Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
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.
A MyAmyloidosisTeam Member asked a question 💭
Bloomington, IL
December 9, 2025
 · 
Be the first to react
A MyAmyloidosisTeam Member

I get it. It is a trade off. you can die quickly and get it over with, or you can choose to live and have a life occupied with dealing with this disease. Compartmentalize. Focus on what is really important, make peace. Prioritize. Love light. It beats darkness.

December 22, 2025
A MyAmyloidosisTeam Member

End Game
It’s all about HOPE— TIME —-PAIN
IM STILL UN THE
NEVER / NEVER / NEVER
GIVE UP.
Phase in my Journey
Good Things will happen
You are not alone.

December 9, 2025
A MyAmyloidosisTeam Member

I agree and so does my family. Thanks for sharing and Merry Christmas to you and yours

December 22, 2025
A MyAmyloidosisTeam Member

Please don’t stop treatment. Try to remain positive. With treatment some people are alive 10 to 20 years later. With no treatment it’s not a good senario. You’re way too young. I know the chemo gets you down but after a while you’ll go on maintenance and it will be better. I would rather have a fighting chance especially when new drugs and treatments are in clinical trials.

December 9, 2025 (edited)
MyAmyloidosisTeam

What happens to life expectancy with systemic AL amyloidosis if treatment is stopped?

Stopping treatment for systemic AL amyloidosis can significantly impact life expectancy. Without treatment, the disease progresses more rapidly as amyloid proteins continue to build up in organs throughout your body.

The heart is often Show Full Answer

What happens to life expectancy with systemic AL amyloidosis if treatment is stopped?

Stopping treatment for systemic AL amyloidosis can significantly impact life expectancy. Without treatment, the disease progresses more rapidly as amyloid proteins continue to build up in organs throughout your body.

The heart is often the most critical factor. When cardiac involvement worsens without treatment, survival times can be much shorter. About 30 percent of people with AL amyloidosis live only a few months when they don't receive treatment early enough or when organs are already severely damaged.

Treatment is essential because it can:
- Slow or stop the production of abnormal light-chain proteins
- Reduce amyloid deposits in organs
- Help achieve remission in some cases
- Significantly extend survival time

With effective treatment started within the first six months after diagnosis, people can live for many years. Current treatments have improved survival rates dramatically - about 1 in 5 people are alive 10 years after diagnosis with proper treatment.

If you're considering stopping treatment or have concerns about your current therapy, it's crucial to discuss this with your healthcare team. They can help you understand the specific risks based on your stage of disease and organ involvement, and may be able to adjust your treatment plan if you're experiencing difficulties.

December 9, 2025

Related Questions

View All
A MyAmyloidosisTeam Member asked a question 💭
Barnegat N.J

A MyAmyloidosisTeam Member asked a question 💭
Fall River, MA

A MyAmyloidosisTeam Member asked a question 💭
Vero Beach, FL