stacie
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Pauline,
My brother Mark had mets both on the Omentum and the Peritoneum. Marion’s explanation was good. I don’t want to give Mark’s full history here, but send me an email and I’ll try to answer any of your questions.
We will be there Barbara. I want to meet with Dr. Lenz as well as several of the other specialists.
Stacie
So glad you asked. I am posting the information for the conference. The date, location and time have changed several times as well as the sponsor. Here is the final.
https://www.aasld.org/eweb/DynamicPage.aspx?webcode=BiliarySTC_08
Welcome Linda,
We are very happy to have you. Sorry about your dad. That the lesions is small can be a good sign. Could possibly mean that he would be eligible for surgery. Sloan-Kettering is a highly recommended hospital and they do have experience with cholangio. Try looking there.
Good luck and keep us informed.
Stacie
Katia & Silvia,
We are all so heart sick about your loss. Thank you for sharing your decisions and your struggles with us.
Much love to you both,
Stacie
Richard,
Thank you for your post. You bring up a lot of valid concerns. This is on our list of pages we would like to add to the website. I wish we had something for you right now, but we are not able to work through the pages as quickly as we would like.
I know this won’t help you right now, but as the pages become available we will let you know.
Stacie
JeffG,
We will have some “helps” for those who want to do local fundraisers which will be on the website soon. Our first newsletter (coming soon), will be spotlighting one of these efforts in particular and we will continue to post success in that area.
I think the New Year is going to bring wonderful things for this community!
Stacie
Perhaps a brief introduction to Geret N. Giles Ph.D.
Dr. Giles is our resident psychologist, he is a marriage and family therapist. Didn’t know we had one of those did you?
He will be participating on the new website in three ways to help you.
1. Articles in upcoming newsletters
2. Host live chat sessions in the new year.
3. “Ask Dr. Giles” – this will be a new part of the website, where you will be able to ask about specific issues you need help with.We hope you are looking forward to all the new website will have to offer just as much as we are.
Much love to you and yours,
Stacie
Also, be sure to have the Dr’s who did the treatment write letters to your insurance company letting them know how important the treatment was and that it is working successfully.
Stacie
Just do a search, there are several people who have had this treatment.
Keep on pushing with your insurance company, we had to play hard ball several times. You may also find out if Blue Cross has an advocacy service. Where they provide an advocate who works with the insurance company in your Dad’s behalf.
Stacie
Peter,
You are just spectacular. Perhaps once the new website is up and running you’ll have to do a live chat with those who are interested and give a few of the basics.
Stacie
Just wanted to post an update on the three year old. I know we were all alarmed at the post. I did speak with her mother on the phone immediately after she originally posted and gave her some information from one of the top cholangiocarcinoma researchers in the world. He gave me a list of questions and several other things that her Dr’s needed to consider before they diagnosed her with cholangiocarcinoma.
I’m received and update to her care page today and you will be happy to know she does not have cholangiocarcinoma and it is not cancer, she does have a disease that may require a liver transplant.
Stacie
