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Introduction
Introduction
Measuring the free light chains in one's blood is key to finding AL amyloidosis.
Here is a link that sheds more light on the light chains test: https://www.testing.com/tests/serum-free-light-chains/
Informative Videos
Informative Videos
Below are links to insightful Youtube videos.
I am very grateful to all the presenters and everyone involved in these productions. They all helped us understand an illness we had not even heard of before June 2021.
Diagnosis and Treatment of Amyloidosis - Dr. Suzanne Lentzsch
Diagnosis and Treatment of Amyloidosis - Dr. Suzanne Lentzsch
Listen what Suzanne says at 44 seconds into the video..
Mayo Clinic Q&A podcast: Successful treatment of cardiac amyloidosis depends on early diagnosis
Mayo Clinic Q&A podcast: Successful treatment of cardiac amyloidosis depends on early diagnosis
Diagnosing and treating AL amyloidosis: a 2020 update from Dr Morie Gertz
Diagnosing and treating AL amyloidosis: a 2020 update from Dr Morie Gertz
ASG AL Webinar October 29, 2022
ASG AL Webinar October 29, 2022
Venetoclax For Myeloma | Therapies on the Horizon
Venetoclax For Myeloma | Therapies on the Horizon
The video above is presented by ARIEL GRAJALES-CRUZ, MD from the MOFFIT CANCER CENTER
It is a medicine that is effective for patients with translocation t(11;14)
Listen at what he says from the point identified by the hyperlink below:
https://youtu.be/AJqKqYX9T7Q?t=223
The video is from HealthTree University for Multiple Myeloma who offers a comprehensive online myeloma curriculum with lessons, quizzes and course discussions.
Updates on AL Amyloidosis Treatment: What is New in 2022: Giada Bianchi, MD
Updates on AL Amyloidosis Treatment: What is New in 2022: Giada Bianchi, MD
In this presentation, Giada Bianchi, MD discusses recent advances in the treatment of AL amyloidosis, a plasma cell disorder. Presented at the 2022 Dana-Farber Cancer Institute Multiple Myeloma Patient Education Symposium. For more information, visit: https://www.dana-farber.org/amyloidos.-program.
Cardiac Involvement
Cardiac Involvement
Cardiac Amyloidosis by Dr. Mat Maurer
Cardiac Amyloidosis by Dr. Mat Maurer
Cardiac Amyloidosis presentation focused on light chain (AL) amyloidosis by Mat Maurer, MD, Director, Cardiac Amyloidosis Center and Professor of Cardiology, Columbia University Medical Center.
At 15:51 in this video Mat explains why the Ejection Fraction (EF) is No Good in Cardiac Amyloidosis.
It is followed by an explanation of the Cardiac Output of the Heart which helps one understand why the heart rate is elevated in amyloidosis patients.
At 20:53 the concept of Myocardial Contraction Fraction (MCF) is explained.
MCF = Amount the heart pumps divided by the amount of "muscle" to pump the blood.
Cardiac Amyloidosis: Quick Tips on Amyloid-specific Therapy
Cardiac Amyloidosis: Quick Tips on Amyloid-specific Therapy
Look up to 3:30 minutes for information about AL Amyloidosis
Diuretics
Diuretics
Skin Involvement
Skin Involvement
www.pcds.org.uk/clinical-guidance/amyloidosis-cutaneous
Skin involvement occurs in about 30-40% of patients.
Plural Effusions
Plural Effusions
https://www.sciencedirect.com/science/article/pii/S1878540920300037
In their conclusion they write: Pleural amyloidosis should be taken into consideration when treating patients with refractory pleural effusion associated with amyloid cardiomyopathy.
Thyroid Hormone Levels
Thyroid Hormone Levels
Not much is written about the role of T3 levels in the blood of a person with AL.
We found that T3 levels sometimes test low, even though TSH and T4 levels are within normal limits. I would like to know if the amyloid fibrils deposited throughout a patient's body interfere with the conversion of T4 into T3 in the body.
I found links relating to AL amyloidosis, hypothyroidism and reduced tissue availability of thyroid hormones on the Internet.
and here is a link to the original article by Dr E. Muchtar and M Gertz, Chair Emeritus Department of Medicine at Mayo Clinic, in reply to n the perspective above.
Unravelling hypothyroidism in AL amyloidosis: Authors' reply (The author referred to in the link in the hyperlink on the left is Dr E. Muchtar)
A pharmacist’s review of the treatment of systemic light chain amyloidosis
A pharmacist’s review of the treatment of systemic light chain amyloidosis
Here is a link to an article that was originally published in 2020:
A pharmacist’s review of the treatment of systemic light chain amyloidosis
The objective of the article broadly, when published, was to provide an up-to-date guide to treatment considerations for systemic AL amyloidosis in both the front-line and relapsed settings.
Living with a Rare Disease
Living with a Rare Disease
I came across this article and Youtube video, and I think it is worth sharing here.
Watch the video here to the left, and also click on the link below for the full article.
www.hcplive.com/view/darcy-tannehill-al-amyloidosis
From the article:
"In 2012, the incredibly accomplished Tannehill was diagnosed with light chain—or AL-amyloidosis, but for the six years prior, she had been experiencing an array of symptoms characteristic of the disease’s typical early presentation. It started with gastrointestinal issues that she attributed to food allergies, and continued with differences noticed in her hair and fingernails, and eventually led to her having carpal tunnel syndrome. Her primary care physician (PCP) suggested that she might be vitamin deficient, but no vitamins ever made a difference.
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