Glad to find this resource
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Friedrich,
Glad you found us and looking forward to hearing how the consults go. I hope the warm weather in Baltimore sticks around into Jan for you (and me).
Take care,
Catherinefried13…….hello and welcome. I like your signature with reference to your radiation treatments!
I assume you are covered by the VA. Reaching out to other centers is of high importance, but wonder about the incurring cost to you personally. Are there specific VA provisions for such services?
Also, I noticed your diagnoses of “intrahepatic” CCA and the physician’s comments of best outcome achieved via liver transplantation.
Our website offers a video for Mayo Clinic Liver transplantation for “hilar” (not intrahepatic) cholangiocarcinoma. Resection is standard of care, followed by liver transplantation for select hilar CCA patients The below webinar will help you understand.
http://cholangiocarcinoma.org/what-patients-need-to-know-about-hilar-cholangiocarcinoma-and-liver-transplant/
There are centers offering liver transplantation for “intrahepatic” CCA as well, but as far as I know, disease must present a singular tumor, no larger than 3 cm in size.
Glad you joined us. Good luck with the upcoming consultations all of which lead to you becoming an educated patient….knowledge is power.
Please stay in touch, we are a tight-knit patient/caregiver community and we are in this together.
Hugs,
MarionDear Friedrich, welcome to our remarkable family but sorry you had to find us. This is the best place to be for CC support. I see you are doing all the best you could do by getting other opinions. What kind of Birthday gift was that??? The gift is probably that they have everything under control, that it was small and they zapped the hell out of it! The best news is that they feel you are eligible for a transplant. That is excellent. YES, go on with your life as life is for the living. Have they mentioned what kind of protocol they want to do to keep their eyes on you?
Enjoy your retirement now as you are in a most beautiful city. Below is a site you may find helpful and please do keep us posted on your progress as we truly care.http://cholangiocarcinoma.org/newly-dx/
Hello all,
I was diagnosed intrahepatic CC on 30 Nov – 8 days after my 62nd birthday and I year after I retired and moved to a new house in Florida. What an event. Initial treatment at Walter Reed where they (medical term) “burned the crap out of the tumor…” The remaining scar is better than a “tat” and serves as a constant reminder about what I need to focus on – HOPE, competent medical care and taking care of myself and family.
I’ve been in touch with a number of centers and will start with Johns Hopkins early Jan, followed by Cleveland Clinic (Dr. Miller). Also have been in touch with several others (Mayo, Emory, Duke,) with planned follow-up as necessary depending on outcomes. My doc at Walter Reed states that in my case, a transplant is my best hope for survival. Fortunately the CC was caught early and the tumor is small with no metastasis.
Look forward to participating on this forum and am grateful to the folks who provide this service.
Friedrich
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