had the SCT, how long did it take to get back to “normal”, or close to it?

I remember when I was diagnosed the doctors were so shocked that I was only 42. I felt so alone because everyone I met with the same disease was so much older. Thank you for creating this group.

How do I find a specialist in AZ-I typed this in your search bar at top-nothing came up?