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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

AL Alyloid

A MyAmyloidosisTeam Member asked a question 💭
Santa Ana, CA

I am 53 and recently been diagnosed with AL Amyloid stage 1. I am undergoing treatment and want to know if a stem cell transplant is necessary. The treatment is brutal and I am sick most days. I don't know what my life expectancy is maybe five years.

October 18, 2023
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A MyAmyloidosisTeam Member

I would think a stem cell transplant would be the last option when drugs are showing great promise to push the amyloidosis either into remission as I am or extend the life of the patient.

November 16, 2023
A MyAmyloidosisTeam Member

The first two months of my treatment were difficult (I was also having to deal with skin cancer surgeries too). Some day during the third month of treatment I seemed to stabilize. I began having more good days and less bad days.

I finished my initial treatment plan in late August, and I’m in a maintenance phase now. I feel much better.

I do not plan on the stem cell transplant at the present time.

I do not think about my life expectancy as often as I used to. Just trying to enjoy each day.

Hang in there. I hope your treatments are effective and you feel better soon

October 28, 2023
A MyAmyloidosisTeam Member

SCT is a personal choice. I didn’t go that route. I’m on maintenance chemo and will be for the foreseeable future. I didn’t think the benefits outweighed the risk. I looked into CAR T cell therapy but I was told I wasn’t sick enough. Thank God! As for life expectancy… don’t read everything on the internet. It will make you crazy! Just know the only one who knows how much time we have is the Man upstairs! Do your treatment and enjoy life the best you can. Surround yourself with family, friends and furries 😊

October 18, 2023
A MyAmyloidosisTeam Member

She hasn’t been on here since February. Hopefully she’s getting treatment and things are going well

June 19
A MyAmyloidosisTeam Member

I would rely on the advice of your doctors and perhaps a second opinion all from top amyloid centers. I do think there is a movement towards medical therapy but you are young and want to consider all options.

June 19

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