Cholangiocarcinoma

MCM2015

Hello, 

I am new to this forum. My husband was diagnosised March of this year with Stage IV Cholangiocarcinoma. He had started having issues through out the last year that we just thought to be his hectic work schedule and simple aging. The tumor on the right lobe of the liver is extremely large. It covers the entire lobe. The left lobe has a smaller tumor. They have did chemo embolization on the larger tumor and a RFA on the smaller. They are unoperable. The cancer has spread to lymph nodes aroung the heart. We are waiting for the end of June to have another scan to see if any of the treatments have shrank the tumors. He has refused regular chemo treatments because he prefers to die of Cancer, not Chemo. His abdomen is swollen along with his liver. He has lost alot of weight. He isnt ever hungry. He has pain medication for comfort. He spaces out often and there is confusion. There isnt anyone but us to deal with this on a personal level and it is hard. We do not know what to expect. He is miserable. It is heartbreaking to watch. 

Is there anyone else out there that feels lost?

MCM

Jan4you

First of all MCM, I am truly

First of all MCM, I am truly sorry for all your husband and you are going through.

My niece was just diagnosed with same thing two weeks ago. At first she was given 11 months to live with chemo. BUT her hubby did a search and found a Oncologist and Radiologist who do Y90 treatment. It is a type of radiation treatment that goes is not done as typical radiation treatments.

Anyway, now with this Y90 treatment along with chemo, she has a chance of not only shrinking the tumors but having them removed or the cancer stopped. It is very exciting and hopeful.

Now she doesn't have any mets at this time.

Maybe you could research this treatment and see what they say?

Again, I am sorry for what you are both going through.

And try the Cancer Society perhaps, to find a support group?

I am not as knowledgable as others on here may be about support groups.

Sending you healing light and care for support and more information!

Hugs, Jan

KJinFLA

Jan4you said:

First of all MCM, I am truly

First of all MCM, I am truly sorry for all your husband and you are going through.

My niece was just diagnosed with same thing two weeks ago. At first she was given 11 months to live with chemo. BUT her hubby did a search and found a Oncologist and Radiologist who do Y90 treatment. It is a type of radiation treatment that goes is not done as typical radiation treatments.

Anyway, now with this Y90 treatment along with chemo, she has a chance of not only shrinking the tumors but having them removed or the cancer stopped. It is very exciting and hopeful.

Now she doesn't have any mets at this time.

Maybe you could research this treatment and see what they say?

Again, I am sorry for what you are both going through.

And try the Cancer Society perhaps, to find a support group?

I am not as knowledgable as others on here may be about support groups.

Sending you healing light and care for support and more information!

Hugs, Jan

Your neice

Hi Jan,

How is your neice now? I was just diagnoised with intraheptic cholangiocarcinoma. My tumor is 7 cm in my upper right lobe. they are going to use the ThereSperes to shrink and then surgically remove it. I will have both lobes treated with the spheres an live the rest of my life with my left lobe. I wonder how long this treatment works before it comes back. Not meaning to sound negative, but it is a reality. I'm going to start taking this herbal remedy called Essiac.

Do you know how long the treatments last?

Thanks,

KJ

Fortunate2BAlive

Cholangiocarcinoma

Hi KJ, Jan, MCM, and others,

I am new to the website and wanted to reach out to let you know that there are others surviving this terrible disease.  I have communicated with others that are over five and ten years out from their initial diagnosis.  I, personally, have been fortunate enough to be disease-free since my difficult surgery in April, 2015.  Medical research indicates that surgery provides the best long-term prognosis.  Despite being told by three other leading doctors that I was NOT a candidate initially for surgery, the innovative multi-disciplanary team at Columbia Presbyterian in NYC used cutting-edge techniques to save me, and others. 

If experience has taught me anything so far, it is to have a positive attitude, surround yourself with positive loved ones, exercise and eat better, pray, and find the right surgeon.  I travelled a thousand miles to do it two years ago and now it is easier to get 2nd opinions without travelling.  Most surgeons are very good, but not ALL surgeons are willing and capable to handle the intricacies of this deadly disease that presents itself in unique ways. 

Best of luck to you.

PM me if I can be of any assistance.

1MrsNoz

Fortunate2BAlive said:

Cholangiocarcinoma

Hi KJ, Jan, MCM, and others,

I am new to the website and wanted to reach out to let you know that there are others surviving this terrible disease.  I have communicated with others that are over five and ten years out from their initial diagnosis.  I, personally, have been fortunate enough to be disease-free since my difficult surgery in April, 2015.  Medical research indicates that surgery provides the best long-term prognosis.  Despite being told by three other leading doctors that I was NOT a candidate initially for surgery, the innovative multi-disciplanary team at Columbia Presbyterian in NYC used cutting-edge techniques to save me, and others. 

If experience has taught me anything so far, it is to have a positive attitude, surround yourself with positive loved ones, exercise and eat better, pray, and find the right surgeon.  I travelled a thousand miles to do it two years ago and now it is easier to get 2nd opinions without travelling.  Most surgeons are very good, but not ALL surgeons are willing and capable to handle the intricacies of this deadly disease that presents itself in unique ways. 

Best of luck to you.

PM me if I can be of any assistance.

28 Year Old Son Diagnosed with Cholangiocarcinoma

Bless you Fortunate2BAlive!

Your post has given me hope!  My 28 year old son was diagnosed with Stage IV Intrahepatic Cholangiocarcinoma Dec.1st.  He had his liver lobes 1-5 and partial 8 resected along with his bile duct and lymph nodes.  Can you give me more details about your diagnosis.  Was it intrahepatic?  Was it in your lymph nodes?  How exactly were you treated?  He is being treated at the Lineberger Cancer Institute at the University of Chapel Hill.  

Desperate Mom Searching for Details!

PS- this is my first post on this site and really any other.  

 

ShellyL

Cholangiocarcinoma diagnosed 2014

Hi,

I had to join tonight after reading everyone's experiences. I have been fighting Intrahepatic Cholangiocarcinoma since Dec. 2014. I had my first surgery Jan 2015 and my second surgery Sept. 2016. Between surgeries I have done chemo. Chemo sucks but I believe it helps keep me alive. I am presently going to be assessed for Y-90 also known as TARE. I now have another tumor on the back of my liver which is harder to reach with surgery so I decided to try the TARE. The doctors have told me there is no cure for this cancer but I'll keep chasing it and buying myself time with my family as long as I can.

 I refuse to give up and I stay positive. I am a single mother and live everyday for my kids. My relationship has become Stronger with my God so I pray a lot more now... something I did not do much before.

I hope my information can help others. If you have any questions please ask.

I am new to this site and not really sure of all the ins and outs with it.

-ShellyL

 

mattiegirl

Hi,

Hi,

My husband was just diagnosed with Intrahepatic Cholangiocarcinoma Jan 10, 2017 he is doing chemo right now , can I ask where you are getting the Y-90 done at? We live in a rural area and are thinking of traveling to MD Anderson in Texas when he is done with his first round of chemo.

rostrov11

Fortunate2BAlive said:

Cholangiocarcinoma

Hi KJ, Jan, MCM, and others,

I am new to the website and wanted to reach out to let you know that there are others surviving this terrible disease.  I have communicated with others that are over five and ten years out from their initial diagnosis.  I, personally, have been fortunate enough to be disease-free since my difficult surgery in April, 2015.  Medical research indicates that surgery provides the best long-term prognosis.  Despite being told by three other leading doctors that I was NOT a candidate initially for surgery, the innovative multi-disciplanary team at Columbia Presbyterian in NYC used cutting-edge techniques to save me, and others. 

If experience has taught me anything so far, it is to have a positive attitude, surround yourself with positive loved ones, exercise and eat better, pray, and find the right surgeon.  I travelled a thousand miles to do it two years ago and now it is easier to get 2nd opinions without travelling.  Most surgeons are very good, but not ALL surgeons are willing and capable to handle the intricacies of this deadly disease that presents itself in unique ways. 

Best of luck to you.

PM me if I can be of any assistance.

Surgery option

My mom had a surgery in MSK but it was interrupted due to a 2 mm spread.  Then she had 10 chemos and was told that will be re-evaluated for surgery again. Due to  a new micro spread she was told that she is not candidate for surgery.  Please provide me with the names of the surgeons who performed the surgery in Columbia Presbyterian for you.  I had a breast cancer 5 years ago and also had a surgery in that hospital.  I am very happy for you.

I appreciate all your help

rostrov11

Fortunate2BAlive said:

Cholangiocarcinoma

Hi KJ, Jan, MCM, and others,

I am new to the website and wanted to reach out to let you know that there are others surviving this terrible disease.  I have communicated with others that are over five and ten years out from their initial diagnosis.  I, personally, have been fortunate enough to be disease-free since my difficult surgery in April, 2015.  Medical research indicates that surgery provides the best long-term prognosis.  Despite being told by three other leading doctors that I was NOT a candidate initially for surgery, the innovative multi-disciplanary team at Columbia Presbyterian in NYC used cutting-edge techniques to save me, and others. 

If experience has taught me anything so far, it is to have a positive attitude, surround yourself with positive loved ones, exercise and eat better, pray, and find the right surgeon.  I travelled a thousand miles to do it two years ago and now it is easier to get 2nd opinions without travelling.  Most surgeons are very good, but not ALL surgeons are willing and capable to handle the intricacies of this deadly disease that presents itself in unique ways. 

Best of luck to you.

PM me if I can be of any assistance.

Surgeon in Columbia Presbyterian

I am new to this forum.  I am not sure if I sent this question to Fortunate2BAAlive.  Please help me to send it.  Thank you very much.

My mom had a surgery in MSK but it was interrupted due to a 2 mm spread.  Then she had 10 chemos and was told that will be re-evaluated for surgery again. Due to  a new micro spread she was told that she is not candidate for surgery.  Please provide me with the names of the surgeons who performed the surgery in Columbia Presbyterian for you.  I had a breast cancer 5 years ago and also had a surgery in that hospital.  I am very happy for you.

I appreciate all your help

prayformymama

My Mother Needs Your Help

Hello All,

I've been an active memeber with the Cholangiocarcinoma Foundation Discussion Board and thought I would share my story here as well.

My mother, Debbie (61) was diagnosed with Stage 4 ICC. She has tumors on the left and right lobes of the liver ranging from 2-8cm large and shows mets in the lyph-nodes in her abdomen and potential met in her skull which is soon to be biopsied.

Monday we started chemo which we've been told is a form of palliative chemo therapy to control pain, not curable. Which has been a very difficult thing to swallow to say the least. I've reached out to U of C and Northwestern here in Chicago but none of the trials have sounded promising enough at the moment so we started with the GEM/CIS therapy.

So far everything is good but she's only 4 days in. I pray I can keep her eating and drinking plenty of fluids. I honestly wish Thanksgiving yesterday would last forever. I can't imagine her not being here next year. I'll post hopefully positive progress next week. Thanks for all the support on here this is a wonderful resource for myself and others dealing with a loved one with CC. note. posted 11/2016The rest of my posts are here at this link:

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15595

She's currently starting her second round of treatment since the first round of the Gem/Cis didn't do anything and her blood reacted poorly to the treatment. She was suppose to start FolFox today but her platlets were too low so we're hoping she will be able to start tomorrow. My mother and I welcome any and all suggestions and words of wisdom as she and the family continue this awful battle.

Thank you in advance. We are humbled by the outpour of support on all these discussion boards.

Debbie's Son Joe

rostrov11

Fortunate2BAlive said:

Cholangiocarcinoma

Hi KJ, Jan, MCM, and others,

I am new to the website and wanted to reach out to let you know that there are others surviving this terrible disease.  I have communicated with others that are over five and ten years out from their initial diagnosis.  I, personally, have been fortunate enough to be disease-free since my difficult surgery in April, 2015.  Medical research indicates that surgery provides the best long-term prognosis.  Despite being told by three other leading doctors that I was NOT a candidate initially for surgery, the innovative multi-disciplanary team at Columbia Presbyterian in NYC used cutting-edge techniques to save me, and others. 

If experience has taught me anything so far, it is to have a positive attitude, surround yourself with positive loved ones, exercise and eat better, pray, and find the right surgeon.  I travelled a thousand miles to do it two years ago and now it is easier to get 2nd opinions without travelling.  Most surgeons are very good, but not ALL surgeons are willing and capable to handle the intricacies of this deadly disease that presents itself in unique ways. 

Best of luck to you.

PM me if I can be of any assistance.

Surgeon in Columbia Presbyterian

I would appreciate if you provide me with the name of the surgeon in Columbia Presbyterian.