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

What does the latest research show on treating amyloidosis with velcade only without the accompanying use of steroids?

Assuming you’re healthy enough for a SCT, do you perform them on patients who are in CR from CYBORD already? If not, how long do I need to do maintenance chemo? I’m so sick from the chemo side effects?

To determine extent of cardiac involvement, and the likelihood a SCT can be performed, is a cardiac MRI the best test? Echo with strain? If my GFR is 37, should I be worried about contrast?

Is there current research about familial amyloidosis post heart and liver transplant?

Relative to previous question about solid organ transplant and familial amyloidosis, concern is about wild type continued deposit and not recommended use of diflunisal because of kidney concerns.

I have Familial Amy Serine84Ilene
I have denied entrance into 2 clinical trials because I have not progress enough….thoughts on the Right to Try laws…..

My diagnosis, AL Amyloidosis with cardiac involvement, GI tract and peripheral/autonomic nervous system, My most problematic symptom is Chronic diarhea, Can you speak to any new developments in treating chronic diarhea? Will I improve over time?

I received a SCT in January of 2013 and was in CR until now. Recently my lambda was 28.4 mg/dL and was confirmed with a second blood test. Kappa was 2.84 mg/dL and ratio was .10. A bone marrow biopsy was done which showed no activity and was normal. Is it possible that I have relapsed and it not be in the bone marrow? What does this mean?

@patmcgreevy

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

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The webinar started at noon CST; it’s live now.

@catrinka77

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

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Yes, the webinar is mobile optimized.

Not sure who is monitoring comments but an observation, All look good and slides and audio coming through perfectly

Will this presentation be available for viewing at later time?
As well as the posted questions?

For the trial options, can they be tried no matter your age?

@rickslack

Will this presentation be available for viewing at later time?
As well as the posted questions?

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Hello Rick – yes the presentation will be available post webinar on the Connect platform and and also on YouTube. Questions that the physicians are unable to get to during the webinar will be answered and reply posted after.

Where will the responses to the questions not answered during the webinar be posted? How can we access them?