Cholangiocarcinoma and PSC
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YEA! Jenny that is just fantastick news. I hope everything continues to run smoothly and only best wishes for you both!!! Tell him we are in awe of the 2 of you! The new dynamic duo!
Jenny, glad to hear Josh is doing well following a transplant. Keep the good news coming.
Good luck.
My husband received a liver transplant at Mayo (Jacksonville) on Feb. 24. I posted a thread with more details in the transplantation section.
He’s doing fantastic so far!
God bless,
JennyJenny….great to hear from you again with such good news. I am wondering whether you would be so kind and use our blog section to add the caring bridge link? This would assure our members continuous access to your journal. Due to the high volume of postings on our site threads have a tendency to get lost however, when posted in the blog section, it always is easy to find.
Thanks and tons of good wishes,
MarionI am a cc survivor!! I am also a 2 time liver transplant survivor. My story is much like yours. I was diagnosed in July 2008. I was told only hope was transplant. The Mayo Clinic and Barnes-Jewish Hospital were the only hospitals with this trial. Barnes is only 45 mins from our house another sign of Gods work. I did chemo and chemo pump while doing radiation and then oral chemo while waiting for transplant. I had at least 8 ERCPs while waiting. I also Had 2 fake liver calls (liver wasn’t good,a pretty common expierence). I was put on the list on Jan 29,2009 and was giving extra points for MELD score (very i mportant) for cancer!! I rec’d my first liver May 24,2009. There were no complications except a collasped lung and on the road to recovery quickly. On July 4, 2009 I started vomitting blood and was diagnosed with a rupurted hepatic artery do to radiation complications. I was given 36 hours to find a liver. Thanks to the power of prayer and the worlds greatest transplant team I am alive. I was in the hospital for 3 months. I had blood infection and back to ICU,took out all ports and lines. It has been a long road. I had to learn to walk again. My doctors call me there miracle. When I was first diagnosed I asked my dr. if i would see my daughter graduate college and he said I would I watched her graduate May 9 2010.I had other problems but I just remember July 4 2009 when they gave me the last rights twice. You will survive this I did. You are in our prayers- Cathy
Jenny,
It is good to hear from you. I’ve been following your CB site and glad to hear that things have been moving along for Josh. Sorry to hear about the complications – but glad they are only temporary.
The stent changes should be a piece of cake. I’ve had quite a few ERCP’s and stent changes in my time. A few times I’ve had minor cholangitis afterwards but a quick script for Cipro took care of them. I can understand your terror after Josh’s last experience but keep in mind that once the sphincter has been cut, it doesn’t need to be done again. His risk of bleeding for just a stent change is MUCH smaller and given his history they will probably take preventative measures with meds and could even do blood tests to measure clotting beforehand.
We are praying for you and hoping that chemo/radiation does its’ job and that the EUS and staging surgery come back looking good so he can move forward with a transplant. You are on a path for the very BEST possibility of a cure. I’m sure you’re aware of the rates, but we were told about 80-85% 5 year survival and very similar cure rates.
Thank you for the frequent CB updates. Please keep them coming.
Rick
It’s been awhile since I’ve had time to come back and give an update. My husband Josh began going through Mayo Jacksonville’s liver transplant evaluation protocol on July 19. He underwent most of the testing with few complications, with the exception of a major GI bleed where his hemoglobin got down to 4. The doctors said an older man would have gone into cardiac arrest. He currently holds the record for the fastest blood loss in 2010 at Mayo Jacksonville. Not exactly the kind of record you want your husband to hold!
The GI bleed was caused by an endoscopic sphincterotomy to insert bile duct stents during an ERCP. The good news is, despite the setback with the bleed, his bilirubin is down to 1.7 as of yesterday. And most of his liver numbers are close to normal. So the stents are definitely doing their job.
Josh is currently undergoing chemo and radiation (he’s on day 10 of 20). On Labor Day weekend, he had another setback when he was diagnosed with a blood infection on Friday and had to be hospitalized all weekend to receive IV antibiotics. The blood infection was most likely caused by the stents allowing gut bacteria to get up into the bile ducts. (Stents: the very definition of a blessing and a curse!) The doctors said Josh was classified as having sepsis, which is just as scary as the GI bleed. But luckily he responded well to the antibiotics and was released from the hospital on Sept. 6.
After he completes chemo and radiation, he is scheduled for an endoscopic ultrasound and another ERCP to replace the stents (I won’t lie
Jennej…..Good luck, be safe on your trip. Tons of positive thoughts are coming your way.
Best of all wishes,
MarionI just wanted to thank everyone for your well wishes and encouraging words. We are driving to Jacksonville tomorrow so I will try to update sometime in the next week.
Your positive thoughts and prayers mean a great deal to us. We are keeping all of you in our prayers too.
Take care,
JennyHi Jenny…..I don’t have much to add to what has already been said, but I also wanted to welcome you to our site. I am glad that you have found us.
Best wishes,
MarionHi Jenny,
Welcome to the site, but I am sorry that you had to find us all. I know what you mean about being in shock as I was like that for a bit when my dad was diagnosed. But that will wear off soon and then the fight back will begin for you both. I am glad to hear that Josh is determined to beat this and is in good spirits and that positive attitude will help with this.
Don’t worry about not posting too much, but we will all be here for you when you do come back with a ton of support for you and Josh, and you are not alone in this. Good luck next week and I hope it goes well.
Best wishes to you and Josh,
Gavin
Welcome, Jenny – even though I’m sorry you have to be here, I’m so glad you found us. GOOD LUCK!!!
Julia x
Hi Jenny,
Would just like to welcome you to the best support network on the net…
Here you will find plenty of knowledgable, friendly and suppoortive friends.
Wishing you and Josh the best for his appt next week.
Please come back and keep us informed,
Katie
Jenny,
So sorry about your news. My husband is 34 with PSC and CC as well. I really hope that they found it early!!!!!!!!!!! Best of luck to you!
BethJenny,
I saw your post on the Yahoo PSC site but didn’t have a chance to respond. I’m sorry to hear about your Josh’s news. It sounds like it has been a tough year and I’m hoping the best for you.
The Mayo Clinic is the best place to be, in my opinion. Especially since Josh has PSC and CCA and considering Mayo engineered the protocol for liver transplantation for cholangiocarcinoma. I assume this is why you are be referred to Mayo to see if this is an option for Josh. The great news is that if he qualifies for the protocol and makes it through, he has a great prognosis. You can check out the new section on this site called “liver transplantation” for a little bit more info and some contacts.
I also have PSC and cholanciocarcinoma. I was diagnosed last year and evaluated at Mayo in Rochester for the transplant protocol. I was accepted, but unfortunately my cancer progressed and was found to have spread when they did a staging surgery (part of the protocol). I am taking systemic chemotherapy now with some limited success but still remain hopeful. There are several others on this site who have completed the protocol and are now cancer free.
Best of luck to you and to Josh.
Rick
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