September 23, 2021 at 11:44 pm #101299bglassModerator
Welcome to our community. From what I have seen on our board, we have heard from patients with a Stage IV diagnosis who were responsive to treatment, and who survived much longer than the statistics would have suggested. I also know several long-term survivors through my involvement with the Cholangiocarcinoma Foundation.
Melinda Bachini, the Director of Advocacy at the Cholangiocarcinoma Foundation, is a Stage IV survivor who was diagnosed in 2009. Here is her story as posted on the Foundation website.
Lisa Craine is another volunteer for the Foundation who is a Stage IV survivor, diagnosed in 2010. Here is her story.
Our colleague Patty whom you mentioned survived seven years after a Stage IV diagnosis. Her blog (link is further down on this thread) is an inspiring read (for anyone who is interested) despite her fight with this cancer, and is helpful as she describes her experiences with quite a range of different treatments. She reminds me that it is the journey that is important.
I hope your husband continues to feel well. I hope our community here can be of support for you and your family. Please stay in touch.
Regards, MarySeptember 23, 2021 at 5:54 pm #email@example.comParticipant
I am also looking for survivor stories that are recent and not from 2011. My husband was diagnosed in July with stage 4, mets to lungs and lymph nodes. It feels like every step forward we take, we move back two steps. We went to Mayo last week, and go back there in November. He is to continue with chemo for now. But twice now he could not do it because of low WBC. We were told to talk about his wishes. Which is hard for me we have a 11, 13, 15 year old. I been crying most days. And have not been able to work because I would start to cry. I worked in a hospital working with patients. My husband has been so positive about it all. He does not read the stats or really anything about his cancer. He is not in any pain, and is working from home. I am tring hard to be hopeful. Trying to find survivors that are not Patty from 2011( unless she still around). Need some hopeful news.August 7, 2021 at 8:37 am #101219HannahaParticipant
Open-and-close surgery just meant that right after she was first diagnosed, the first doctor she consulted with thought he might be able to do a surgery to remove the tumor. On doing a laparoscopic exploration of her abdomen, he encountered more extensive cancer than he had anticipated (including several positive nodes in the region of the liver). So instead of progressing with the resection, he opted to just close her back up again (hence open-and-close). It was after this first effort at a surgery that she started her chemotherapy regimen and had a good response that allowed her a successful surgery some months later.August 5, 2021 at 12:11 pm #101209
Thank you Hannah for sharing your Mom’s story. That gives us hope. What does open-and-close surgery mean?August 4, 2021 at 5:18 pm #101204
Thanks for responding Mary. My 24 year old otherwise healthy daughter was just recently diagnosed. We did get a second opinion from a doctor that is connected to a major cancer center and on his recommendation, we are working on a third. We know her gene mutations from genomic testing and she had blood draws for genetic testing as well (those results pending). Melinda from CC foundation reached out to us after she saw my FB post on the CC immunotherapy and gene therapy page so I have her as a contact as well.
She started on Gem/Cis and was due for second dose on 8/2 but her WBC count was too low. I’m asking for growth factor to boost the WBC.
I posted this thread as I want to share success stories for people’s whose diagnosis are similar. I did find some via the FB page.
Thanks again for the response.August 4, 2021 at 3:56 pm #101202bglassModerator
Welcome to our community. Inoperable Stage IV cholangiocarcinoma is a tough diagnosis, but we have had members of our community who survived quite a long time after diagnosis.
Here is one example: http://pattysjourneyoffaith.blogspot.com/2011/04/
Experience with this cancer varies a lot from patient to patient. My impression is that common threads for our patients with longer survivals include being treated by a doctor with a lot of experience with our rare cancer, being treated at a major cancer center, and being in otherwise good health when the cancer is first diagnosed. Today there are many more treatment options than even just a few years ago, so doctors have more tools to work with even for more advanced cases.
There is a lot of good information on the Cholangiocarcinoma Foundation website for patients and caregivers. Please send any questions our way. If this is a recent diagnosis, there are a lot of questions to ask of your medical providers about treatment options and what to expect with this diagnosis.
Take care, regards, MaryAugust 4, 2021 at 2:07 pm #101201HannahaParticipant
Hi there. I’m so sorry to hear that you or someone close to you has received this diagnosis. It’s horrifying.
Unfortunately, different hospitals tend to classify ICC in ways that are not always easily cross-comparable, in spite of the best effort of US and international bodies to try to institute a single staging system. That having been said, my mother was at one point staged as inoperable, stage IV “A” (meaning she had local but not distant metastases), and told she was not eligible for surgery. She was first diagnosed 3 years ago and given a very grim prognosis. She is very much alive and well today (she jogs more than I do, and has been on several camping trips this summer). At her last CT scan, she had been “stable” for more than a year, with just a couple of lymph nodes that we’re keeping an eye on and no other sign of cancer. She has, in the past 3 years, undergone 10 cycles of gem-cis, 2 surgeries (1 open-and-close, 1 that removed a large chunk of her liver and gallbladder), and more than a year of targeted therapy. I consider her a survivor. She is not cancer free (and she unfortunately probably never will be), but she has been lucky enough to be able to knock the beast back, and I have my fingers firmly crossed that we will continue to knock it back. When we got her diagnosis, we had no reason to hope that we’d be here today.
My recommendations: 1) make sure you get a second opinion from at least one doctor who specializes in CC and is based at a major cancer center; 2) get a genetic test done to see what kinds of actionable mutations your or your loved one’s cancer might have (there are details here on this site); 3) move forward with the chemotherapy treatment that the doctors offer, assuming that is the first treatment offered. The gem-cis combo is what got my mom from “inoperable” to “operable.” Even with distant mets, doctors sometimes decide it is worthwhile to attempt a liver resection after a positive response to the chemo.August 3, 2021 at 7:14 pm #101199
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