My dad has cholangiocarcinoma
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Mine has also spread to the lining of the stomach walls and I can’t have any surgery. Radiation took care of the liver tumor. I am on Gemzar and Oxalyplatin. I hope you find something new for both of us.
Hi Marianne,
I too am sorry to hear this news. Have you spoken with your dads doctors about other treatments such as chemo, radiation or PDT? I know that other will be along soon with some suggestions.
My best wishes to you and your dad,
Gavin
Marianne…I am sorry to hear about the metastases something, quite common with this disease. What did the physicians recommend at the Mayo Clinic?
Best wishes,
MarionJust found out this morning that it has metastasized to the lining of his stomach walls. He is not eligible for the transplant protocol.
WHAT NOW?! Does anyone know of something that can be done now?
Hello Marianne, Your story is so similar to mine! My Dad is 78, was diagnosed in December, told he was in operable, and then we found THE man for us. My Dad’s surgery to remove the tumor was last week, and successful! What part of Ca are you in? We are in San Diego. Look under my nickname to read about my Dad.
Best of luck to your Dad and family. Please keep us posted!Janet
mlepp0416 wrote:Marianne:I’m a bit amazed that your dad’s doctors feel a liver transplant would be an option but heck go for it! All Tom’s doctors said that they don’t transplant liver cancer as a general rule because liver’s are hard to come by and most often liver cancer returns even to a new liver. (I may have to do a lot more research on this!)
But, given Tom’s other issues, he would not likely be a candiate anyway as he has other underlying health issues such as diabetes, PAD and Coranary Artery disease, and has had a stroke and heart attack. (all that rules him out I feel)
Keep us posted on what your dad finds out at Mayo!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Margaret,
That’s great that your husband’s billirubin is down. I hope he makes a full recovery.
You’re right that liver transplants are not standard procedure for inoperatable bile duct cancer. They stopped doing transplants for this a while back because it became clear that the cancer always comes back and attacks the new liver.
This is a little different though because it’s neoadjuvant therapy (chemoradiation) followed by a liver transplant and it’s only for Hilar Cholangiocarcinoma (Klatskin tumors). It also cannot have began metastasizing yet otherwise it won’t work. The patient does have to be healthy otherwise to qualifiy for the transplant. It’s still in clinical trials. Here is the website for the current clinical trials going on in St. Louis Missouri under Dr. Chapman: http://www.clinicaltrials.gov use identifier# NCT00301379. But Mayo Clinics also do this same protocol. It was actually developed by the team at Mayoclinic Rochester MN under Dr. Gregory Gores and Dr. Charles Rosen. They have been having a 72% success rate. But keep in mind that 72% rate is the 5 year survivial rate at 5 years after transplant. Keep in mind also that some people do not qualify for transplant if it begins metastasizing prior to transplant. So that 72% is assuming the patient stays qualified up to transplant time.
I really hope that your husband recovers and I am sorry you are going through this. I wish nobody had to deal with this. It is horrible.
WOW! I didn’t expect so many replies so soon. This website really is a great support for this. Thank you everyone. My parents just arrived last night in Rochester Minnesota. He started having tests this morning and will have tests through Tuesday (not on the weekend though). He will see Dr. Gores on Wednesday. That’s going to be a BIG day and we will most likely find out if he’s qualified for the neoadjuvant therapy followed by liver transplant. I will keep you all updated. Thanks for caring and taking the time to read my post.
Marianne:
I will echo what others have stated, welcome to the best CC web site on the internet. Like me, I’m certain that you did not want to join this site. Two years ago CC was not a word in my vocabulary.
My husband Tom was diagnosed in March 08, had a liver resection in June 08 and was told he was cancer free, no chemo, no radiation. We lived on through his very long recovery (bile leak and a drain tube for 7 1/2 months) We had a great spring, summer and fall of ’09.
Tom started turning yellow in Nov ’09. A CTscan revealed a new tumor in the middle of his remaining biliary tree. It involved the hepatic artery and it is inoperable. I know the shock that you are going through because we felt the same way. His original oncologist gave us NO HOPE whatsoever. He said that chemo and radiation would not work. We RAN for 2nd and 3rd opinoins.
Needless to say, after 28 radiation treatments, his bilirubin level which was up to 24.7 is now down to 8.1. Not normal yet but a lot closer than it was. His yellow color is almost gone (I kind of liked having big bird living in my house, tee hee)
I’m a bit amazed that your dad’s doctors feel a liver transplant would be an option but heck go for it! All Tom’s doctors said that they don’t transplant liver cancer as a general rule because liver’s are hard to come by and most often liver cancer returns even to a new liver. (I may have to do a lot more research on this!)
But, given Tom’s other issues, he would not likely be a candiate anyway as he has other underlying health issues such as diabetes, PAD and Coranary Artery disease, and has had a stroke and heart attack. (all that rules him out I feel)
Keep us posted on what your dad finds out at Mayo!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Marianne,
Welcome to the site, although I am sorry that you have to be here. I hope that you will come back often as you will get a load of support and help from us all.
Having read your post, I can so relate to what you are going through right now with your dad as I went through the same with my dad. He was diagnosed in the summer of 08 and like your dad, he was pretty healthy until the jaundice showed up. His CC was also deemed inoperable from diagnosis and I can still remember the day that me, mum and dad were told that it was inoperable and I felt the same as you do now.
We were all in shock like you are, dad especially and yes, it is so sad and hard to deal with right now. But once the shock wears off the fight begins. And from what you have said in your post, that is exactly what your dad is doing and it sounds to me like he has some excellent doctors fighting with him. You are also doing a great job right now for your dad in all the research that you are doing and I know how much all of your support will mean to him.
Please don’t give up hope and stay strong for your dad, he will need you there beside him right now. I will keep you and your dad in my thoughts and I wish you all my best wishes.
Gavin
Dearest Marianne, WELCOME to our Family and so sorry you had to come here. I would just like to say that your dad is going to one of the very top Hospitals and Doctors around for CC. Stay strong and don’t give up hope.
Please come here to ask, vent advise or just hang around. And please do keep us posted.Marianne,
Welcome to the site. I am sorry to hear your news and was in your exact shoes at one point last summer. We ended up at the mayo last July after being told by our local docs they could do nothing and to our surprise Dr. Gores accepted my 66 yr old mom into the protocol and she was transplanted last november with my brother as her live donor. Please do not give up hope. Mayo will re-do every test and there is still hope he can qualify. ( Yale read my mom’s tumor as 3cm and a week later the Mayo’s test showed only 1cm!!) We were told by others ( even DR. Lindor at Mayo who specialized in PSC) they would not transplant someone over age 60 and Gores still accepted her. I will keep your family in my thoughts.
Ashley Orefice – Niantic, CT
ajackson0@snet.netHello Marianne,
First of all can I welcome you to the most supportive, friendly, and helpful board for patients and carers alike affected by CC….
I read your introduction with tears streaming down my face, what a terribly worrying situation for you all to find yourself in.
You are clearly well informed and knowledgable and a fabulous support for your darling Dad.
Wishing your Dad luck for his appointment today, whatever the outcome this is going to be a difficult journey for you all.
Let us know how things pan out, keep yourself busy today….
Katie
Hello everyone,
My 62 year old father was diagnosed with bile duct cancer (cholangiocarcinoma) on Fri January 29, 2010. Back in July and August 2009, he had stomach pain and his PCP told him he had gastritis. Then one morning in October he woke up jaundiced. Him and my mom (51) went to the ER where he had various tests (ctscan, ultrasound, and MRI). They saw a blockage in his bile duct on the MRI and then did an ERCP to take a look. They put a stent in his bile duct and told him that he has PSC (Primary Sclerosing Cholangitis). An autoimmune disease causes scar tissue buildup over time and that scar tissue buildup can eventually block ducts. The doc said he didn’t see any cancer but that his CA19-9 tumor marker was elevated. They said that was not a very good indicator of cancer though since it can happen even with benign blockages. But that PSC eventually leads to liver failure, there is no cure for it, and that he needed to get on a liver transplant list. The stent worked, so with in a day his bilirubin was back to normal and he was not jaundiced anymore.
His CA19-9 continued to be elevated. They did tell him that PSC patients have a much higher risk of developing bile duct cancer. A month or so later, they did an ERCP with a spy glass and took brushings and did biopsies for cancer. Came back negative. They also did an EUS and to look outside the bile duct for cancer and that came back negative. Since his CA19-9 was still way out of wack (elevated), they were concerned that he had cancer but they couldn’t find it. Because since he had a stent in him and bile was flowing, there wasn’t any other blockages they could see that could be causing the high CA19-9.
The liver specialist really seemed to think he had bile duct cancer, but the GI doctor really thought he just had PSC so they were arguing about whether he should be put on the transplant list or not.
In the mean time his stents were getting dirty every 1.5 months or so and he had to keep going back in to get stent replacement. The first time it got dirty, they removed it hoping it would just stay open on its own, but it didn’t and he had to get another stent put in. Then when they did the ERCP with the spy glass, they took the stent out and did a balloon dilation to see if it would stay open but it didn’t. So he had to go get another stent placement.
Anyways, this whole time he has had a stomach ache off and on and once in a while he has chills. He always has to worry that his stent is getting infected.
In January 2010, he had an appointment with the world renowned UCLA liver transplant surgeon, Dr. Ronald Busuttil, in order to discuss possible liver transplant for his PSC (because even though his liver is still ok, with the constant stent placements, it becomes a quality of life issue and the only way to cure PSC is to get a liver transplant).
Anyways, a week leading up to his appointment with Dr. Busuttil, he had to have several tests at UCLA to qualify for a liver transplant. One of them was another CT Scan. When he went to the appointment, Dr. Busuttil and his team informed him that he had 3 tumors on his liver (near bile duct) but that they would not be sure if they were malignant or benign unless they did laproscopic surgery to get biopsies.
Anyways, my dad’s medical company told him that they can do the laproscopic surgery so they wanted to do it for UCLA. So he had an appointment with an oncological surgeon within a week to discuss how the surgery would be performed.
My mom, sister, my dad and I were all at the appointment. In pretty good spirits because were thought that it would most likely be benign. One of the first things the oncological surgeon said when he came into the room was “I am 99.9% sure what we’re dealing with here is in-operatable bile duct cancer”. Completely shocked us. I guess we were all concerned about that to begin with, but we had no idea we were going to hear that at this appointment.
It was so shocking, sad, and hopeless. We all cried together and my dad was just in shock. Keep in mind before all this, he was a very active young 62 year old who just got his first grandkid (my daughter who is only 20 months old) and was living life to the fullest (playing tennis, riding his harley, etc). His dad is still alive and they see eachother every day. My grandpa (his dad) owns the family business and is still working. Who would have thought we would be dealing with this with my dad and not someone older in the family. Complete shocker. My dad and I have always been extremely close. I call him everytime something happens in my life. He always wants to know all the details of happenings in my life. Such a wonderful dad.
Anyways, that weekend I got online and did a lot of research. I learned of these clinical trials that are being done for a certain type of cholangiocarcinoma. I learned this from a post by someone on this website. He was so nice and even talked to me on the phone about it. It’s Neoadjuvant therapy followed by a liver transplant for patients with inoperatable hilar cholangiocarcinoma. But the kicker is that it cannot have started to metastasize in order for this protocol to be done. The MayoClinic in Rochester, Minnestota does this protocol and for people that qualify all the way up to tranplant time, it has had a 72% cure rate at 5 years post transplant. Which is amazing! But there are a lot of reasons someone can get disqualified (such as if the tumor is too big, if it has started metastasizing, and general health of person). Also, you can’t have already had some other treatment to begin this treatment. You also should not have any exploratory surgery or laproscopic surgery to get biopsies because that can make it spread faster and be disqualified.
We live in California. My dad and mom are going to Rochester Mayoclinic in Minnesota to undergo testing and have an appointment to see if he qualifies for this new protocol. It’s Dr. Gregory Gores at Mayoclinic who is is going to see. They are leaving tomorrow morning. I am so sad to see them go, but this is his only chance. If he is not qualified, they will basically send him home with little hope. Please pray or keep him in your thoughts that he will be qualified. I am concerned because they said his tumors are on the large side and I know that can make you disqualified. Plus he is already stage III, but since we did not get a biopsy, we are not completely sure it’s state III.
That’s it in a nutshell. This is so hard for all of us and so incredibly sad. We are trying to be strong and have hope.
Thanks for reading my story. I will post updates as things happen.
Here is a recent picture of my dad.
Take care and best of luck to all of you,
Marianne
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