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DiscussionDiagnosed with AL Amyloidosis. What can I expect?
Blood Cancers & Disorders | Last Active: Mar 28 1:00pm | Replies (44)Comment receiving replies
Replies to "Thank you. I have been educating myself daily on AL and its affect on the body..."
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!
@bob100,
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can be a wonderful source of information - as long as we go to reputable and respected sources, and are aware of outdated information.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?