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Old 07-30-2021, 3:02pm   #1
aerovette
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Default 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.

I'm hoping and praying for the best outcome.
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Old 07-30-2021, 3:08pm   #2
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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 2025% 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
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Old 07-30-2021, 3:10pm   #3
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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.
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Old 07-30-2021, 3:16pm   #4
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Sorry man, hope things go well for him.
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Old 07-30-2021, 3:42pm   #5
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Best of luck to him. You too. It's hard when parents get old.
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Old 07-30-2021, 3:44pm   #6
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Best of luck to him. You too. It's hard when parents get old.
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Old 07-30-2021, 6:16pm   #7
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Hoping for the best, but, well, you know.
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Old 07-30-2021, 6:22pm   #8
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Quote:
Originally Posted by aerovette View Post
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.

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.
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Old 07-30-2021, 6:26pm   #9
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Old 07-30-2021, 6:26pm   #10
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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.
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Old 07-30-2021, 6:56pm   #11
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Quote:
Originally Posted by aerovette View Post
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
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Old 07-30-2021, 7:15pm   #12
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Good lick to him
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Old 07-30-2021, 7:35pm   #13
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Good luck to him. !
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Old 07-30-2021, 7:36pm   #14
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Quote:
Originally Posted by MadInNc View Post
Good lick to him
And good luck as well.
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Old 07-30-2021, 7:51pm   #15
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Will keep him in our prayers. May God bless him
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Old 07-30-2021, 8:00pm   #16
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Keeping your dad in my thoughts and prayers
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Old 07-31-2021, 7:06am   #17
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The best of, hoping treatments work.
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Old 07-31-2021, 11:32am   #18
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Hoping for the best.
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Old 07-31-2021, 11:34am   #19
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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.
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Old 08-01-2021, 5:26am   #20
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Thoughts and prayers.
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