Hi all, I’ve had MM for 7 months numbers have been dropping but not fast enough, getting referred to more specific hospital U of M. My disease was diagnosed in between my 1st and 2nd back surgery. I’ve had a total of for surgeries to fix and repair 12 compression fractures and it did help the pain but I have 1 big problem still. I can’t get my body to adjust and allow my back to relax unless I set in a chair and concentrate with focused breathing. When I attempt to walk it just automatically tightens up, and I walk around with my shoulders shrugged up. I feel if somehow I can get my body to relax my back I would feel a lot better.

My husband is 58 and has had a stem cell transplant and just recently CAR-t with Carvykti. His stem cell only lasted 4 months before the cancer came back. The side effects from Car-t have been awful. His case is complex. Has anyone else had this with side effects? He was in ICU for CRS and now dealing with bad neurotoxicity. He had the severe headaches and now has numbing in his abdomen, back, feet and hands. Has anyone else had this? He is a month past the transplant.

Anyone on Isatuximab + VRD? Please share your experiences

Relatively newly published review article: Diagnostic and Treatment Strategies for AL Amyloidosis in an Era of Therapeutic Innovation https://ascopubs.org/doi/full/10.1200/OP.22.00396#

Anyone with High Risk Multiple Myeloma on their first line of treatment who switched to Pomalyst from Revlimid during maintenance? If so could I ask why? Could not tolerate revlimid? Did not get a deep enough response from induction/consolidation? Wanted a more potent drug in maintenance in order to extend their remission? Experienced an increase during maintenance and used Pomalyst to bring numbers back down?

Anyone with High Risk Multiple Myeloma who switched to Pomalyst from Revlimid during maintenance? If so could I ask why? Could not tolerate revlimid? Did not get a deep enough response from induction/consolidation? Wanted a more potent drug in maintenance in order to extend their remission? Experienced an increase during maintenance and used Pomalyst to bring numbers back down?

Hello, glad to join the group. (Thanks Audrey!) I'm 52 now in 3rd relapse, doing well overall. Diagnosed at age 40 in 2011, stage II, 70% in marrow, standard risk. Seven cycles of VRD put me into CR. No transplant due to liver issues. Stayed in remission for 6 yrs without maintenance meds. "Watch and wait" was recommended in 2018 when M protein reappeared as it was a slow progression. In 2021, symptoms were minimal and BMB showing only 20%, but this time showing quadruple hit (high risk). Started Dar-Kypr-Dex, achieved MRD after 5 cycles. Collected cells for future use as liver issues had resolved. Stayed on this for 20 months. Then had sudden, aggressive, painful relapse in Jan 2023 - no M protein detectable but kappa FLC shot to 1400+ in one month. So now it's converted to light chain MM. Started Empliciti-Pom-Dex with immediate response and back in remission. All symptoms resolved except still having numb chin/gums/mouth. Doctors are stumped about that as scans in January were negative. Personally, I married with 4 adult kids age 19-27, 3 still at home. I work part time as a nurse. After the aggressive relapse scare in January/Feb, my main desire currently is prioritizing my own self care and spending time in important relationships. Also, I'm learning/exploring the mind-body connection in how our thought life affects our physical health, good or bad....trying to battle this on all fronts. Grateful for 12 yrs with MM so far with a fairly good life. Looking forward to learning from each other in this group =)

Hi All, I have high risk MGUS/SMM and wondering if there is any info out there related to having knee replacements? This may be a silly question but would this impact/ tax my immune system to have foreign objects as knee replacements in regards to making me progress or be more likely to progress? I have been stable for 5 years since Dx. I am trying to locate any studies related to this but not much on MGUS progression.........

Hi All, has anyone had this happen? I've been taking the Dex (steroids) for over a year, except about 2 months. Got off last year, then back on now for maybe less than, or year. And same as then stopped again about 6 weeks ago due to violent, sexual, nasty nightmares. My treatment is the Dara, still Dex once month when I see oncologist vs. the every week I was doing, and couple others meds, I forget. Ant thoughts on the Dex? Now program has to change which it does about every 5-6 months due to elevation in protein. Now he wants to add the Pomo pill. Any thoughts on effects of this pill? Responses are appreciated. Thanks. I don't know if I'll do the Pomo. I won't keep chasing or trying programs. Don't like effects of treatment. Thoughts? Thanks. Margie. God is my healer laughing!

The 2nd Annual Black Myeloma Health Virtual 5K/1m Awareness Event is a little over 3 weeks away. If you haven't registered, don't wait; sign up today and invite your friends to join you on August 12th or 13th. Since this is a virtual event, you can participate at your convenience on either day and do whatever activity suits you. You might consider riding a bike, taking a hike, going for a walk, running, swimming, using a treadmill/stationary bike, walking in the pool or the park, or even marching in place. We'd love to see pictures of how you participated in the event. Each participant will receive a Black Myeloma 5k T-Shirt and wristband. Register, create, or join a team at this link: https://give.healthtree.org/event/2023-bmh-5k-1m/e482029.

Hi, I have been on Darzalex faspro for just about 2 yrs. MY FREE KAPPA LIGHT CHAIN numbers have been creeping up and are now in beginning abnormal range. I had labs done today and am waiting on results. Doc says if numbers WAY up then she would like to keep me on DARZALEX but go back to the beginning protocol of 9 weeks of WEEKLY then 6 Weeks of BI WEEKLY then back to monthly which is what I am on now. Has anybody gone "back to the beginning" with DARZALEX??