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Aerovette 07-30-2021 3:02pm

Bad day for dad
 
My dad was diagnosed with Amyloidosis about a week ago and they went for a pre-biopsy consultation today to try to determine which type. The doctor decided the biopsy was not necessary as he is certain it is in my dad's bone marrow. He was referred to a Hematologist that can see him "sooner than later" (doctor's words). I know little about this disease but it is suspected that my dad's mother possibly passed from the same thing. That puts me next in line.

Some mentioned treatments were chemo, and stem cell transplant.

He's certainly had better news. :(

He'll be 82 on August 10th. He's my own personal Superman. :seasix:

I'm hoping and praying for the best outcome.

Mike Mercury 07-30-2021 3:08pm

from Wikipee:

Quote:

There are about 30 different types of amyloidosis, each due to a specific protein misfolding. Some are genetic while others are acquired. They are grouped into localized forms, and systemic ones.

The four most common types of systemic amyloidosis are light chain (AL), inflammation (AA), dialysis-related (Aβ2M), and hereditary and old age (ATTR and familial amyloid polyneuropathy.

Treatment

Treatment is geared towards decreasing the amount of the involved protein.

Treatment depends on the type of amyloidosis that is present. Treatment with high dose melphalan, a chemotherapy agent, followed by stem cell transplantation has shown promise in early studies and is recommended for stage I and II AL amyloidosis. However, only 20–25% of people are eligible for stem cell transplant. Chemotherapy and steroids, with melphalan plus dexamethasone, is mainstay treatment in AL people not eligible for transplant.

In AA, symptoms may improve if the underlying condition is treated; eprodisate has been shown to slow renal impairment by inhibiting polymerization of amyloid fibrils.

Management of ATTR amyloidosis will depend on its classification as wild type or variant. Both may be treated with tafamidis, a low toxicity oral agent that prevents destabilization of correctly folded protein. Studies showed tafamidis reduced mortality and hospitalization due to heart failure.[28] Previously, for variant ATTR amyloidosis, liver transplant was the only effective treatment. However, newer therapies including diflunisal, an anti-inflammatory drug, and inotersen and patisiran, drugs which prevent misfolded protein formation, have shown early promises in slowing disease progression. The latter two drugs have shown their benefit in neurological impairment scores and quality of life measures. However, their role in cardiac ATTR amyloidosis is still being investigated

Aerovette 07-30-2021 3:10pm

Quote:

Originally Posted by Mike Mercury (Post 1901228)
from Wikipee:

He is suspected to have the AL type. A bone marrow sample needs to be taken to be sure.

He was told under no circumstances should he get the vaccine.

Rodnok1 07-30-2021 3:16pm

Sorry man, hope things go well for him.

Giraffe (He/Him) 07-30-2021 3:42pm

Best of luck to him. You too. It's hard when parents get old.

The_Dude 07-30-2021 3:44pm

Quote:

Originally Posted by Giraffe (Post 1901238)
Best of luck to him. You too. It's hard when parents get old.

:withstupid::angel:

snide 07-30-2021 6:16pm

Hoping for the best, but, well, you know. :angel:

Datawiz 07-30-2021 6:22pm

Quote:

Originally Posted by aerovette (Post 1901225)
My dad was diagnosed with Amyloidosis about a week ago and they went for a pre-biopsy consultation today to try to determine which type. The doctor decided the biopsy was not necessary as he is certain it is in my dad's bone marrow. He was referred to a Hematologist that can see him "sooner than later" (doctor's words). I know little about this disease but it is suspected that my dad's mother possibly passed from the same thing. That puts me next in line.

Some mentioned treatments were chemo, and stem cell transplant.

He's certainly had better news. :(

He'll be 82 on August 10th. He's my own personal Superman. :seasix:

I'm hoping and praying for the best outcome.

Beautiful thoughts for your dad. He and I share the same birthday, and I'm confident he's a better electrician than I am.

dvarapala 07-30-2021 6:26pm

:sadangel:

bill_daniels 07-30-2021 6:26pm

Damn, sorry to hear this. Let's hope medical intervention will work for him.

Is stem cell transplant the same thing as bone marrow transplant? Would you be able to donate to your dad? If not, and he's needing a donor, pm me details about how to get tested.

99 pewtercoupe 07-30-2021 6:56pm

Quote:

Originally Posted by aerovette (Post 1901230)
He is suspected to have the AL type. A bone marrow sample needs to be taken to be sure.

He was told under no circumstances should he get the vaccine.

Bone marrow sample taking is tons of fun. I went through it three times during diagnosis and treatment for HCL in the late 80s. It still beats the alternative. Good luck to him

MadInNc 07-30-2021 7:15pm

Good lick to him :yesnod:

Thunder22 07-30-2021 7:35pm

Good luck to him. !

dvarapala 07-30-2021 7:36pm

Quote:

Originally Posted by MadInNc (Post 1901284)
Good lick to him :yesnod:

And good luck as well. :yesnod:

Dan Dlabay 07-30-2021 7:51pm

Will keep him in our prayers. May God bless him:angel:

Black94lt1 07-30-2021 8:00pm

Keeping your dad in my thoughts and prayers

Norm 07-31-2021 7:06am

The best of, hoping treatments work.

lrobe22 07-31-2021 11:32am

Hoping for the best.

Aerovette 07-31-2021 11:34am

This disease does not have a very good prognosis. We are going to try to get him in a clinical study. The upside is that it is not placebo vs drug. It is historical treatment vs historical treatment plus an added drug.

LisaJohn 08-01-2021 5:26am

Thoughts and prayers.


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