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Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

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Replies to "Thank you. I have been educating myself daily on AL and its affect on the body..."

Thanks for sharing what you have learned through your own research. You are correct in advocating for patients to educate ourselves about our conditions. And searching the internet can be a wonderful source of information - as long as we go to reputable and respected sources, and are aware of outdated information.
I also encourage patients to take a loved one or a responsible individual withi them to appointments as an extra set of ears, and an additional voice.
Does xwife continue on dialysis? Does the AL diagnosis require any extra dialysis concerns/complications?

Hello, @bob100! My name is also Sherry, and I was also diagnosed with AL amyloidosis in 2019 after six years of symptoms and misdiagnoses.

I hope your wife is doing much better now! I haven’t read through all the more recent posts, but you sound like a wonderful team and you seem like an amazing researcher and support to her. I would love to connect with you and others if you are still interested.

I just discovered this forum yesterday. I was tried on four different chemo combinations at Dana Farber in Boston, and after eight months they finally found a combination to bring my numbers into the normal range. However, I was only in remission for 14 months before my numbers began to rise again.

A few weeks ago, I began a new BiTE immunotherapy that has only been six months, Elranatamab. (Teclistamab is a similar therapy that has been out more than a year, but this one seems safer to my Oncologist.

I would love to know if others with AL amyloidosis have had experience with immunotherapy. Thanks!