Video Q&A about Amyloidosis – What Patients Need to Know

Will this webinar be able to be viewed on a mobile phone?

Is organ tropism consistent over the life of a patient with AL? I have liver, kidney & GI involvement. How likely is it that I could develop cardiac involvement if I relapse?

I was diagnosed in 2011 with AL amyloidosis with only one organ affected the liver. My major symptom was jaundice. Is it possible when the disease will come back that it will stay in the liver not affecting other organs?

One more….is Amyloidosis a cancer or not? I have seen some physicians call it cancer, some have referred to it as MGUS–I say the significance is pretty well known to me, a hematologic condition. 🙂 If it isn’t cancer, why not?

Why you dont give egcg curcumine and reveratrol in your patients? If you look up in internet werner hunstein egcg, you see the life from oncologist take egcg for this disease ans that work.marylou, my wife was diagnostiquee as younger patient of Belgium d amylloidosis’localised al in the heart, the most eminent specialists of France wanted to change her heart which was thickened is 19 mm. She underwent 3 months of chemotherapy which was l hell, she has almost dead 3 times, has the end of every cycle. She has of to stop the chemotherapy which caused her a peripheral neuropathy. She has begin has to look after itself with the green the, of the curcumine, of propolis and other natural things and in August it had another septum measure has 19mm, in November, 17mm, January, 14mm and now 12mm. Blood tests are good, the curcumine high dosage for decrease free light chains and the green the prevent the light chains from going back up. The life is beautifull now

Do there have to be separate trials for cardiomyopathy; wouldn’t any drug that slows the deposit of amyloidosis help the heart as well?

For everybody
http://www.hunstein-egcg.dehttp://www.ncbi.nlm.nih.gov/pubmed/20221615http://www.ncbi.nlm.nih.gov/pubmed/22620965http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445797/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3254632/http://cancerres.aacrjournals.org/content/73/8_Supplement/459.shorthttp://www.ncbi.nlm.nih.gov/pubmed/25554227http://www.ncbi.nlm.nih.gov/pubmed/25436420http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3189735/http://www.alliance-du-dr-rath-pour-la-sante.org/lettre/phytobiologicals_5_egcg.pdfhttps://clinicaltrials.gov/ct2/show/results/NCT01511263
https://dl.dropboxusercontent.com/u/7106709/BindingEGCGtotransthyretin.pdf

Is there a simple explanation why the NEOD drug works for some individuals and not others when it comes to improves organ function?

Where are the study where we see how work NEOD-001 with mesurement like for exemple septum thickness for the heart . For Egcg, we have the study.we see that decrease. for neod nothing mesurements, juist nt pro bnp.why

With cardiac TTR-wild type, what are the advantages/disadvantages of CRT (cardiac resynchronization therapy-defibrillator) in improving EF, Afib, and reducing amyloidosis sypmtoms?

dx AL Oct 2013
ASCT Dec 5 , 2013
Neuropathy and proteinuria main effects ( I also have bilateral Brachial plexus neuropathy)
Kidneys still functioning ok
Blood numbers and chem numbers in acceptable ranges
FLC went to normal with normal ratio 6 months after ASCT

Last blood work Lambda was up out of normal very slightly 28.2 (26.3 is high end of normal)..
Kappa fine at 14.3
Ratio fine at .51
No other sign of disease progression
Question:
Not worried at slight bump yet…but when would I need to be concerned about higher FLC…was around 100 I believe at diagnosis

A scant amount of AAPOA IV was found in my kidney. Is there a way to see just how much is in my body and is this considered a primary type or a hereditary. Would there be a different treatment regarding.

was this to start – nevermind. CDT. Thanks.

Thought this was to start at noon on 6/4. Problem with technology?

@patmcgreevy

Thought this was to start at noon on 6/4. Problem with technology?

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It starts at noon Central Time. 30 more minutes.