September 24, 2008 at 6:08 am #22900devoncatMember
You and Marion are amazing. Thank you so much for doing this. It sounds like so much is happening or has the opportunity to happen. It is like the story of the rock being thrown into the water and the ripple effect.
KrisSeptember 23, 2008 at 11:48 pm #1568stacieMember
This weekend we were in Boston for the ASTRO Conference. We had a beautiful booth, provided for free by ASTRO and we were so grateful, we were directly across the aisle from the Lance Armstrong Foundation, can you believe it! We’ll post pictures as soon as Marion returns. She is staying through Wednesday to wrap up the conference, my 5 little people needed me at home for school so we did what we could on the weekend.
Although the traffic through the advocacy area was not heavy, we had some very important things happen. We had several nurses stop by, very grateful for the information we shared with them. I visited extensively with the ONS (Oncology Nursing Association) which were present at the conference and the head of the association after talking with me, crawled under the table of the booth and pulled out a directory for me of every active chapter of the nursing oncologist society. She said, here you go, you just send them the information, they’ll get it to your patients – I could have cried.
Next a Dr. from the NCI stopped by and chatted with me about what’s going on or NOT going on at the NCI. He said, we get proposals for grants for cholangiocarcinoma studies but there aren’t enough patients particpating for the research to translate. I asked him what he suggested and how we could go about getting the NCI to take notice. He gave us some helpful insights.
Several radiologist stopped by our booth and could not believe there was a foundation for cholangiocarcinoma. One in particular said, my colleague and I just finished writing a book on it, said he would send me a copy and took a bunch of the literature to share with his patients. He said, we’ve got to talk when we both get home, we’ve got to work together. All of them were very happy to know we existed and that we had some things to help the patients and caregivers.
Several nurses stopped by wanting information and talked with us. We visited with Dr’s from all over the world.
Marion will share with you some of the other exciting things that happened upon her return. I attended a session where 6 different groups reported on studies they had done in the GI area. One that showed some positive results (extended life about 5-7 months in some cases) came out of France, where they had done surgery, then chemo then addition chemo in conjunction with radiation but this was early data and has not been replicated yet.
There was a poster discussion on cholangiocarcinoma out of the University of Colorado. I wasn’t able to locate this Dr. So I tacked one of our brand new brochures and my card at the bottom of his poster Hopefully, he’ll find us.
Marion, spent today in several GI sessions and passing out literature afterwards to every attending radiologist.
Cyberknife also had a session on GI cancers and what they are doing in this area.
It was very interesting to talk with the other advocates there. The Wellness Community out of Boston took a bunch of our brochures as they have had two members with cholangiocarcinoma.
All in all it was great to be there, and talk with so many physicians, nurses and hospitals about what we can do and get them information about us.
I know Marion will update you further and I’ll post the pictures of the booth later tonight.
Much love to all,
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