cholangiocarcinoma

ianryan

Hi
I just got diagnosed with choangiocarcinoma. It was inoperable due to a lymph node metastasis, and the tumor had attached to the portal vein.
The options that I have are radiation and chemotherapy, which starts in three weeks.
If anyone has any information in this type of a cancer I would appreciate it.
Anne

markl

Hi Ann,
My wife has cholangio with mets. She is receiving chemo - Gemzar (gemcitabine) I.V. and Xeloda (5-fu) oral - two weeks on, one week off. Her cancer has responded to the chemo, tumor reduction has been 30%.

If you send an e-mail to me at mark_l_slaughter@yahoo.com - I will put you in touch with her (I'll give you our phone number, etc.)

Cholangio is rare but you are not alone - reach out.

Mark

dmeyer9

Hello Anne,
First I want to let you know how sorry I am that you are facing this. My thoughts/prayers are with you. My husband was just diagnosed on May 20th with stage IV cholangiocarcinoma. They found it because his gall bladder had become infected and they had to remove it. When they performed surgery, they found the cancer and said it was also inoperable. They are going to start him on Xeloda/capecitabine for two weeks with one week off and then for two weeks again. At the end of that time, they will then review the tumor to see if the capecitabine has had an effect on it. They also recommended gemcitabine, but can't use it yet because his bilirubin is at 4.6 and it has to be 1.5. They put in stents about a week and a half ago to try to reduce the bilirubin counts, and he is also taking actigal (ursodial) to make the bile less viscous. How is your treatment going?
Cherish and David

Faith22

Hi Anne,
My thoughts and prayers go out to you and your family. My Dad was recently diagnosed with cholangiocarcinoma (May 25, 2004). His tumor is about the size of a grapefruit. They have not officially staged his cancer yet, but I do know that the tumor has also attached to the portal vein and his lymph nodes are also inlarged. His tumor is also inoperable. He has a difficult time eating and has some good days and some bad days. We have REALLY had a difficult time finding a doctor to give him a second opinion. The oncologist where we live wants to treat the liver cancer as colon cancer (even though it did not start as colon cancer and he does not have colon cancer now). This may be the thing to do, but Dad still wants a second opinion. We finally have an appointment at the Medical College of Virginia (MCV) in Richmond, Virginia, on July 6th, for a second opinion regarding treatment. As we learn more, I will send any information to you. How are your treatments going? Do you have any information or advise? I will put you at the top of my prayer list. I know that this is difficult. Just wanted you to know that although this is a rare cancer you are not alone.

Faith22

markl said:

Hi Ann,
My wife has cholangio with mets. She is receiving chemo - Gemzar (gemcitabine) I.V. and Xeloda (5-fu) oral - two weeks on, one week off. Her cancer has responded to the chemo, tumor reduction has been 30%.

If you send an e-mail to me at mark_l_slaughter@yahoo.com - I will put you in touch with her (I'll give you our phone number, etc.)

Cholangio is rare but you are not alone - reach out.

Mark

Hi Markl,
I am glad to hear that your wife's cancer is responding to the chemo. My Dad was recently diagnosed with cholangiocarcinoma (May 25, 2004). He is just beginning the battle. He has an appointment for a second opinion in regards to treatment on July 6, 2004 at the Medical College of Virginia (MCV). We were beginning to feel alone due to the fact that cholangio is so rare - reading your e-mail - "you are not alone - reach out" has helped me realize that we are not alone. How is your wife doing? Do you have any advise for my Dad? My thoughts and prayers are with you and your family.

lilhill

My step-father was just diagnosed w/ Cholangiocarcinoma and is preparing to start radiation & chemo. Just wondering how your treatment is going. Thoughts & prayers are with you!

andreaC

markl said:

Hi Ann,
My wife has cholangio with mets. She is receiving chemo - Gemzar (gemcitabine) I.V. and Xeloda (5-fu) oral - two weeks on, one week off. Her cancer has responded to the chemo, tumor reduction has been 30%.

If you send an e-mail to me at mark_l_slaughter@yahoo.com - I will put you in touch with her (I'll give you our phone number, etc.)

Cholangio is rare but you are not alone - reach out.

Mark

My husband has had primary sclerosing colangitis for 6 years and has been healthy until about 6 weeks ago.He was having painfrom his gallbladder after many tests they took his gallbladder out on 6-23 and found metstatic cholangiocarcinoma.Were going to MT Sinai next thursday for a consult on treatment...I'd love to hear something positive right now..Andrea

Rubala

lilhill said:

My step-father was just diagnosed w/ Cholangiocarcinoma and is preparing to start radiation & chemo. Just wondering how your treatment is going. Thoughts & prayers are with you!

Hi Lil:

My mom was just diagnosed with cholangiocarinoma. She too is preparing to start both chemo and radiation treatment. She starts on 7/7. The are inserting a porta-cath in her chest for the chemo. The chemo will be attached to her with a fanny pack and will be administered slowly into her system everyday. Radiation will be everyday for 6 weeks. I am still shocked and very upset as is my dad and other siblings. I pray this works for your step-father and my mom.
Ruby

4myfather

It is with great sorrow that I find what we share in common is a bad cancer. My father was diagnosed with inoperable stage IV cholangiocarcinoma last week. It was an emotional rollercoaster for our entire family last week. But we are no longer upset and are ready to fight this thing.

Does anyone have any reports on chemos or alternative treatments that shows positive results?

They say that chemo and radiation doesn't work. Any experiences that prooves otherwise?

Anybody had experience with IPT? RobbinsEgg had a post on that earlier.

Anyone tried Haelan951? I ordered a small supply for my Dad to try out. I'll report on that. We also got some chinese herbal mix from this Dr. from China. I'll report on that as well.

I'm encouraged to know that we are not fighting this alone. I hope that by sharing information we can help ourselves. The doctors don't seem to have any clear answers for us.

thursdayfix

Hi there. I also have stage IV cholangiocarcinoma. I'm 41 years old and was diagnosed last September, shortly after having a baby. We are still devastated. But we're fighting. I have several tumors in my liver and it's spread to my abdomen, lymph nodes and lungs. The doctor said I have anywhere from 6 months to 3 or 4 years to live.

I've been on Gemzar and Xeloda since October but it's starting to fail so they are switching me to a clinical trial that includes some standard chemo along with an antiangiogenesis (sp?) drug. The chemo is Oxaliplatin, Lucovorin, 5fu and the new drug is called VegF Trap. Supposedly it traps the cells that feed the tumors and the tumors starve. I hope it works.

I've felt so alone and I can't tell you how much it meant to me to see this thread and know that I'm not alone. I would appreciate any email or posts from others with this condition. My email is thursdayfix@hotmail.com

marathon328

Hi, I have cholangiocarcinoma also along with Primary Scelerosing Cholangitis. I just completed radiation a few weeks ago and they have been trying to give me chemo, but I've only been able to take 1/2 doses and 1/2 the time they can't give it to me due to my low white cell and red blood counts. Hopefully your liver is in better shape then mine and you can better tolerate the chemo. I was turned down for a transplant for the PSC (only cure) due to the finding of cancer also in my lymph node just like you. Good luck to both of us. I'm considering stopping the chemo, because even if my cancer is cured (which is highly unlikely)my liver disease will kill me. I'm not giving up, but I want what time I have left to feel as good as possible.

AllisonBroox

marathon328 said:

Hi, I have cholangiocarcinoma also along with Primary Scelerosing Cholangitis. I just completed radiation a few weeks ago and they have been trying to give me chemo, but I've only been able to take 1/2 doses and 1/2 the time they can't give it to me due to my low white cell and red blood counts. Hopefully your liver is in better shape then mine and you can better tolerate the chemo. I was turned down for a transplant for the PSC (only cure) due to the finding of cancer also in my lymph node just like you. Good luck to both of us. I'm considering stopping the chemo, because even if my cancer is cured (which is highly unlikely)my liver disease will kill me. I'm not giving up, but I want what time I have left to feel as good as possible.

Hi I'm Allison. I'm 24 years old and was just diagnosed in June w/ cholangiocarcinoma. My tumor is a little bigger than a grapefruit inside the right half of my liver. Since my tumor is so big, my doctors at UCLA have told me that it's too big for surgery or radiation. I've been doing chemo since mid-June. I was on Gemsar and Cisplatin first. Unfortunately, there were no changes in the scans after 7 weeks w/ that combo. I'm now on a different type of chemo called Folfox 6 where I take the chemo home w/ me and have it administered through a port-a-cath for 46 hours. Right now I feel fine for the most part and the side effects from the chemo haven't been too bad. I know this is a serious disease though and that time really is of the essence, so if anyone has tried any combo of drugs that has had positive results for shrinking this kind of tumor, please let me know!! Thank you:)

AuthorUnknown

AllisonBroox said:

Hi I'm Allison. I'm 24 years old and was just diagnosed in June w/ cholangiocarcinoma. My tumor is a little bigger than a grapefruit inside the right half of my liver. Since my tumor is so big, my doctors at UCLA have told me that it's too big for surgery or radiation. I've been doing chemo since mid-June. I was on Gemsar and Cisplatin first. Unfortunately, there were no changes in the scans after 7 weeks w/ that combo. I'm now on a different type of chemo called Folfox 6 where I take the chemo home w/ me and have it administered through a port-a-cath for 46 hours. Right now I feel fine for the most part and the side effects from the chemo haven't been too bad. I know this is a serious disease though and that time really is of the essence, so if anyone has tried any combo of drugs that has had positive results for shrinking this kind of tumor, please let me know!! Thank you:)

I hope you read my previous post. If I can be of any help please post. Keep your hope up. Let me know if you want my email aadress. Take care!

AuthorUnknown

AuthorUnknown said:

I hope you read my previous post. If I can be of any help please post. Keep your hope up. Let me know if you want my email aadress. Take care!

My previos post was directed to Allison Broox.

ianryan

AuthorUnknown said:

My previos post was directed to Allison Broox.

Hi Tach7
I had a liver transplant July 10th at Mayo Jacksonville, Florida. I got diagnosed in Rochester, but had to go to Florida for transplant. I'm glad to hear that all is going well for you. I haven't met another cholangio tranplant patient, I would enjoy hearing from you. All is going well for me at this point.
Take care.

AuthorUnknown

ianryan said:

Hi Tach7
I had a liver transplant July 10th at Mayo Jacksonville, Florida. I got diagnosed in Rochester, but had to go to Florida for transplant. I'm glad to hear that all is going well for you. I haven't met another cholangio tranplant patient, I would enjoy hearing from you. All is going well for me at this point.
Take care.

Hi Anne

I am glad to hear that you had liver transplant and all is well for you now.

My apetite returned right away after surgery. I felt rather chilly in the evening for about a year. At the 4 month checkup, they felt I was doing quite well and didn't need liver biopsy. I have been taking only Prograf and physically active. I had flu shot last year and plan to have it yearly. I just completed the series of Hepatitis A&B shots. My CA 19-9 was undetectable at one year checkup and I hope it remains that way.

When were you dignosed? Why did you go to Mayo Jacksonville, Florida instead of Rochester, MN? What lymph node was involved? I was depressed and quite worried when they told me that mine was inoperable. I realized later on that the term "inoperable" was not an exclusion for liver transplant as long as the metastasis was not out of the liver and biliary tree. I believe that by this time you are already back home. I hope that your recovery is uneventful.

I know some patients out there with cholangiocarcinoma may not realize that they are candidates for liver transplant. There is hope. I met one patient who had liver transplant in 1984 for this disease.

ianryan

AuthorUnknown said:

Hi Anne

I am glad to hear that you had liver transplant and all is well for you now.

My apetite returned right away after surgery. I felt rather chilly in the evening for about a year. At the 4 month checkup, they felt I was doing quite well and didn't need liver biopsy. I have been taking only Prograf and physically active. I had flu shot last year and plan to have it yearly. I just completed the series of Hepatitis A&B shots. My CA 19-9 was undetectable at one year checkup and I hope it remains that way.

When were you dignosed? Why did you go to Mayo Jacksonville, Florida instead of Rochester, MN? What lymph node was involved? I was depressed and quite worried when they told me that mine was inoperable. I realized later on that the term "inoperable" was not an exclusion for liver transplant as long as the metastasis was not out of the liver and biliary tree. I believe that by this time you are already back home. I hope that your recovery is uneventful.

I know some patients out there with cholangiocarcinoma may not realize that they are candidates for liver transplant. There is hope. I met one patient who had liver transplant in 1984 for this disease.

Hi Tach7,
Yes my recovery was uneventful, I was quite a boring case as the surgical resident said, I like boring. I was in hospital 5 days, and spent 21 days in Jacksonville post-op. My pre-eval was 4 weeks, then 3 1/2 weeks on the list. I got a domino liver.
The worst part of post-op was the nausea after release from hospital, lasted 4 days. I get some side-effects from the drugs, leg cramps, insomnia, but nothing that stops me from getting on with my life.
The transplant was quite a turn of events for me , Rochester would not consider me for transplant because of the positive lymph node near the bile duct, Jacksonville were not as worried. I was diagnosed March 3rd. They did a laparotomy for a suspected stricture, but found the cancer. I was inoperable, and like you given a year to live.
I go back to Jacksonville November for my four month.
Was your CA19-9 very elevated? Mine was high normal.
Good talking
Anne

AuthorUnknown

ianryan said:

Hi Tach7,
Yes my recovery was uneventful, I was quite a boring case as the surgical resident said, I like boring. I was in hospital 5 days, and spent 21 days in Jacksonville post-op. My pre-eval was 4 weeks, then 3 1/2 weeks on the list. I got a domino liver.
The worst part of post-op was the nausea after release from hospital, lasted 4 days. I get some side-effects from the drugs, leg cramps, insomnia, but nothing that stops me from getting on with my life.
The transplant was quite a turn of events for me , Rochester would not consider me for transplant because of the positive lymph node near the bile duct, Jacksonville were not as worried. I was diagnosed March 3rd. They did a laparotomy for a suspected stricture, but found the cancer. I was inoperable, and like you given a year to live.
I go back to Jacksonville November for my four month.
Was your CA19-9 very elevated? Mine was high normal.
Good talking
Anne

Hi Anne

Yes my CA19-9 was higher than normal.

Good luck

prrhaus

ianryan said:

Hi Tach7,
Yes my recovery was uneventful, I was quite a boring case as the surgical resident said, I like boring. I was in hospital 5 days, and spent 21 days in Jacksonville post-op. My pre-eval was 4 weeks, then 3 1/2 weeks on the list. I got a domino liver.
The worst part of post-op was the nausea after release from hospital, lasted 4 days. I get some side-effects from the drugs, leg cramps, insomnia, but nothing that stops me from getting on with my life.
The transplant was quite a turn of events for me , Rochester would not consider me for transplant because of the positive lymph node near the bile duct, Jacksonville were not as worried. I was diagnosed March 3rd. They did a laparotomy for a suspected stricture, but found the cancer. I was inoperable, and like you given a year to live.
I go back to Jacksonville November for my four month.
Was your CA19-9 very elevated? Mine was high normal.
Good talking
Anne

Hi ianryan,

First of all my thoughts and prayers are with you and your family. My mom just passed away on 9-23-04 of cholangiocarcinoma. UCLA told her there was nothing for them to do and discharged after being in the hospital off & on. Her insurance ran out so they pretty much shut the door in her face. They had given us hope of radiation and chemo but unfortunately that never happened. She was diagnosed 8-17-04. They said the only thing they could offer was an ERCP and hospice care. 2 ERCP's were performed and with the 2nd she caught an infection and we had to rush her to the ER. She was in the hospital for about 7 days. The final day we took her home and the next morning she passed away. She was glad to be home. Even though she couldn't speak anymore she still had all her senses. She smiled when I told her she was home and I treasure that smile so much.
I'm glad to know you aren't giving up and that you keep trying. Don't let those doctors tell you otherwise. Keep your head up and confidence.
God Bless,
Trish

baldnblonde

ianryan said:

Hi Tach7,
Yes my recovery was uneventful, I was quite a boring case as the surgical resident said, I like boring. I was in hospital 5 days, and spent 21 days in Jacksonville post-op. My pre-eval was 4 weeks, then 3 1/2 weeks on the list. I got a domino liver.
The worst part of post-op was the nausea after release from hospital, lasted 4 days. I get some side-effects from the drugs, leg cramps, insomnia, but nothing that stops me from getting on with my life.
The transplant was quite a turn of events for me , Rochester would not consider me for transplant because of the positive lymph node near the bile duct, Jacksonville were not as worried. I was diagnosed March 3rd. They did a laparotomy for a suspected stricture, but found the cancer. I was inoperable, and like you given a year to live.
I go back to Jacksonville November for my four month.
Was your CA19-9 very elevated? Mine was high normal.
Good talking
Anne

Hi ianryan,

I hope that you might still be looking at this site. My husband was diagnosed with cholangiocarcinoma in November. It has been a whirlwind but am very curious about your transplant. He will be listed as of next week. Can you tell be what a 'domino liver' is? Is this why you were only on the list for 3 weeks? We have already discussed with doctors at UCLA that he should accept a 'less than perfect liver'. We understand his overall score will be low. I would love to hear more about your experience.

My thoughts are with you and your family and happy to hear you are on the road to recovery!

Tina

dmeyer9

baldnblonde said:

Hi ianryan,

I hope that you might still be looking at this site. My husband was diagnosed with cholangiocarcinoma in November. It has been a whirlwind but am very curious about your transplant. He will be listed as of next week. Can you tell be what a 'domino liver' is? Is this why you were only on the list for 3 weeks? We have already discussed with doctors at UCLA that he should accept a 'less than perfect liver'. We understand his overall score will be low. I would love to hear more about your experience.

My thoughts are with you and your family and happy to hear you are on the road to recovery!

Tina

Hello Tina and all,
My name is Cherish, and last year my 42 husband was diagnosed with stage IV cholangiocarcinoma. He passed away 4 months later. I am writing you to let you know about the types of treatment/pallliative care that we undertook for David, because I believe that for those of you that find this disease early enough, some of this infomation may be of help. I am not a doctor. I am not a professional researcher. I am not recommending any of these options. I am just passing along my experience and my unprofessional opinion.

There is another posting in this site that I wrote that describes the chemo (Xeloda) and other drugs Actigal (ursodial) to make the bile less viscous) and Celebrex (it has been suggested that Celebrex helps with this type of cancer) that we used, so please look for that infomation if you are interested. We also had plastic stents placed two times to help with the drainage. The stents seemed to be a moderate help -- mostly for comfort. These were done at the University of Colorado Health Sciences.

The final method we undertook was Photodynamic Therapy (PDT) at the Mayo Clinic in Rochester. I read a finding by Dr. Maria Anna Ortner in Switzerland that discussed her success rates with PDT for late stage Cholangiocarcinoma and wrote to her for information. (Successful photodynamic therapy for nonresectable cholangiocarcinoma: a randomized prospective study. Ortner ME, Caca K, Berr F, Liebetruth J, Mansmann U, Huster D, Voderholzer W, Schachschal G, Mossner J, Lochs H.) Since it was not reasonable to go to Switzerland for the treatment, Dr. Ortner gave me the following contact information for physicians that are performing the treatment in the US. (Dr. Michell Depot from Axcan knows all doctors performing this treatment. mdepot@AXCAN.com).

When I contacted them, they suggested that the Mayo could perform the treatment, and we went to see Dr. Pete deGroen (hepatologist http://www.mayoclinic.org/gi-rst/10032835.html) and Dr. Wang (the doctor that would administer the PDT http://www.mayoclinic.org/gi-rst/10031251.html) for this procedure.

While the studies indicated it was a good choice for us, the procedure was very difficult. One of the requirements is that you must remain out of ALL natural light (sunlight and bright incandescent lights included) for 30 days. We had to seal our home windows with landscapers plastic to keep out the light. We also had to change all of our lightbulbs. And of course, he had to be totally covered when we flew back from the Mayo.

The hope was that the PDT would help stop the growth of the cancer and get it to shrink so that the chemo could work. I do believe that there are instances where, if found early enough, the PDT would help someone. Ultimately our goal was to get the cancer to go away so he could get on a donor list. We also found out that he had PSC (primary schlerosing cholangitis)so a liver transplant was the only solution -- but we were told we only get that was if the cancer was gone.

I hope that with more research there will be better ways to find this disease before it reaches terminal stage and that there will be better treatment/palliative options. I offer you all my solidarity through this and I hope that good care can be discovered.

I can be reached at cherish_meyer@hotmail.com and I am willing to share any information that I have found.