I’m early stage MF with high platelets… I have a lot of symptoms due to the high platelets, but also the MF. I’m so tired of trying explain the fatigue, let alone all the other symptoms… my head feels heavy (or full) ALL the time. I have ringing in the ears, I feel things crawling on me that aren’t there, I have palpitations from the anemia, I will get anxious half way through the day just because I am trying to get stuff done and my body is getting worn out and I have to stop! I still work full time and I work night shift (I’m a police dispatcher/911 operator). I feel so alone in this and don’t know how to deal with it anymore. I haven’t even listen all my symptoms… I am not on meds except baby aspirin right now or as everything I tried made me feel so much worse. Sorry, just need a safe place to vent!

I can never find our meeting on the website

I am enrolled in the Sim0500 trial which is a Trispecific targeting GPRC5D–BCMA–CD3 . It has been giving unbelievable results. My myeloma numbers were normal within 8 days of getting my first injection . It has not been without trials. The skin side effects as well as the taste changes are typical of GPRC5D agents. To me this is a miracle as my myeloma was very aggressive after relapsing in 9 months after my Car-T. I move on now to my six months of treatment. The side effects have lessened but are still there but tolerable. My labs are still good. My PET scan has shown a dramatic decrease in the myeloma lesions but they are still there. I will get my bone marrow biopsy next month. I am hopeful.