March 15, 2016 at 12:29 pm #83953
Dear Georgia, I found you! Welcome to our remarkable family and the best place to be for CC support. After all these years I am still not sure how things work across the world, but if you are questioning diagnosis and treatment I feel another opinion is in order. We believe heavily in 2nd and 3rd opinions. A GP and a heart specialist may not be well versed in CC and I am glad you are seeing a GI who may be able to do more.
We know when you first hear the diagnosis it feels like one has been hit with a baseball bat! But when some form of treatment begins the fright turns to fight. You did the right thing by reading as much as you can as knowledge is our best tool for fighting this monster. Please keep us posted and will be waiting to read what the GI says. You never know how strong you are until “strong” is the only choice you have!March 15, 2016 at 11:21 am #83952musichelpsMember
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!January 16, 2016 at 4:32 pm #83951
Perfect! Ashley, we so understand as we have all been where you are now. What you are going through is unfortunately normal! You feel like you have been hit in the stomach with a bat but I swear to you once a treatment is decided on your fright will turn to fight! Glad you have been doing a lot of reading as knowledge is really our best tool for fighting this rare monster. We are also big believers in 2nd, 3rd and even 4th opinions. Follow your gut it will not steer you wrong. I also want you to know we have other members that were in your husband’s category and they are doing so much better. I just get so upset with the amount of young people that come on here and I consider your hubby young, which helps. Also make sure that where ever you go for treatment, they and the ONC have experience in dealing with CC. We have made great strides with treatments and new things are coming around the corner all the time now. Wishing you both the very best and please keep us updated on his progress as we truly care. Be kind to yourself too, it is a long haul!
P.S. We have a SEARCH engine at the top of the page and you can type in some of the questions you have and if someone else has been there and done it most likely a post will appear on that subject. At least its a start until more members join in here. One last thing, BELIEVE. Never stop as we do have Miracles on our Board!January 16, 2016 at 3:23 pm #83950
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.January 16, 2016 at 3:06 pm #83949
Dear Ashley, welcome to our remarkable family and the best place to be for CC support. I cannot help you on the trial but I have a suggestion. I almost didn’t see your post and was wondering if you could kindly repost it under INTRODUCTIONS but not connected to a thread of other subjects. That is where everyone looks for newbies and I think you will then get more answers to your questions. Sometimes they just don’t view the older posts and hang on as we have the smartest people ever in our family. It sounds like it took a while for your husband’s DX and I am sorry for that! May I ask where he is being treated? When first diagnosed you will start out walking slowly and before you know it you will be running with the pack! Below is a site you may find helpful and please do keep us updated.January 16, 2016 at 2:05 pm #83948
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.January 15, 2016 at 10:35 pm #83947marionsModerator
Dear Ashley….welcome and thanks for joining in. Please know that all of us are here to help by sharing information known to us however; everything must be verified by a qualified healthcare professional.
Regarding the choice of gem/cis vs. clinical trial: the majority of research studies require prior failing of gem/cis or perhaps gemzar alone or gemzar in combination with another drug.
Has your husband received eligibility confirmation for the by you mentioned clinical research study? Would you please share with us the clinicaltrials.gov identification number?
MarionJanuary 15, 2016 at 6:34 pm #83946
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)
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.
AshleyOctober 7, 2015 at 4:02 pm #83945
Hello, Gwen and welcome to the best place to be for CC support and sorry you had to find us. May I ask what State you live in? Please keep in mind that we are huge believers in 2nd, 3rd and even 4th opinions and so glad you have had another opinion to validate the first. ‘At the top of the page is a SEARCH button and if you type in a word or 2 many past posts will appear on that subject.
I am going to ask a favor of you and I know it will get you more responses. Can you please copy and repost your first post as a NEW one under INTRODUCTIONS. You have latched on to a very long and older post and I am afraid your post will not be seen. Thank you.
Below is a site you may find helpful and please keep us updated on your progress!October 7, 2015 at 3:50 pm #83944gbbakerMember
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.August 11, 2015 at 10:35 am #83943middlesister1Moderator
Thank you for adding to the many who are thankful for all Chuck has contributed. After your post I took the time to reread this whole thread, and it is so spot on. The homepage has a wealth of knowledge for newly diagnosed, but this should be a must read as well.
CatherineAugust 10, 2015 at 6:36 pm #83942math-majorMember
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.June 2, 2015 at 11:22 am #83941genevieveParticipant
Sorry to hear about your diagnosis and that it took so long. Have you thought of going to one of the big hospitals in Sydney for another opinion? My husband had one of his three resections for intrahepatic cc at the Mater in North Sydney, with a surgeon who also works at RPA. RPA would I presume see more and be more familiar with cc treatment than where you live.
GenevieveJune 1, 2015 at 3:29 pm #83940
Welcome, David, to the best place to be for CC support but sorry you had to find us. Yes, we do have members from Australia along with a great Nurse, Janet. I hope she is still checking on us and sees your post. I am sending out an S.O.S. for any members in Australia to respond to your post.
Never apologize to us for anything you do on this site! We do not grade papers.
I cannot believe you have gone 28 months with no treatment. You might try our search engine at the top and type in Australia and a ton of posts will appear from members there.
Good for you by standing your ground at the hospital demanding to be seen. Wow.
Please share with us what treatments you have had and how you are doing now. You are not alone as we all care.June 1, 2015 at 3:08 pm #83939delpak-daveMember
Hello there, my name is David, I am not sure if I have posted in the right area of this site so if not can someone please let me know, I have been watching this site for a short time and I am learning more about my Cancer in those few days than any of my treating Doctors have told me, some of the treatments and terms I have seen on this site have never been mentioned to me and to be honest this has frightened me, not through any fault of this site but rather the thought that I may have wasted a load of time traveling the path that I have to date.
I am 51 years old, I was diagnosed on 14th March 2014 with Intrahepatic Cholangiocarcinoma (I am sorry if I have spelled this incorrectly), my diagnosis only came after my seeing a number of different Doctors over at least a period of 28 months of being told there was nothing wrong with me and I just knew that something just was not right and so one night I phoned emergency services and was taken by Ambulance to the local Hospital and basically refused to leave for 3 days.
While in Hospital I was able to watch a bit of TV and what I can only believe to be a sign, I watch 4 different Medical shows over those three days and from the symptoms that patients were describing on the TV shows I had them all but no pain other than one time that I could recall over that 28 months of seeing Doctors and when I told the Doctors of what I had watched I was told that they felt that I was suffering from Depression (and now I wish they had been correct) they then agreed to at least do a CT scan and then my journey began.
I will stop for the moment, because I have not had anyone to talk to about this and now I have found your site I fear that I may type out a novel and I do not want to sound like I am crying victim but I really could use as much information as possible as it is becoming very evident that not a lot of experience with this Cancer is available in my location yet I have no intention of just laying down and plan to fight this as much as possible.
I would love to know (if allowed) to know if there are any other members here in Australia? but not limited to that and would share with anyone anywhere.
I am sorry for the drawn out post, I do appreciate the time anyone may take reading my post.
My Kindest Regards:
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