April 11, 2013 at 12:45 pm #70736holly22aMember
Transplants are not the answer for ICC. The protocols are very strict and very clear and almost nobody with cholangiocarcinoma can qualify. It has to be small and hilar, I think. Besides, if you really research it, the anti-rejection drugs required after transplant often lead the cholangio to turn up elsewhere in the body, where the body’s own defenses had been fighting it before. I have been told this by both Dr. Kato and Dr. Facciutto, top CC surgeons and liver transplant surgeons in NYC. So it is a false hope for almost all of us to go chasing the dream of a transplant, at least for now.
On the other hand, a good response to chemo and you may qualify for liver resection surgery. It has happened many times, and this can greatly prolong your time and health over chemo alone. And even chemo, if well-tolerated, can buy a ton of time. We are all different, and as Lainy always says, we do not have an expiration date stamped on our feet! Good overall health is a tremendous asset in this fight.April 10, 2013 at 4:50 pm #70735marionsModerator
Dorien…correct, transplant is not possible at this point. You may consult with the University of Utah transplant team. http://healthcare.utah.edu/transplant/liver/
Also, you might want to consult with a radiation oncologist.
MarionApril 10, 2013 at 1:19 pm #70734thebompie4Member
thanks for your comments.
we have had 2 opinions– 2 drs, 2 diff hospitals.
they both recommended the exact same course of treatment.
we have heard (and read) that once it’s spread a transplant is never
an option since the cancer has already spread from the original spot.
is this not the case??
we have entertained the thought of sending records out of state but not
exactly sure how to do that…
anyone have a good recommendation?April 10, 2013 at 1:00 pm #70733jathy1125Spectator
Dear Dorien, Welcome and sorry you had to find us. I am a CC survivor with an amazing story to share. I am almost 4 years cancer free due to 2 liver transplants. I am alive because of God, 2 strangers and Dr. William Chapman. Please read my story at http://www.catherinedunnagan.com it is full of HOPE. I realize not everyone can quailfy for a transplant but I share my story because I can honor my donors and hopefully show there is HOPE when the odds are against you. Miracles due happen!
Lots of prayers and HOPE-CathyApril 10, 2013 at 4:21 am #70732wallsm1Spectator
Welcome to the site and sorry you had to find us. Please keep up us posted on how your husband does with chemo. Glad to hear he doesn’t have many side effects.
SusieApril 10, 2013 at 4:07 am #70731lainySpectator
Dear Dorien, welcome to our extraordinary family, you have found the best place to be. First I want to say what a beautiful Blog you have started and what a gorgeous couple you are. Then I want you to know we do have Miracles around here. We have had some Stage IV, no surgery patients and after a few courses of Gem/CIS chemo-sabi (love that one on your Blog) the Stage IV became operable! We are huge believers in 2nd and 3rd opinions and have many success stories because not all eyes see the same things and all minds work differently. Please think about it. You can even Fax Kyle’s records and tests to another ONC and they will usually come back with a reply. Kyle has a great attitude and that will certinly help in dealing with this crazy CC. If you can, try to read up as much as you can as knowledge is our most powerful tool for fighting CC. Also make sure that where ever you go for treatment that they have treated quite a few CC patients. Please keep us updated on Kyle’s progress. I love his name as I have a Grandson named Kyle.April 10, 2013 at 1:21 am #8216thebompie4Member
Hi there…. My name is Dorien (Door * E * N). My husband was diagnosed with this cancer (stage IV) in early March. (spread to lungs–possible lymph nodes–but PET scan was not 100% clear on lymph node spread) He has never been sick a day in life–quite literally–and went from thinking he had bronchitis or some crazy flu (he had a cough, fever, night sweats and weight loss for most of Feb.) to stage IV cancer in a few days time. After A LOT of freaking out by me (because he never gets sick) …we went from a physical to a CT scan to a liver biopsy in the space of 48 hours.
He has lots of tumors in his liver and he is not a candidate for surgery or anything really other than chemo (Gem/Cisplat.) combo to help improve quality of life/prolong his life.
We have 4 kids ages 9 to 19 and this has been quite the blow.
We are now 3 rounds into chemo w/o (really) any other side effects other than fatigue and my husband feels better than he has in a few months.
Mostly looking for a little support…. and to hear others stories.
We’ve had two opinions (we live in SLC with the Huntsman Cancer Institute) and BOTH Dr’s there and at IMC have been really great.
They say they’ve both seen “better odds” in healthy younger people–but insist that Kyle will make his “own numbers”.
I’ve started a blog I will post in the blog section if anyone wants to follow along.
That’s it for now. We keep plugging along. Some days are very hard and some days are actually good.
I also have to say that he is still working and living a pretty normal life and will choose that until he can’t. He’s a fighter and sees no reason to sit around “waiting to die” when he can live life for as long as he can!
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