Introduction / Welcome

Dear Georgia,

I too, welcome you to these discussion boards but am sorry you are here. I feel the love you have for your mom, and I recognize the frustration of this stupid cancer. Please keep us updated on her progress and know we are here to support you and your mother in any way we can. Please take care.

Melinda

Hello and thank you so much for existing. For having the selfless idea of providing resources, information, countless hours of your time and loving compassion.
For the three or so days spent awaiting registration, I have read many pages of text.
My 78 year mother was diagnosed last Friday with ICC, intrahepatic cholangiocarcinoma, the rarest of the rare. Her heart specialist thinks it is inoperable, her GP told me to gather the family around and spend quality time with her. I, like most people I suppose that find themselves here, coped by reading and reading , between crying by myself and perfecting chicken stock and working and husband and kids and life. Tomorrow we see the surgeon, Simon Banting, head of GI surgery at St Vincent’s Private, Melbourne. Thanks very much to you all I am armed with questions.
I wanted to point out some of mums seeming differences in the many common symptoms I’ve been reading about:
Symptoms that got us to a doctor:
Lack of energy and appetite, two bouts of severe vomiting, running hot and cold, very little food for nearly three weeks. But from reading I think that the little ‘dots/brown rash’ that she discovered on her forehead around the hairline and then around the back of her head, 6ish months ago, were the first symtpoms. They were not itchy. They were not really noticeable. She went to skin specialist whom she described as useless and her GP put her on antibiotics. I feel this could be possibly significant for future, early diagnosis. I’ve read of people describing incredible itching though and my mum had no itchiness.
The other very fortunate thing is that she has no pain. From descriptions here she seems to fit both stage 2 and 4.
What she has:
She has 4/5 tumors around 12x9mm in the duct and one or two liver segments. I assume this is metastasized. She has not been jaundiced at all. She is otherwise in good health, has booked and paid for her trip to England in September to visit friends and study at Cambridge for a week. She has atrial fibrillation but it is controlled. She had a stroke 6 years ago and has mild aphasia. She is an athiest and has worked for the good of people her whole life.
I’ve read what I have written and i seem very matter of fact. I oscillate. I am screaming on the inside, why? No! How cruel! Just horribly unfair. I am not ready but I know I never will be. But my shock and grief is turning to reality. She is alive right now. Let’s sort this %#^% out best we can.
Just thank you for being here. And my heart goes to everyone who has braved this battle before me and who is currently in the nightmare. Thank you for sharing, it has helped me very much indeed.
And apologies because I am sure I have posted in the wrong place and I have no idea how to post in the right place…hoping someone may find me!

Hi Lainy – and thank you! I wondered if I had posted in the wrong place and I guess I did! I appreciate your help and ongoing support for so many members of this board. It’s an amazing outlet of compassion, information and support. Finding out you or a loved one has this rare cancer (now seeming not so rare to me…..) is utterly devastating. It has been hard getting the help we need, especially with a stage IV diagnosis…. We live in Charlotte, NC and have been to Levine Cancer Institute (where we saw a very dismal doctor who gave us NO hope); my husband is currently at Oncology Specialists in Charlotte; we’ve been to Duke University and sent his FoundationOne results to the dr as requested but no reply yet. Finally, we’re going to Emory University near Atlanta to try to get into this trial. If it doesn’t work out, we’ll be back on the chemo wagon with so many others. It feels like a risk no matter what you do, but I know it’s time to do SOMETHING as, you’re right, it’s been strange with the diagnosis. Lots of red tape to cross through for sure.

Hi Marion,
Hello again and thank you.

Yes, I completely understand that everyone here is sharing information per their own experiences and I didn’t mean to pose my question in a way that meant I was looking for medical advice.

I think it’s more of a personal question, kind of a “what would you do” question to anyone who wants to share.

To answer your question, we are actually going in a few days to be screened for final eligibility, but per an initial review of his medical records we were told that he is a candidate. We were told that even though the trial inclusion criteria says you must have failed prior conventional treatment, there has been a change to the protocol that wasn’t also changed in the information per this link: https://clinicaltrials.gov/ct2/show/NCT01752920?term=fgfr2&rank=4
Trial # is NCT01752920

They are doing scans in a couple of days and we’ll know if he has been accepted at that time. Then, if so, the trial could begin a week later.

I want to believe that this is not too good to be true.

Thank you.

hello everyone,
first I want to say thank you:
1) that this website exists
2) that an entire foundation for this terrible and rare cancer exists in the US
3) to everyone who posts with such valuable information

I have been digesting information for the last month and a half about this cancer.

I’m a newbie here to the boards and myhusband, who is 47 years old, has the unfortunate diagnosis of inoperable intrahepatic cholangiocarcinoma, stage 4B. he was diagnosed roughly one month ago and was due to start the standard chemo (gem/cis) Monday the 18th (so late simply due to the holidays and also due to our own shock/denial/indecision about next steps + 3rd and 4th opinions received).

however, we got word from a clinical trial just yesterday that my husband may be eligible even though he hasn’t started or tried any chemo yet. I understand that for some chemo works really well; for others, not so much.

my husband, Tom, has the FGFR2 gene mutation, or over-expressed FGFR2. It just so happens there is a clinical trial about 4 hours away from where we live that is studying an FGFR2 inhibitor drug – phase II trial. There is one CC patient who started out on the trial 22 months ago and is still alive today, still on the drug. this seems very promising to us and even though we’ve been told to go ahead and start chemotherapy, what IF Tom gets into this trial and could begin taking a drug that would definitely stop tumor growth and possibly support tumor angiogenesis? could we really be that lucky?

I don’t know and it’s a tough call to make (and I’ve seen here that a lot of people have had to make some tough decisions with this cancer).

I wanted to know if anyone has any experience with this gene mutation type, a tyrosine kinase inhibitor drug and/or chemotherapy in those with the FGFR2 over-expressed gene.

I’ve been trying to gather scientific data so that I can compare statistics for those who have done chemo and those who have undergone clinical trials and it’s been difficult so I thought I would throw this question out there:

if you were Tom, which would you choose? because they, at this time, cannot be taken at the same time:
1) standard 6 courses of chemotherapy (gemcitabine and cisplatin)
or
2) a tyrosine kinase inhibitor drug in escalating doses with NO chemotherapy?

I would greatly appreciate some responses and maybe someone can help us with this difficult decision or at least sway us in one direction or another. Honestly, we are just so scared and don’t know what to do at this time. Obviously no one wants to make the wrong choice for their loved one or even with their loved one. If it was just me alone, I would do the trial. That’s my personal feeling and preference but I wouldn’t be able to live with myself if it didn’t work for Tom.

Thank you,
Ashley

Hello, I am 53 year old wife and mom of 3 daughters, 13, 19 and 21 and I was recently diagnosed with Cholangiocarcinoma. I have tumor metastasis in my liver and I am told by both my first and second opinion dr’s that I am presently non-resectable. With all the imaging that I have had, there is still no positive site of the tumor in the bile ducts. By process of elimination and by virtue of the liver tumor biopsies, my diagnosis was formed. I have just completed two infusions of Gemzar and Cisplatin and tolerated them very well. As all of you are, I am desperately frightened but trying to be as positive and hopeful as possible. After 3 rounds of chemo (9 weeks), I will be re-imaged to see what’s next. I would love to hear about anyone else who has a similar treatment and situation.

Chuck you are unbelievable. That article was fantastic. I know you have helped many people. I’m so proud of you and love you very much. Every day we have with you is a blessing or as Aimee says a miracle.