judym
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Melinda, thank you so much for the update and for your offer to help others. It’s great to hear! I have a quick question, too i you have a chance..- by tumor sequencing do you mean what firms like Foundation Medicine analyze from the cancer tumor sample to analyze genetic mutations– or is it another kind of test?
Very interesting. Is genetic testing required to determine eligibility and if so, what specific genes are being looked for? Do you know what the trial # is?
I also didn’t realize that the bag had to be frozen before the blood draw–that meant a second visit to the doctor’s office where I was also surprised that there were 5 vials of blood required. not just one. There was wait time for the blood to clot, as well. The local hospital would NOT draw blood for me– I had to go to my own doctor’s office. But I had no trouble at all dropping off the sample in the box Mayo provided at the local FEDEX since postage was prepaid.
Just wondering…What are the hospitals/who are the physicians and immunogists leading the exploration of immunotherapy for cholangiocarcinoma? What are the opportunities for the inclusion of cholangio if FDA approval is received for treatment of a different cancer?
I am trying to obtain crucial information about this disease and treatment options as the family caregiver–not the patient– and I am running into brick walls with some of the leading doctors recommended on this website. They will not speak to me, discuss the case, review scans or reports that I have available from –and full approval (HIPAA) of the patient to send out– unless the patient is comes to his/her office in person. That is not possible. Thus, aside from this website and info on the web, how can reliable, detailed information be obtained if not from the leading doctors and their associated hospitals? Please advise.
Marion, I am looking forward to meeting others and attending the dinner. Will it be near the hotel? judym
Hi Jeff, You write so well. Thank you for sharing your thoughts/emotions. There seems to be one or more CC or Biliary Tract Cancer (3 ran the LA marathon) groups in LA and I am wondering how to connect re best docs/trials. Any ideas? Best, J
Melinda, do you have the name/number of your clinical trial? Was it just for the lungs or were you treated for CC? I am very interested to learn more. Who was your doctor? Thanks, Judym
Great. Stacie mentioned the conference to me, too. Can anyone attend? Is there a way to invite others in the area to join us for coffee/tea?
