I was diagnosed with PSC in 2017. Had my first ERCP in Dec 2017. Had a great 2018 then started having PSC symptoms again around Christmas 2018. Long story short, had MRCP then ERCP in Jan 2019 and they found cholangiocarcinoma. Johns Hopkins is offering two options: Resection with radiation and chemo afterwards or radiation and chemo now and try to get a liver transplant. Of course if I could find a living donor, the transplant option seems like a better path.
Getting second opinion from Penn and Thomas Jefferson since they are a little closer to home and seem to have good program. Right now I am feeling good and living day to day but need to make a decision soon regarding what to do. Any thoughts/recommendations would be appreciated.
If you are eligible for a transplant go for it. it depends on the type of cholangiocarcinoma and how big it is- my wife has it and was only eligible for resection after chemo, not a transplant. Check out cholangiocarcinoma.org, and the cholangiocarcinoma warriors facebook page. The resection has about a 70% recurrence rate, although again different factors influence this. My wife’s recurred after 18 months post op.
Go to
Mayo Clinic in Minnesota, we live in Florida and we were advised to go to Mayo Minnesota, long long story short my husband was also diagnosed with cholangiocarcinoma and PSC he was sent to Mayo for a liver transplant long story short a marvelous Doctor after viewing an old ct scan saw a tumor on his liver that could be resected
a wonderful surgeon did the resection got all the cancer, more to story but we came back to florida we have an oncologist here who keeps an eye on my husband, he has never felt better!
At least get an appointment at Mayo Clinic in Minnesota it is an amazing hospital! Please consider goi g they specialize in this situation you are in!
Best of luck!
Linda and Peter
Ken,
I’d do everything you could to pursue the option for a transplant. If you go the first route, the cancer might not kill you but eventually PSC will. I’d really consider the second option so that you might get that life saving transplant. And who knows your MELD may be high enough at the right time that you get a donor liver. I do wish you and your family well as you consider these important decisions.
Hello Ken.
I have no advice myself, as I am new to having PSC. But I do know you are on the right board with great people giving you advice. I will be sending prayers your way …
Mark
Just want to say I wish you the best. My husband just passed away 8/20/18 from this ugly. Dr’s told us resection surgery was not an option that his only hope would be a transplant but infections set in and things did not go well.
My thoughts are with you and everyone fighting this disease my deepest wishes for better someday.
Kathy,
My deepest sympathies to you and your family in the loss of your dear husband. Thank you for all you did to provide him care and thanks for responding to Ken’s post. May the God of all comforts be with you.
Steven,
Liver-wise is excellent. Pouch-wise, dealing with pouchitis and have lost my appetite again-lost 5 pounds in a month. But this will get behind me, pun intended.
Finally back with an update. After getting several opinions, I ended up opting for the resection at Penn. It was done on March 11 and they were able to get clear margins. They took out bile duct, gall bladder and 15 lymph nodes, one of which tested positive. After about 6 weeks of recovery I had a CT scan which showed no sign of cancer and now I have just started chemo which is planned for the next 6 months (oral pills of capecitabine - 2 weeks on, 1 week off). All is going well so far but I have just started. Feeling great at the moment.
Ken,
Thanks for sharing the great news. I’m very glad to hear that you are cancer free now! I trust the days ahead will go better for you. Hopefully your PSC will not give you problems any time soon. I wish you the very best!