Hello to all. I started on Kyprolis 35 mg & Dexamethosone 8 mg 2 weeks ago. It has only been 6 months since my previous treatment. I told my oncologist that I felt I am getting deminishing results from the chemo. He agreed. He explained to me that they have tried to keep my side effects low because of my ADEM. Now I am thinking I should go to a MM specialist for another opinion. So far, I have been lucky as far as not getting nausea or anything like that. Only had that with the SCT chemo.
He said he could send me back to Denver for another SCT but I said that will not do that. So I am investigating which one to go see. I will finish this treatment which will probably go 3-4 months. Have any of you done this? I am 5 yrs post diagnosis.
Looking forward to some feedback!

Hi KK, please tell me what ADEM is… Sorry you are having problems after doing well for 5 years. I had my stem cell transplant in 2009 at Moffitt Cancer Center in Tampa, FL. I am still in remission, May will be 6 years. If I were you I think I would go to a specialist. Please let me know if I can help you in any way. Thinking of you. …

Hi zeepee,
I am a little complicated. ADEM is short for Acute Disseminated EncepheloMyelitis. I had a ear infection that I took antibiotics for. Then the ADEM hit. My autoimmune system attacked my brain. It went after the white sheath around the grey matter. I was in the hospital for 8 days on IV steroids. My neurologist told me at my follow-up that my M spike was elevated on a blood test done in the hospital. He drew blood and had it checked again. The next day, he called to refer me to an oncologist, my current MD.
I have not exactly been doing all good for these 5 years. I had chemo, then the SCT. I did good then for 2 years and 1 month. Then my number started up again. I had chemo again that kept me down for 1 year. Now it has only been 6 months since 8 finished my last treatment.
Thanks for your concern.