Wednesday, October 2, 2013

Cure Talk Support Group panel recap

 
Have I told you how happy I am to have found Cure Talk (www.trialx.com/curetalk)? A few days ago, I participated in a Myeloma support group show. You can read the summary below and listen to a recap of the show by clicking here: http://www.blogtalkradio.com/curepanel/2013/09/30/myeloma-survivor-paula-shares-her-story-live-on-air.

Knowledge is power.

On Pomalyst and Carfilzomib (Kyprolis) Now, Paula van Riper Shares Her 14 Year Journey with Myeloma

We had a wonderful guest with us on our Live On-Air Myeloma Support Group Meeting broadcast on 30 September 2013 @ 6pm ET- Paula Van Riper. Paula is a 14 year myeloma survivor and has been treated with the recent FDA approved drugs pomalidomide and carfilzomib.
 
The meeting was hosted by support group leaders Pat Killingsworth and Cynthia Chmielewski and started off with Paula chronicling her myeloma journey beginning with her diagnosis in 1999, followed by hip replacement, two stem cell transplants in 2002, compression fracture in 2007, drug holidays, side effects, and how she coped with it, all the while working.
 
It’s an amazing and truly inspiring story, Cynthia’s question on whether Paula was on any clinical trial for the new drugs was very interesting.
Paula answered many questions sent in by the listeners on whether she followed any particular myeloma diet and if she has experienced elevation of blood sugar level while on pomalidomide etc.

We also had Lizzie Smith (that's me!) our Cure Panelist, come live on air to ask Paula a few questions.
 
We thank everyone who participated and look forward to having all of you on our next show.