I must say I was completely shocked when I heard of the end of the trial for NEO. Others I have talked to (people definitely more knowledgeable than I in the field of amyloids) had a feeling it was coming. I was convinced that this antibody was going to do wonders for the field of AL Amyloidosis. I was convinced that it was doing wonders for me! (I feel like maybe it did still help me even if they didn’t…
When I first heard that I was going to have chemotherapy I pictured one drug, one very strong drug that was used to treat cancer. I envisioned myself bald and extremely sick with side effects. I was quick to learn that this was not the case for me. As I have come to understand it, chemotherapy is a broad term used to describe a variety of treatments and generally involves a combination of medications. (I’m certainly no doctor and a…
I have AL amyloidosis with multiple organ involvement. Plasma cells in my bone marrow over produce light chain proteins which misfold to form amyloid light chains. These misfolded proteins have built up in my heart, liver, and kidneys, causing them to slowly fail. AL Amyloidosis is a rare and life threatening blood disorder for which there is no cure.