Marion,

The match to find the living donor took quite some time. This was certainly the most frustrating part for us. Due to privacy issues for the potential donors, we were left in the dark about the process. And yet the potential donors looked to me to explain the process to them. All potential donors must be relatives or close friends. The clinic denied some keen donors for reasons we never understood, but perhaps they wanted to make sure the individuals really cared about my husband and wouldn't back out at the last minute. At times it felt cryptic and glacially slow. The clinic would only test one potential donor at a time. Then we would find out that the donor was not a match and weeks would go by until we heard another one was being considered. It was torturous to think that the cancer could be regrowing. I was not considered as a match, and I felt helpless to watch it all unfold while my husband went through 14 ERCPs and numerous stent changes. He grew weaker and weaker every day.

When John received the right lobe of the donor's liver, it grew to normal size in 3-4 weeks. For the donor, his remaining lobe regrew to the full size of his former organ in the same amount of time. For several months, however, the donor suffered from some digestion issues, and had to take several different medications to sort it out. Now, he is back to his pre-surgery health, but it took a toll on him--both physically and mentally. It is difficult to fully express our gratitude to the donor, when he so selflessly sacrificed himself for my husband. He is truly our hero.

I have spoken to other donors during our visits to the clinic. Others seem to have tolerated the surgery better. Certainly a deceased donor provides fewer complications, but for cc patients the meld score rarely matches the true need to get those cancerous ducts out of there.

The biggest concern for my husband was post-surgery complications. He did get an infection in the fourth week that needed high doses of antibiotics. That set back his recovery a few weeks. But when that cleared, he felt terrific. After a year of being sick, he felt healthy for the first time. The pain from the surgery was nothing compared to the pain caused by the radiation and the earlier pancreatitis that occurred during his first ERCP.

I hope that answers your questions.

Cheers,

Kim

My husband received a living donor liver transplant at the Mayo Clinic. Last May he celebrated the fourth anniversary, and he is cancer free. He had PSC for 19 years, knowing that he would someday need a liver transplant. When his liver function took a turn for the worse, we assumed it was the PSC. The PSC was causing problems, but the main culprit was cholangiocarcinoma.
He went through the Mayo Protocol under the guidance of Dr. Gregory Gores, which included chemo, external radiation and internal radiation.
The hunt was on for a living donor, since the PSC wasn't far enough along to garner a deceased liver. He was on the UNOS list, but the cancer would return before he got a liver. The docs figured he had about 150 days maximum from the cancer treatment to the transplant. A good match was found on day 180. We were worried it had taken too long and the cancer had spread. The day before the transplant was scheduled, my husband went through a staging surgery in which the surgeon opened him up to make sure the cancer hadn't spread outside the bile ducts. If it had, the transplant would be off. Waiting for the results of that surgery was the longest day of my life.
My prayers were answered when the surgeon returned to the waiting room to let me know the cancer had stayed put. The transplant was a go. The next day, my husband received a partial liver that regrew in about four weeks. He was back to his normal activities, including running a ski area, surfing, cycling and golfing within a few months.
Since then, he is doing great. The PSC has returned, but the docs assure us the chances of another transplant are small. The docs keep a close eye on him, and the cancer has not returned.
When my husband was diagnosed, I found this forum and read every line, searching for hope amidst the stories. Unfortunately, these stories are all too rare. But I did find tremendous hope and love here, knowing that even in our darkest moments, the best in human nature endures. I also wrote a book about our experience, called The Next 15 Minutes: http://www.amazon.com/The-Next-15-Minut … 1933016116.
I hope that our story can provide a glimmer of hope to others, knowing that doctors and surgeons are working to find a cure.

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(5 replies, posted in Introductions!)

Anne,
Welcome. I agree that you should give Medicare a call and look for a cancer center that offers coverage. I wish you the best of luck!

Lisa,
I will pray for you dad. Now is the time for strength and the support of friends and family. When you think you cannot go on, just slow down and make it one minute at a time. Others will gather even closer now to help you and your family. Allow them to do so. I wish you all the best, and will check back often to follow your progress.
Best,
Kim

Sue,
I'm thrilled for you. Congratulations on your gift. This is truly a group of powerful healing. When my husband was sick I scoured these posts, afraid of what I would find, but unable to put it aside. I longed for good news, some shred of hope that I could apply to our dilemma. Too often, far too often, the news was not good, and I lost hope at times. I wish I could have read your news during these dark moments. Three years ago, my husband received a liver transplant and a complete resection at the Mayo Clinic. He's healthy and strong and his latest blood tests are clear. Cliched as it might sound, we both appreciate the moments now. I try not to let a single day go by that I don't give thanks for this wonderful gift. I wish you all the best in the future as you continue on your fight to beat this and to live a full and healthy life.

Cathy,
I'm so thrilled to hear of your progress.  Yes, my husband also got CMV (even though his blood work showed he had the antibodies for it).  He was on the right track, they sent us home to Seattle and boom! he felt sick again.  But the Mayo got him on the right antiviral meds and he recovered quickly.  Aren't doctors amazing? John's hepatic vein was damaged in radiation, but during the surgery they gave him a new one (from a cadaver).  We recently reached out to his surgeon, who said just knowing that John was doing well was thanks enough.  Good luck to you too Cathy.  All the best. 

Betsy,

I am not an expert, but I believe DIA stands for Digital Imaging Analysis and its a test used to detect cancers.  FISH stands for Fluorescence in-situ Hybridization and it looks for mutations in chromosomes.  I believe its the FISH test that is so cutting edge.  One of these tests (I'm not sure which one) was developed at Mayo and requires a special machine.  At the time, I recall John's doc saying Mayo was one of the few hospitals to have such a machine.  So much was going on then, that I didn't ask more questions.  I hope this helps.  All the best to you.

Kim

Two and half years ago, my husband, John, received a liver transplant from the Mayo Clinic.  He had been diagnosed with cc the previous year, but the doctors said they "caught it early", and were therefore able to go through the transplant protocol.  His doctor, Dr. Gregory Gores, and surgeon, Dr. Julie Heimbach, saved his life.  He is now cancer-free and living a strong, vigorous, normal life. 

John had PSC and UC for twenty years.  These factors most likely caused the cc, which first showed up as a Klatskin tumor, blocking the bile ducts.  Luckily, the Mayo treated him with an ERCP, during which they did "brushings", the FISH test and the DIA test.  From these three tests, they found "suspicious cells", and called it cholangiocarcinoma.  He also got pancreatitis from this first procedure, which subsequently developed a staph infection and almost killed him. 

After two months of IV antibiotics, they were able to start the cc transplant protocol -- external beam radiation along with Xeloda and internal radiation.  Meanwhile, the team started searching for a suitable live donor, since the wait for a deceased donor would give the cancer time to spread. 

Up until the staging surgery (the day before the scheduled transplant), the doctors were never really sure the cancer had stayed inside the bile ducts.  If it spread, he would no longer be a candidate for transplant.  But, they determined it hadn't spread, he received the transplant the next day, and the rest is history, as they say. 

I have written a memoir about our experience, to be published sometime next year.  Check out my blog http://www.kimkircher.com for more information. 

I truly want to spread the message that with early detection, this cancer can be beaten.  John has also participated in a study at Mayo to help determine the contributing factors to this disease. 

As I understand it, transplantation is the only "cure" for this disease, as long as they know they "get it all out".  With transplantation, they completely remove not only the liver but all the bile ducts, and often part of the pancreas as well, in order to remove all the cancer cells. 

Ask your doctor if you are a candidate for transplantation.  Mayo Clinic was the first hospital to offer transplants for cancer patients, but I hear that other hospitals are following suit. 

All the best to anyone battling this disease.

Two years ago my husband, John, received the liver transplant that saved his life.  During the treachorous year following his diagnosis, I mined our past spent in the ski industry and other adventures for lessons I could apply to our current dilemma.  Today John is living a vigorous, adventurous life.  This blog is dedicated to how we learned to live through the hardest year of our lives:  just fifteen minutes at a time. 

http://www.kimkircher.com

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(6 replies, posted in Introductions!)

Holly,
All the best to you and your family.  Cancer is truly an awful villian, is it not?  I am sorry that your family has more than its fair share.  But like others have written here, this site is a place of refuge and, most importantly, information.  Arm yourself with it.

Yes, keep focussing on the positive.  Clogged stents are a pain in the neck, but the CT scan is the real diagnostic.  Keep your eyes on that.  All the best!

Kim

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(17 replies, posted in Introductions!)

Roni,
Welcome to the forum.  Let me just add to the hope already present here.  This is a nasty diagnosis, yes, but take a look around here and you will find many success stories.  You will also find others living with strength and integrity. My prayers go out to you and your father. 
Regards,
Kim Kircher

Andrea,
Good news indeed.  My fingers are crossed that all goes well with the Chemo and the bili stays down.  You also mentioned the current stent behaving.  Yes, that's always a toughie.  My hubbie had 12 ERCPs in as many months.  The first one caused pancreatitis, which was a real problem.  In the end, it was all for the good.  Those stents are painful and can be awful, but it kept him alive long enough for the treatment to work.  Which, it did. 

Regards,

Kim Kircher

That's wonderful.  This is certainly a topic that needs all the light it can get.

Cheers!

Raye,
So glad to hear about your success.  My husband, John, is also two years post transplant.  He also had his at the Mayo Clinic.  I have written a memoir about the experience and keep up with it on my blog at www.kimkircher.com.  Would love to hear more about your success.

Regards,
Kim Kircher

I wrote about this sad news on my blog, www.kimkircher.com.  My heart is heavy for the Arnold family.  I truly hope that this news does not hamper the life saving work in living donor transplantation.

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(9 replies, posted in Good News / What's Working)

Wonderful, wonderful news.

We just celebrated my husband's 2nd anniversary post-transplant, and he's still cancer free.  He was diagnosed with cc in 2007, had a live donor transplant at the Mayo Clinic (after radiation and chemo) in 2008, and now is living a full, happy life.  I wrote a memoir about our experience, called THE NEXT FIFTEEN MINUTES, and have started a blog.  Check it out at www.kimkircher.com.

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(10 replies, posted in Good News / What's Working)

Awesome news Gerry.  Congratulations. 

Kim Kircher

Thanks to all for the well wishes!  Yes, Gene posted a link to the story in the paper about my husband.  We are in the skiing business, and he has a bit of a following.  I am currently writing a memoir about our experience, tentativey titled, THE NEXT FIFTEEN MINUTES, in which I draw upon our lives as skiers and adventurers in order to get through his grim diagnosis.  Like any difficult situation, sometimes the only way through is in short increments--for us it was often only fifteen minutes at a time.  The future is certainly bright.  Next week, we are hosting the Olympic Games at Cypress Mountain, one of the ski areas my husband manages.  Dreams do come true!

Nearly three years ago, my husband was told he had bile duct cancer.  After twenty years with PSC, the inflammation had finally wreaked havoc on his liver.  I had thought the diagnosis was a death knell.  Fortunately, he was treated at the Mayo Clinic in Rochester by Dr. Gregory Gores.  Gores is a miracle worker, and those of you who haven't heard of him should Google him right now.  Go ahead, I'll wait.

Still with me?  Good.  The Mayo Clinic is one of the few clinics that will do a transplant on someone already diagnosed with cancer.  Just because your doctor says he or she can only offer palliative care, that's not necessarily true.  Check out the Mayo Clinic first.  If the cancer has spread outside the bile ducts, then the treatment is still only palliative, even there.  But if you have caught it early, then go to Mayo.  They saved my husband's life.  He was given radiation (internal and external), chemo and had a living donor liver transplant.  Today he is stronger than ever.  A few months ago, we returned from a month long trek in the Himalayas!  There can be life after cc.  My husband is living proof.

Gene,

Thank you for the encouraging words.  While we wait for the living donor process, John and I are able to work at the ski area.  We are in the midst of a great holiday season, with fresh snow every night.  I am on the ski patrol and have been doing avalanche control nearly every day.  Nothing like explosives and powder to keep your mind focused on the moment.

We can't wait to get on the other side of this ordeal, when every day John is getting stronger and healthier.

Sincerely,

Kim

Dianne,

I sincerely hope your husband was home for Christmas.  My husband and I are in the ski business.  He manages ski areas on the West Coast.  We live near Seattle, and both work at Crystal Mountain Ski Area.  The holidays are a busy time for us with work and have always been an extremely important part of our family life.  John has two children from a previous marriage.   Thankfully, they are with their mom during this time.  My heart goes out to you in your struggle to be both a mommy and a wife.  We have decided to get rid of our one year old labrador retriever simply because I can't take care of the dog and my husband.  I can only imagine how it must be for you. 

John is 49 years old.  The surgeon, Dr. Rosen at Mayo, feels that a living donor would be the best bet for John.  To await a deceased donor would be another 9 months or so.  The surgeon thinks that would give the cancer time to spread.  Several of our family members and friends are being considered as a living donor candidate.  I pray that the team can find a suitable donor quickly before it spreads.

Will your husband be undergoing brachytherapy?  John went through that and it was not as bad as the chemo and radiation.  John had twice daily radiation for three weeks and an infusion of 5 F-U.  The first two weeks were not too bad, but the last week was really hard.  The hardest part came afterward, when we expected him to get better.  Instead, he got worse before he got better.  It took 4 weeks until he felt well enough to go to work.  Before that he didn't have enough energy to eat, and spent most of the time on the couch or in bed. 

The brachytheraphy was essentially just an ERCP with a stay in the hospital afterward.  I was only allowed to be in the room for one hour within the 24 hour period in which he had the internal radiation inside him.  For that treatment, there wouldn't be anything for you to do there, so you should stay home with the kids. 

I appreciate your spirit and hope.  I am trying to maintain hope for the future as well as live in the moment and find joy today.  Perhaps we will run in to eachother at Mayo sometime soon. 

God bless you,

Kim

Last weekend was the longest three days of my life.  My husband had an EUS on Friday to find out if the cancer had spread to his lymph nodes.  We knew the results wouldn't be in until Monday, but I jumped each time the phone rang.  Finally, at 6 pm on Monday night, the doctor  called to tell us that the cancer HAD NOT SPREAD and he is still on track for a liver transplant.  Receiving that news was the happiest moment of my life.  Happier even than the day we got married.  How can a disease as terrible as this contribute to such happiness? 

John is also a candidate for a living donor, as the wait for a deceased donor would be too long.  I have started the process of being a potential donor.  I am hoping that I get the chance to do it.  John also has other potential donors, and the doctors will choose the best candidate.  These are the two things I have been praying for, and they have come to fruition.  I am a grateful woman.

Kim

Colleen,

I understand your burden.  My husband has left the research up to me.  So much of what I read is too scary to share with him.  I have tried to put myself in his shoes.   How would it feel to have to say, "I have cancer"?  It is hard enough to utter the words "my husband has cancer."  I, too, admire my husband's strength and his resolve to fight this disease. 

It is my job to help him do that.  And yours, too, is to help Fred fight.  We do that in the best way we know how, muddling through the dark hours and following the path we know to be right.   Keep it up girl. 

Sincerely,

Kim

Thank you all so much for your responses.  My husband, John, goes in for an EUS on Friday.  I am praying they will find that the cancer is localized.  The doctors have seemed hopeful, and now the day will finally come when we will know for sure.  It has already been a long road with John recovering from prancreatitis and the subsequent staph infection, which the doctors later told him could have easily been catastrophic.   John is a very fit 49 year old, who has always been a strong athlete.  This has helped him so far.  He has already lost 30 pounds (he has never had any extra weight to lose).  His appetite is unpredictable.  Does anyone have any suggestions on diet?  Do some foods work better than others?  Are there foods to avoid?  He is trying to put weight on, but he gets full after only a few bites of food.  He tries to eat more small meals.  I make him smoothies full of good, healthy supplements.  Is anyone trying milk thistle?  How about probiotics?  I add medium chain trycligerides b/c I hear it is easier for the liver to digest these fats.  Any thoughts?

kim