Tagged: Our story ...
February 17, 2017 at 12:45 am #83980mellydParticipant
I’ve spent a fair amount of time on the website but have not posted on the discussion board. I just wanted to introduce myself – my name is Melanie and I was diagnosed in April 2016. Initially I was a candidate for a liver transplant and was put on the Mayo protocol, however before transplant could occur they found the cancer spread. Fortunately my last two scans have come back fairly clear so I am not in need of treatment at this time. I have to go for scans every 2 months and find that extremely nerve racking. I look forward to the support this group can provide as I continue on my journey.February 3, 2017 at 6:54 pm #83978mattreidyParticipant
Thinking of you while at the 2017 Annual Conference this year Chuck. Your caring, help, and knowledge captured in this message board continues to be critically important and we miss you!January 28, 2017 at 4:56 am #83977positivityParticipant
Thanks for sharing the research!January 27, 2017 at 10:46 pm #83976
This just happened to come across my desk. It relates to the inflammatory process in pancreatic cancer:
https://www.pennmedicine.org/news/news-releases/2017/january/penn-researchers-help-unravel-mysteries-of-pancreatic-cancers-resistance-to-standard-therapiesJanuary 27, 2017 at 10:21 pm #83975
positivity….absolutely, there is a direct link to inflammation and development of this cancer.
We know for sure that patients with PSC (primary sclerosing cholangitis) at a high risk of contracting cholangiocarcinoma.
Here are few links relating the inflammatory process to contributing to CCA.
MarionJanuary 27, 2017 at 5:51 pm #83974
Dear Positivity, Some of that we know is from a parasite called liver flukes found in a fish (can’t remember the name) but if you Google liver flukes it will give the name of the fish. My husband got CC at 73 and I just know it was that parasite from when he served in Korea. It adheres to the bile ducts for 30 – 45 years and when it leaves it leaves behind CC. It cannot be detected during those years until after it leaves and it is truly a monster far beyond the size of the parasite! The big problem is that this fish is Located in Asia and who knows if it has reached our shores. We do have a lot of patients on the Coasts here. I have also read several times that our Inspection of Fish that come through our Coasts are not always inspected properly. Here is an interesting article from the NIHL https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088844/January 27, 2017 at 5:18 pm #83973positivityParticipant
My mom got this rare condition unexpectedly also, as many people have stated. Even though this is my opinion, I don’t think it is unexpectedly and most likely developed over a few years of inflammation build up in the GI region. Does anyone agree or have experience with some sort of high inflammation which was a precursor to the bile duct cancer?January 18, 2017 at 7:22 pm #83972
Dear Bev, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your Mother and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may be useful in helping you get through this first leg of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
I hope you can get a consult at MD Anderson. As for trials not sure for your Mother due to her age but I am sure someone will check in here with an answer.
Please do keep us updated on your Mother’s progress as we truly care.January 18, 2017 at 6:42 pm #83971bgomezParticipant
My name is Beverly, and I writing on behalf of my 76 year old mother, Edna. My mom was diagnosed with Cholangiocarcinoma when she was living in Hawaii. They treated it with chemo and radiation and she had a bad response to the chemo. For a while the cancer seemed to actually be a little smaller but most recently it has grown larger and there are spots in the peritoneum. She is now receiving care at the Stanford cancer center. However, they are recommending either chemo or hospice. My mom is still a vital woman and we don’t want to give up just yet. I have contacted someone at MD Anderson and I am hoping that she will be a candidate for immunotherapy. I have read that this cancer is very common in Asia. Does anyone know anything about any international clinics that treat this type of cancer? Are there any ongoing trials that she might be able to get into? It is really interesting to read about this disease in veterans. Living in Hawaii, raw fish was a common dish and my mom spent time in Japan as well – just wondering how this all came about.
BevDecember 12, 2016 at 10:03 pm #83907formybrotherjedMember
My 33 year old brother in Western Australia has just been diagnosed with bike duct cancer. Have been told it’s incurable (can’t be surgically removed)
He had terrible jaundice and after two months of false diagnoses we were told The horrible news.
He starts chemo next Tuesday and my family and I would love to hear any advice or similar experiences or positive outcomes from this rare disease.
Thanks for reading.November 30, 2016 at 10:42 pm #83910
toewalker…thanks for responding. My question is: has the biopsied tissue been tested for molecular alterations? In other words, has your DNA been tested? Reason for my asking is the following: you may want to pursue a second line treatment in the future and for this you would want to know what targeted drug may be available in a clinical trial.
MarionNovember 30, 2016 at 8:33 pm #83911towalkerMember
Hi Marion, Thank you for your welcome! To answer your question, I had a liver biopsy from which the Cholangiocarcinoma was diagnosed. I hope that answers your question. Over the last 6 months I have lost a good bit of weight and it was stomach issues that took me to the Dr., from which an ultrasound to inspect the gallbladder also showed the liver lesions. Then MRI, gastric scope, colonoscopy, and finally liver biopsy. Whew!! And now chemo.November 29, 2016 at 10:28 pm #83913
towalker…..(love your screen name) I too would like to welcome you to our site and like you to know that we are happy you found us.
I wonder, has there been a biopsy, which has been analyzed for molecular alterations?
MarionNovember 29, 2016 at 7:49 pm #83914
Dear Olivia, welcome to our remarkable family and the best place to be for CC support. More often than not chemo is the first line of treatment for CC. Many have gone this route and on to successful surgery which weird as it sounds is the point all want to get to…we love the word surgery! Below is a site you may find helpful and please keep us posted on your progress. When you feel up to it we would love to hear some more about Olivia.November 29, 2016 at 7:06 pm #83912towalkerMember
Hello all, I have been just diagnosed with cholangiocarcinoma with numerous liver masses on both lobes. I see an Oncologist this week to discuss chemo treatment. This after having my case presented to a liver panel at Virginia Piper Cancer Institute. Tha panel’s feedback was to start chemotherapy as surgery is not viable with the number of spots/masses on my liver. I feel such relief to be able to participate with you all in this journey. Thank you, Olivia
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