Ok, I know this is the big elephant in the room, but I have researched and googled everything I can find. What is the prognosis? I have to say looking at the blog sites and the survival stories isn’t heartening - a lot of them aren’t updated - bad sign to me, although I guess you can get tired of posting too. Anyway, I know so much depends on organ involvement, results from treatment, etc. But this is incurable - what are we looking at anyway for AL amyloisysis? Assuming treatment? Is this a 4 year thing? A 10 year thing? I can’t find a real answer - I understand every case is different but how much does it REALLY decrease a normal life span for a 56 year old male??
I am not sure this is a question worth pursuing, not because it isn't an important one, but because variability makes statistics meaningless in a case like this. Kind of like taking a room full of professional basketball players and children, and determining that the average height in the room is 5'5".
What is your husband's situation, Maggie? What treatment is he trying, and what type of organ involvement does he have?
True Dancermom everyone is different. I have only been in treatment for a year and will get tested once a year from here out. I didn't have organ problems. My dr does have a lady who has been clear for 15 years. I guess it's where you are are when they catch it and your treatment. I am just taking one day at a time and thanking God they found it early! Take care!
I had the very unfortunate experience of being handed a pamphlet when the doctor who was filling in for my vacationing doctor told me I had amyloidosis. He said "Sorry" and walked out. I of course had never heard of the disease and upon reading this photo copied information, thought I had only 1 or 2 years left on Earth. That was 2005. Thankfully, the radiology doctor who had done my kidney biopsy called me at home that night and reassured me that there was more hope than that pamphlet said, and steered me to the most knowledgeable hematologist in our area. I still occasionally search the internet for prognosis information, and it usually is not cheerful info, but I know more and more people are surviving longer as more physicians become more aware of the disease. My hematologist tells me that although I am in remission, I still HAVE amyloidosis, and there is still no cure. But I am here to testify that I am now living a very nice life. It will be 10 years in March since the official diagnosis, with cardiac symptoms two years prior to that, so really 12 years.