Amyloidosis - Any knowledge or experience?

[TBS]

Nothing came up on search, and it's outside the ortho focus, but thought I'd ask anyway

Good friend of mine was just diagnosed with Amyloidosis. From my med-jong reading, it looks like your body makes proteins that destroy your organs. No known cure. Basic treatment looks like chemotherapy.

Anybody here know anything about this? How well do treatments work for arresting progress, prospects for a reasonably active life after, and for how long? What kind of decline?

Thanks

[Huskier]

Nothing came up on search, and it's outside the ortho focus, but thought I'd ask anyway

Good friend of mine was just diagnosed with Amyloidosis. From my med-jong reading, it looks like your body makes proteins that destroy your organs. No known cure. Basic treatment looks like chemotherapy.

Anybody here know anything about this? How well do treatments work for arresting progress, prospects for a reasonably active life after, and for how long? What kind of decline?

Thanks

Sorry to hear about your buddy. In terms of outlook, it depends on what's causing it and how long it's been going on. You can have primary amyloidosis (protein's there for no other reason), or secondary (protein's being made as a byproduct of some other disease like diabetes or rheumatoid). I'm guessing since your buddy didn't say he had anything else, it's probably primary. There are different types of primary amyloidosis too, some common and somewhat treatable, some not so much. If it's one of the more common versions, the basic chemo regimen is one or two drugs, and typical chemo effects occur in ~40% of people, less for others. How much he's going to want to get out and ride is hard to say. There are some tough motherf*ckers out there. Most people get hit with fatigue (at the very least) pretty hard, though. Different studies state different results in terms of symptoms, lifespan with treatment. The good news is that if it is the more common AL-type, and his heart isn't involved, a couple studies describe remission (No active disease) in ~70% of people, and if it comes back, it's still sensitive to the same drugs (A really good thing). During remission, people are usually symptom-free, and go back to their old lives. In people that have cardiac involvement, average survival is around a year, and they're usually hit pretty hard during that time. Again, this is supposing he has that one type. If it's a different one, all bets are off.

Anyway, short answer is if they caught it early there's an OK chance he'll get better or at least not get any worse, but chemo is chemo. You sound like a pretty supportive friend, and he's lucky to have you around, but don't be surprised if he has to take things down a few notches for a while. Also, it sounds sort of extreme, but ask him if he's looked into a stem-cell transplant. Not all hospitals do it, but for people who qualify (have the right disease, at the right stage) it can work quite a bit better than chemo.

[TBS]

Thanks for the insight HDoc. Bud is in Boise, but is headed soon to some specialist at Mayo clinic in Phoenix (don't recall the Docs name) for full test work up. Determine primary vs secondary, treatment options. Sounds a lot like cancer staging tests.

He feels pretty good right now other than the kidney/liver pain which just started (and led to the diagnosis).

Good to know about the AL remission rates and "do-over" success with the same drugs. Will ask about the stem cell options. No doubt the activity levels will drop during chemo, but we are of an age where there's nothing to prove except that we can still have fun.

Thanks again

[Meadow Skipper]

Sounds like the suck. Best wishes to your amigo.

[TBS]

^^^ Thanks. Attitude is good, as is a solid understanding of his line between quantity and quality of life. Whatever comes will be handled with class

[skinipenem]

Amyloid = Bad.

good luck to your friend. I hope he does well.

[kmkmkmk]

Just saw this thread. Hope to hear good news about your friend's prognosis?

My father was diagnosed with primary amyloidosis in March of 1986 and passed away in November of that year. But I understand that there have been great strides made in treatment since then.