Medical Advisory Counsil Update
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Hi Lainy,
I would always bet on you against anything or anyone!!! so i know the remicade infusions will go well – good luck on 9/20 .
Mary
I sooo like the sound of his good feelings about your Remicade infusions!! Good news all round there me thinks!
Went to my GI today and told him how he and Dr. Javle look like twins, he said, “they must have used my picture”. BTW he told me that he has good feelings about my getting Remicade infusions and I start Sept 20th, yikes. He also told me that when I was so sick in February only 10 inches of my colon was good. Now I only have 1/3 to get better. I did not realize that. Good news as we both feel at my age there would be no more drastic surgery. Cheez that makes me feel old! Hey, if this works watch out….you don’t know the old me and I don’t mean age wise. Watch out world here I come….again!
Thanks for that Marion, what a great team indeed! Looking forward as well to hearing about the others when they are listed. An absolute ton of experience and knowledge there!
The distinguished physicians are in support of the work we doing on behalf of the cholangiocarcinoma patient community. Most have lead or are leading major reserach studies focused on this disease. They will lend their expertise to the numerous projects we are focusing on and support those projects still under consideration or not yet developed.
From what I have learned though is that you can gather 100 experts and you can expect major disagreements amongst physicians and researchers in re: to treatment protocols and options. Hence, for second (or more opinions) you would need to follow the regular channels i.e. make contact through their individual institutions.
Hugs,
MarionWell said Regina. I agree. I would love to be able to submit my wife’s information, CT scans, etc. to this board as a “tumor board” approach whereby they could confirm existing care and treatment as well as suggest next steps. e.g. We have been told to 1) stay on maintenance chemo for up to one year. We have also been told to 2) start radioembolization within 3 months. Finally, we have been told 3) be patient. Let’s see what the next CT scan shows before we talk about next steps.
That’s a very broad range of opinions (which is all they are). I’d love to be able to get an evaluation/assessment from a REAL Cholangiocarcinoma Tumor Board, which we appear to have.
Carl
This is a fantastic list! How, exactly do they participate in this organization? It’s tempting to put out a mass email to them and see if someone offers a bid!
Marion this is VERY impressive. BTW Dr. Javle could be a twin to my Dr. Mahajani my GI guy! We all appreciate all the work you have put in to this as it reads like a whose who of ONCS! Thank you so very much for all you do.
We are grateful to have the support of these distinguished physicians and those not yet listed, but are in the process of being added.
http://www.cholangiocarcinoma.org/medicaladvisorycouncil.htm
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