Blood Cancers & Disorders Support Group

Hi everyone, Can you please tell me how to manage macular amyloidosis.. The pigmentation is increasing slowly and i am super stressed out.. Please help

I have recently been diagnosed with Amyloidosis, although I don’t know yet what type I have. They sent my biopsy sample to the Mayo Clinic...

Diagnosed with the Waldenstroms a year ago, just today with amyloidosis. Will start treatment next week. Anyone have these or know anything?

I was diagnosed 3 years ago with AL Amyloidosis, along with Factor X deficiency. I was told the Factor X deficiency was very, very rare...

Hello. I need help/advice...36 M For the last 6 months I am having these health issues. To be more specific, I think it all started...

61 year old Male in otherwise great health. Eat well, athletic non-smoker... very moderate drinker. Diagnosed with WM in 2017. IgM numbers too low to...

My husband was diagnosed with smothering myeloma and Al amoloyd in his heart. He served 20 years in the military and now this

My mom was recently diagnosed w AL Amyloidosis, our local hospital missed some important tests . We just had our first trip to Mayo. I...

Recent carpal tunnel release found amyloidosis but insufficient tissue for biopsy. I live near Des Moines and she wants to send me to a cardiologist....

I was diagnosed with myeloma quite by chance at a routine neuro appointment a year ago. My current diagnosis is Amyloidosis and multiple myeloma I...

Diagnosed 3 years ago with Al Amyloidosis. On faspro and dex. Numbers were stalled for a year but suddenly are climbing. I feel like I'm...

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

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....

My best friend was recently diagnosed with Amyloidosis and would like to get a second opinion. What kind of specialist should she look for?

Hello. My dad was recently diagnosed with AL Amyloidosis. We live in northcentral WI and he is ready to take a step up in the...

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

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...

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,...

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....

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,...