I have been on Revlimid and Dex now for 3 years and my paraprotein is keeping down, but wanted to ask if anyone has experienced balance issues. I also experience significant pain in my back,worse on the days I don't take Dex. I try and walk each day and am doing exercises from my physio.

Hey everyone, curious how much dex and how long you all are tolerating it. I was on 24 mg spread out over 3 days an dit was way too much. Now just taking 4 mg week, can still feel it but so much better

Hi Everyone, I pray you are all coming along well. My post is regarding my allergic reaction that I experienced this past week. I started on my maintenance regiment on Wednesday, which consists of Dexamethasone, Lenalidomide and Faspro. Two hours after my treatment, I started itching, broke out in hives, shortness of breath, nose and throat began to close. Rushed to the ER, where they administered an antihistamine, Benadryl and another medication, can't remember. Symptoms subsided, thank God and I was able to return home. Question: Has anyone ever experienced this situation when starting their maintenance treatment. What could it have been? I had taken these medications prior to the transplant with no reaction. Could it have been my new immune system? I don't know and neither does my doctor seem to know. Any help would be appreciated.

Hi everyone. Wondering if anyone in this group is in the PCrowd study and is a HealthTree Cure Hub user. We are trying to help Dr. Ghobrial on something. If so, please DM me. Thanks!

Hello. My husband is 1 year post ASCT and is doing well on Revlimid alone. (standard risk, lambda light chain disease). In the last month or so, he's been having very significant pain in his arms and neck. Of course musculoskeletal pain is listed among the many, many possible side effects of Revlimid, but I am wondering if others have experienced this. His blood markers look good and he has no other side effects from the Revlimid, so he'd like to continue on it if possible. He's doing the usual things one can do for pain. Thank you!

Hi, I hope everyone is doing well. I am writing this email inquiring about solutions for my mother, who is a MM patient. She has relapsed and is currently on a Dara KPD regimen. Her lesion has a soft tissue component that is pinching a nerve on the L5 vertebra and causing sciatica-type nerve pain in her right leg. She also feels numbness at the bottom of her right foot. The pain is very intense, and even painkillers are not helping. She is on weekly dex and that helps, but only for about a day. Please do help us with any information or suggestions that could help. She is unable to sit or walk and is in excruciating pain. Thank you for your time. Regards Rukmini Roy

Hi there, I would like to get in touch with a MM "Colleague" who is also diagnosed with t(4;14) which potentially qualifies as High Risk - and who has relapsed. What is your experience with treatment after relapse? Clinical Trials, regular treatment, etc. After nearly four years of MRD negative (as guessed by my physician; "guessed" because MRD is not allowed in Holland/Europe), I relapsed sometime in December 2022. At the moment, I am in a wait-and-see stage. My physician managed to make his/our hospital eligible for a clinical trial - MonumenTAL - a bispecific - from Janssen & Janssen. Although the M-Protien was low (3.7) at the last blood test, I feel that my body is slowly giving in to the pressure. I increasingly suffer from bone pain, especially in my hip. Anyway, hope somebody will share his or her experience. And maybe we can go through this ordeal together.

Wondering; to anyone on Medicare/Medicaid. Is it possible to have a Multiple Myeloma "Specialist", to work with the oncologist/haematologist? Will Medicare/Medicaid cover the cost? I have asked this a couple of times before this and I've yet to get an answer.