I originally went on Twitter simply to promote my blog. I feel like I have an important story to tell and I heard from many who stumbled on my blog that my story gave them hope and encouragement (and some were even entertained by it). Twitter, I thought, would be a good way to find other readers.
But then something bigger and more important happened: I found incredible Multiple Myeloma heroes-- fellow warriors and those working to find treatments and cures. Getting involved in my small way has given me a very powerful reason to press on and to help find of a cure for my illness.
The Cure Panel Talk Show
Which leads me to The Cure Panel Talk Show (http://trialx.com/curetalk/), of which I was a panelist this past Friday. Priya Menon, Scientific Media Editor at Curetalk, was moderator and she interviewed Dr Ajai Chari of Mt Sinai Hospital. Those of us on the panel were able to ask many questions about clinical trials, upcoming treatments, barriers to participating in trials, and how to overcome them. You can listen to the show by clicking here: http://trialx.com/curetalk/2013/09/clinical-trials-cost-a-minimum-of-10k-15k-per-patient-dr-ajai-chari-of-mount-sinai-hospital-in-conversation-with-panelists-on-the-cure-panel-talk-show/
Some of the things that I learned on the show were:
- Something like 3 percent of Multiple Myeloma patients participate in clinical trials
- We must increase those numbers and increase awareness of the importance and advantages of participating in clinical trials
- Myeloma patients are living longer and longer (yeah!!!), though there is no cure yet (but there is hope!)
- One example: an 18 year survivor has received many drugs thanks to trial participation and this probably has a lot to do with surviving this long, especially since so much has happened in the field of this disease since he was diagnosed
The site has an amazing array of information for those in the Myeloma world. One of my fellow panelists and Myeloma survivors, Pat Killingsworth, wrote about the importance of getting at least 30 minutes of exercise per day, even when one is in the midst of transplant. Wow- that is tough but I think most days I've done that. I hope it helps!
I am on a quest. I don't want to just be in and out of treatment for the rest of my life. I want a cure to be found. And to the extent I can push that forward in my small way, I'm going to do it.