Hello, since undergoing an autologous stem cell transplant in September 2024, I have been experiencing pain in my left middle finger (the pain is coming from the joint at the base of my middle finger). Also, I have been experiencing numbness and tingling in the outer part of my right thigh when I lay on my back or sometimes sit in a reclining position. Has anyone experienced any of these symptoms after an autologous stem cell transplant? If so, did you take steps to find out what was causing them, and how did you treat them, and was the treatment successful? Thank you.

My fiancé is 41, diagnosed with multiple myeloma 70% August 2nd and his numbers are getting higher. I’m really just so confused because he has no symptoms and feels great. I’m just having a really hard time. I don’t know where to put my focus and I feel that I’ve just been distracting myself. I feel like I am wasting time. When he was diagnosed the dr told him with no treatment he would have about 4-6 months left to live. Our wedding is in about 6 months and I can’t focus on any planning because I feel like I need to be doing something more important to help him live. I’m just stuck in this state of fear and feel so helpless. I feel like I’m in a terrible nightmare and can’t wake up. He also wants to cure this as naturally as possible but is considering trying one round of treatment. Any suggestions or helpful words or wisdom would be greatly appreciated. Thank you

I am looking to get some information from others on ZOMETA . Did anyone get this monthly, did you have side effects , is it necessary the MM Patients get this treatment ? Thanks Linda

After a good stem cell collection (4.7m in 2 days), I get chemo this Tuesday and my cells back this Thursday. Any last minute tips or advice?

Hi I was diagnosed with high risk IgA Lambda MGUs two and half years ago after a bone marrow biopsy. I have been on 3 monthly testing ever since and I find myself anxious each time the testing comes round. I was told I could expect a 2 year progression, I assume because of abnormal FLC ratio. I am in UK and it is hard to get information from anyone as to what they expect to happen. GP’s ignore you and haematology nurses are too busy and forget to even keep up with appointments. Glad to join a group just to feel less like your on your own!

For foot neuropathy I use infrared lightntherapy and electronic signal treatment thru Dr. Anderson in Denver, CO. Have seen significant difference. Linda Huerta

Hi I am switching my current treatment to pomalyst/darzalex, soon, but as we all know treatments only last for as long as they want to. When that happens, my next treatment of choice will be a CAR T or bispecific antibodies. My question to any of you is has anyone had a bispecific antibodies first and then the CAR T? What was your outcome if so? Thank you!

Diagnosed IGA Kappa smoldering in 2016, active in 2017. Had Rd induction and AST in 2018. MRD negative post transplant. On Revlimid maintenance for five years until relapsed a year ago. Switched to DKd in December 2023. Achieved very deep response - within five weeks, M protein disappeared and Kappa light chains dropped from 500 mg/L to about 6 mg/L (normal range is 3.3 - 19.4) and have stayed at this level since then. I have two myeloma oncologists. One is suggesting we drop the Kyprolis/Dex and just stay on Dara maintenance. Kd does have side effects - no sleep the night of the infusion and possible damage to heart. The other oncologist, who works for a well known myeloma research clinic, is reluctant to do that because no clinical trial has been conducted to determine if PFS would be adversely impacted by dropping the Kd. Question - after achieving a deep response on DKd, or any combination for that matter, has anyone gone on just Dara maintenance and if so, how long have you stayed in remission.

Stem cell transplant eligible but declined it and went straight to maintenance. I am looking for feedback from those who are stem cell transplant eligible but skipped it.Did they take 3 drug regimen or 4 drug regimen for induction? What made them skip stem cell transplant? Did they achieve MRD negativity or not? How are they doing? How long did their first remission last?thank you.

I had AST in September, and I will be starting Lenalidomide as maintenance treatment. I read somewhere that it sometimes causes diarrhea. How true is this? Is there anyone who is using this medication and has experienced the diarrhea.

Hi All, I read that radiation exposure can increase the chances of getting Multiple Myeloma. I served in the Navy on a nuclear submarine tender where radiation exposure was always a possibility. Anyone out there in Health Tree who also served in the military where radiation exposure may also have increased the possibility for now having Myeloma? Peace, Brian