Novartis Oncology Kick-Off Meeting

Just returned home from speaking, along side with Tricia McAleer from the Life Raft Group, at the Novartis Oncology Kick-Off Meeting. This is a meeting at the Novartis campus where they talk about all of the research they are doing, and they like to hear from patients and other groups who are affected by or involved with said research...as in GIST and Gleevec. It was held in a fairly large auditorium,

with probably 250+ folks in attendance.













Before Tricia and I sat in those chairs, we watched a short video of their meeting from last year in Dallas, featuring the Pulitzer Prize winning author Siddhartha Mukherjee, who won the prize for his book.."The Emperor of All Maladies..A Biography of Cancer"...which I found to be very inspiring!

And, Novartis gave me a copy of the book-can't wait to read it!

Their moderator, Tracy, asked me about my symptoms, the various stages of the diagnosis, everything leading up to where I am now which is coming up to year 3...cancer free!
When I told the audience that the tumor was 13 lbs there was a huge collective gasp in the auditorium. Now, if you've ever heard several hundred people gasping at once, it can be quite a jolt, so I kinda laughed after I said that and said.."yes, that's like having twins or one really huge baby"...which of course they all laughed and the tension in the room was gone...and we continued.

I talked about the need for Novartis to educate us more about the science behind Gleevec, and what exactly is it doing in our bodies, what causes the side effects, are there nutritional deficiencies, and more information on the studies and stats of adjuvant therapy.

 After we spoke and left the auditorium, a doctor from Novartis came up to me, handed me his card and told me to get in touch with him and he would help me with a lot of the questions I had posed, so I hope to be talking with him in the very near future.

I also thanked all of them for their work on GIST cancer and on Gleevec...I don't think we Gisters could ever thank them enough.

They asked me for photos so I sent them photos of me at Lake George (very short hair), the recording session with the Inside/Out Trio (hair is curly and longer) the big band gig at Trumpets in 2011 (hair is still curly and much longer)...thought it would be good for them to see the healthy transformation.
 They were ecstatic to hear that I was back to performing, composing and teaching.

Tricia talked about the role of the Life Raft Group, their research, and their outreach. She also talked about the need for more information from Novartis and perhaps personal contact with patients to guide them through the process.

It was a really great morning, and a big shout out and thank you to Leslie Fields, their Associate Director of Patient Advocacy, for making it so easy and laid back for Tricia and I to participate (not to mention the yummy breakfast!)

Life Fest 2010

I will be attending-through music-the Friday night gala of Life Fest GIST 2010:A Decade of Difference sponsored by the Life Raft group-an organization dedicated to helping those of us with GIST.
This rare disease that I have called GIST has only been around for 10 years. But what a difference 10 years can make. I am inspired by Tania Stutman, founder of the GIST Cancer Research Fund, who upon learning that she had this rare disease over 10 years ago-went door to door -by herself-soliciting donations that she gave to cancer researchers to figure out what GIST actually was.
On their website-it states that they have given away $1 Million to GIST cancer researchers to find a cure-that's totally awesome!
I am inspired by the folks at Life Raft who have organized this event called Life Fest, bringing together fellow GISTers, doctors, and researchers to educate and illuminate all of us about the recent medications, trials and what's next.
Both groups work tirelessly with doctors, researchers and GISTers towards understanding the disease, promoting and funding new research, networking with GISTers to find the right doctor, the right medication, testing and sometimes just a time to talk.
Without both of these groups-I would be completely lost-so I am extremely grateful to their hard work and dedication to helping all of us who have GIST.

mystery of the hair loss.....vitamin D

So I heard from my oncologist-it seems I am deficient in vitamin D-so now I'm taking 2000 IU's a day. I also found some biotin shampoo and conditioner that doesn't have a lot of chemicals in it-so I'm using that too. In talking with friends about this vitamin D business-I have found out that a vitamin D deficiency is the number one deficiency in the northeast. So if you're feeling fatigue, hair loss, memory loss and foggy brain, it's probably becuase you're not getting enough vitamin D-and don't forget-you have to take it with calcium in order for your body to absorb vitamin D. You could also sit in the sun for 15 minutes a day-unfortunately I can't-it's one of the big no-no's while taking Gleevec. However, I have been getting in the sun for 5 minutes here and there-and then ducking for cover-ha! I did hear from someone with GIST-on the Life Raft Support Facebook page-where I posted the hair loss problem-and she basically said all of the above-so maybe the hair loss is a lot more prevalent than my doc or Novartis knows....I'll be letting them know, you can bet on that. http://apps.facebook.com/causes/144710/27148611?m=6d54c0aa
You guys probably know this already-but in case you don't-the other new health tip I learned is for people with allergies, to eat local honey-it has to be within a 50 mile radius of where you live-and that should take care of your allergies.