For me quality of life is greater than quantity if I can wake up every morning and think of what a privilege it is to be alive, to think, to enjoy, to love ― Marcus Aurelius, amyloidosis is a condition but doesn’t define who we are so enjoy being alive there’s lot worse conditions than amyloidosis, big brave and strong

I would try any trial if possible

Hello Jeannette. When I met my first doctor who was an expert with AL amyloidosis, she noted that I had stage IV amyloidosis and she gave me 3-4 month to live. Then a couple of months later at my first appointment with my amyloidosis cardiologist, he gave me sic months to live. Actually, I did not believe either of them. I was 83 at the time and felt good, except for fatigue and weakness.
I went through Chemo essentially having a good time. When I had barely entered the waiting room at the infusion center, the receptionist would call out my name in a very pleasant voice. The nurses were pleasant and during the five minutes when they had the needle stuck in my abdomen I had a chance to regal them with tales.of my bicycling experiences. Towards the end of my Chemo, when I started having my lungs drained (theracentisis sp?), the receptionist there called out 'SPARKY' as I entered the waiting room. Sparky was an invented name for me. I was treated special and I enjoyed it.
All of that started in January 2023, 3 1/2 years ago, I was 83 at the time and. have been in remission for almost 3 years and feeling good.
Jeannette,my mantra for living with amyloidosis is exercise to your maximum, eat healthy, stay socially engaged, and surprisingly most important is to keep a positive attitude., I recently added 'adjust'. And most important for you as his support is for you to schedule a few time-outs during the day so that you will be able to maintain your health and stamina--he will need this from you. God luck to both of you.
Vern

My limited understanding of Stage 4 AL Amyloidosis is that historically progress was exceptionally poor but the introduction of advanced highly effective protocols have significantly changed outcomes .
From what I understand and have read treatment focuses on stopping the production of toxic proteins to allow an organ to stabilize and possibly shut down the production of the toxic light chain to remove the possible “poisoning “ of the heart .

I have also read that if you can survive the first few months of treatment with the new protocols then the burden on the heart and kidneys decreases

Another factor given the above as to why I would opt for involvement in a clinical trial is that from everything else I read is that if the AL Amyloidosis goes untreated the prognosis rapidly leads to severe unmanaged organ failure within a short timeframe !

I would as you will do listen to the clinical trial representative and your practitioners and discuss outcomes, your unique situation and the options you may have like modified dosing.
As was already expressed by others your husband is young comparatively and perhaps this offers him a better chance for a more successful outcome !

Whatever decision you make I am sure it will be the right one for you and your family !

Hi Leonard! I understand and share the challenges of being alone on this journey. I do have a non supportive spouse in denial. That would be tolerable, if his comments weren't so negative. (" we all die of something"). I also understand your lack of confidence in the disease being more progressive than medical research/care. With a government that chooses to cut funding to pediatric cancer research, there is little chance for "rare" adult disease research. And as there is no preventive treatment for anyone diagnosed without cardiomyopathy, one waits for the other shoe to drop.
Anyone reading with Amyloidosis and not on Medicare yet, make sure to get straight Medicare and buy a supplement. If you get a Medicare HMO you will be limited to care in your home state only. Only Medicare+supplement allows you nationwide coverage. Yes, you can stop the HMO, but a pre existing clause will affect your ability to get a supplement AFTER an HMO.
I am not trying to be negative, rather pointing out reality. Whatever that may be. For me, each day is a good day that I'm not pushing up daisies. We can't have rainbows without rain, so savor it all. The bad makes each good thing shine that much brighter. On a better note, medical is well aware that many elderly CHF deaths are due to undiagnosed Amyloidosis. They are also aware that rarely are elderly autopsied after dying of "natural" causes. Hopefully they will run with that and change the status from rare.