Forum Replies Created
January 11, 2018 at 11:38 pm in reply to: My Father Aged 57 Diagnosed with Cholangiocarcinoma (Dec, 2017) #96432
welcome to our special group, although i’m So sorry your father has been diagnosed with Cholangiocarcinoma. I am so impressed with how well researched and clear headed you are in one short month since diagnosis. This disease generally throws a gut punch that can knock us off our feet for a bit. I can tell you will be a great advocate and source of information for your dad.
My best advice is to have your dad evaluated by a multidisciplinary medical center that is expert in Cholangiocarcinoma. I can’t emphasize strongly enough how much that matters. Community hospitals simply do not have the experience to know what treatment options are available or the expertise to successfully treat. If your dad is in Ontario, CA, there are a number of excellent centers in that general area. If you go to the main Cholangiocarcinoma Foundation website and follow the newly diagnosed tab, there is a link to expert centers by geographical location. My husband also had a Klatskin tumor and was initially told he was unresectable. I called several expert centers and asked their protocols for obtaining second opinions. We obtained a remote opinion from John’s Hopkins Medical Center ( concurred with original opinion but suggested gem/cis to try to shrink tumor so that he may become eligible for surgery) and an in person visit with UCSF oncologist who brought case to their tumor board, where surgeon offered surgery).
i wish your dad all the best in this fight. Please keep us posted on his progress.
debbieJanuary 1, 2018 at 11:19 am in reply to: Scalp recurrence of cholangiocarcinoma after curative hepatectomy: A report of t #96369
Oops, should have typed “that’s MY takeaway as well”January 1, 2018 at 11:19 am in reply to: Scalp recurrence of cholangiocarcinoma after curative hepatectomy: A report of t #96368
that’s take away from the article as well. Although it’s highly unlikely that we’ll get any of these very rare CC mets, it’s important to be vigilant and have things checked out.
I am also grateful to Gavin for all the research provided to us !!
Happy New Year to you, Gavin, and to all our discussion board members and their loved ones. May 2018 bring more research breakthroughs and new, effective treatment options!!!!
welcome to our wonderful group, although, of course, we all wish you had no need to find us. In my experience, the general medical centers have very little experience with Cholangiocarcinoma, and will give patients the statistics you mentioned. Essentially, palliative care. However, the medical centers that specialize in biliary cancers try to find ways to get the patient to surgery, or to newer treatments. I’m no familiar with which centers in New Zealand specialize in Cholangiocarcinoma. I’m hoping some of our members from NZ will chime in to point you towards them. Hang in there!
Welcome, dnbeppler. I am so sorry your sister-in-law has been diagnosed with Cholangiocarcinoma. She is in good hands at MDA. I’m sure it will be very helpful to your sil for you to research this disease, treatments, etc. we have many knowledgeable and caring members on this board. I am not familiar with TACE but, hopefully, others will respond to you.
i wish your sister-in-law all the best.
Wow, Kathy, your attitude is awe-inspiring. I have to think that kind of positivity will carry you a long way. I hope that you and your family have a wonderful holiday.
I was also happy to read of Steve’s second anniversary of surviving with CC. His success is remarkable and so very encouraging to others. Thanks so much for posting. I look forward to reading more of Steve’s blog entries, as well as many more anniversary postings!
Hi and welcome to our discussion group. We have many caring and knowledgeable members that are happy to provide information, share their experiences, etc. also, the search function can be very useful in finding threads on topics of interest.
thank you for posting your mom’s update. Of course I was sorry to read of recurrence, but I am hopeful that the new treatment plan will allow your mom many more years of good quality of life. As you point out, treatments have changed over the last few years. We have many members whose CC is successfully managed as a chronic condition, and I hope that will continue to apply for your mom.
wishing her successful treatment and quick recovery so that she can enjoy Christmas with her family.
I was so very sorry to read that Julie has passed. Iowa girl was a big contributor to this board, offering encouragement and good advice to many of us. Despite her medical issues, she remained positive and hopeful. I will miss her contributions to our ongoing dialog.
That’s awesome news,Fred. Congratulations to you and thanks for posting!
I am so very sorry for your loss. May memories of happier times with your mom comfort you during this difficult time.
I’m sorry your husband has this diagnosis, but glad you found us. Here you can find information on latest treatments, medical providers with expertise in CC, and many other topics.
I’m sorry to hear that you’re feeling under the weather. Hope to read soon that the TACE did it’s job!