Blood Cancers & Disorders Support Group

I have many symptoms of amyloidosis. I had a PyP scan an of heart. Result was equivical- meaning not not neg, but not pos either....

CAEL 101 seems to be the only effective treatment for reduction of amyloid fibrils of the heart in Al Amyloidosis. I’m reading conflicting information about...

I have shortness of breath, neuropathy, enlarged tongue, carpal tunnel syndrome, bruising under eyes. Negative fat pad biopsy

Just diagnosed with wild type ATTR at 67. I have been prescribed Attruby . My only symptom is tingling in my fingers so I’m hoping...

Hello. I know this is a shot in the dark, but that’s where I am. I am 57 and was diagnosed with Waldenstrom’s Aug 2021,...

Diagnosed with AL amyloidosis through blood tests- 77 years old - is a kidney biopsy necessary? I chose not to do it but am re-thinking....

I am an 83 year old female and will be starting treatment of dexamethasone and Daratumumba along with Benadryl and Tylenol I am wondering about...

Does anyone have AL Amyloidosis? If so could you share what treatment you were on and the outcome? I have MGUS, my kidney numbers dropped...

HOCM diagnosis in May 2023. Was put on Camzyos for 6 mos. My symptoms continued to get worse: weight loss, dizziness, light headed, passing out,...

I have recently been diagnosed with multiple myeloma/ amyloidosis. Just wondering if anyone has this and would love to know more about what others are...