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Bile Duct Cancer

MTSIEN
Posts: 5
Joined: Nov 2008

Hi,

My name is Michael, I am a 67 year old Chinese male born in China and grew up in the New York City area.

Easter this year I had my gall bladder removed at Memorial Sloan Kettering in NYC where I had had a colon resection in May of 2006. The gall bladder was determined to be infected and was removed.

The pathology report indicated that there was high grade dysplaysia. The surgeon who I was referred to, first told us that they will keep me under observation. Not much later, MSK recommended that the the gall bladder stump be removed.

At the end of October I had my operation.The surgeon after the operation reported to my wife that he was shocked to find a cancerous tumor which he removed along with lymph nodes 4 of which were cancerous. He was able to do a resection of the bile duct.

The presentation was Bile Duct Cancer and that was confirmed by the pathology report. Fortunately no other organs were affected, nor was this related to the the previous colon cancer. All good news.

This is a rare cancer and will be treated by chemotherapy (Gemzar -Gemcitabine Hydrochloride and 5-FU Fluorouracil) and radiation. I will be starting my treatment at MSK before the Christmas holidays.

I am interesting in connecting with those who also have been diagnosed with Bile Duct Cancer, along with any individuals in who have suggestions about peer support groups or cancer coaches in NYC.

Blessings

Michael (michael.tsien@gmail.com)

Bill W
Posts: 5
Joined: Dec 2008

Hi Michael, My name is Bill and I also am dealing with bile duct cancer. I am 53 years old and Caucasion. I had Whipples surgery in september of 06 and they took 30 lymph nodes and 6 were cancerous. I went through 6 months of Gemzar and in the sixth month the cancer came back. I then went on oral Xeloda [5-fu] and radiation. My tumor markers kept rising and at 2000, they spread to my liver [5tumors] and my lungs[ 2 tumors]. My oncologist then put me on Cisplatin and Iranatekan and remarkably the tumors dissapeared after almost a year of this chemo. I am currently still on this regimen and after 3 more cycles, he plans to wean me off of chemo, God willing. I know the protocol is Gemzar but for me it was the Cisplatin and Iranatekan that worked. I wish you luck and if you have any questions or information that you want to share, please write back. Bill

MTSIEN
Posts: 5
Joined: Nov 2008

Thank you from responding to my posting. Since I am just recovering from my surgery I have only started to mine the various resources. Todays task is to get strong physically mentally and spiritually for this journey.

I have not heard the treatment plan yet but it consist of Gemzar and 5-FU . I am finding out what diet can help me through this process. I have begun to walk - to get strong and find a project or two to work on which going thru this process. I would be very grateful if you would share while I am going thru this, share your experience and on how you dealt with the various challenges that presented them selves before, during and after treatments . This all make help to make my journey easier.

What really gives me hope is that although you had the cancer go to your liver and lung that you are on the mend. It must have been really tough on you, and your family having the tumors return and in multiple sites. I will need help not to go down those negative black wholes of dispare. I need to keep busy , physically active , in community with friends etc and having a project to move my mind away from focusing on cancer and what if all the time.

Thanks for sharing. I will be writing for help. You can count on it.

My home mumber is 212-755-1059
Blessings

Mike

Bill W
Posts: 5
Joined: Dec 2008

Hi Mike, It sounds to me like you have the right attitude to beat this thing. I continued work with my chemo and it definitely kept my mind off it. Exercise is a great escape from stress and that is what you need. They say cancer does not like oxygenated areas. When you are receiving chemo, I have heard from Nutritionists here at Yale-New Haven Hospital in New Haven, Ct., that anti-oxidants can have a harmful effect on you, vitamins in particular. I have read that it is good to get the body into an alkaline state as opposed to an acidic state. I try to avoid acidic foods and take an acid reducer that I get over the counter at Wal-Mart. I have to take it because of my acid reflux I developed after the surgery. It's the generic form of Pepsid and about 7 bucks for a months worth.
Mike, I asked St. Theresa to ask God to help me get through this. When I had my clean cat scan recently, My Pakistani Oncologist said it was a work of God and a miracle. I have 3 kids, ages 19,16, and 11. When I would lie in bed in the middle of the night worrying about what would happen to my wife and them, I would do positive mental imagery, imagining that my deceased father and both sets of grandparents were at the wound site and they were scrubbing out al the cancer with brushes! Bernie Segal is a great author of Psycho-Sematic Healing and lives and lectures in the New Haven area.
Right now, like you said, it is time to get strong and positive. You made it through the surgery, which is no small deal, so you are halfway there. Chemo is not so bad and I will put you in my prayers Mike. Bill

falkol2002
Posts: 5
Joined: Dec 2008

Hi Bill W,
I am newly diagnosed. I see Dr. Arthur Levy and have just posted a blog. I am looking for support for this rare cancer. I want only positive reinforcement. I have been to the Cancer Treatment Centers of America in Tulsa Oklahoma. They were wonderful. I am receiving treatments here in Hamden, but will also follow up in Tulsa. Would love to connect and just talk.

Lillian

MTSIEN
Posts: 5
Joined: Nov 2008

Hi Lillian,

I am so glad to hear that you are having wonderful treatment at the Cancer Treatment Centers of America. It is very important to have faith, courage, and support of the doctors and facility that is caring for you. That is my belief.

I am blessed to be able to be treated at Memorial Sloan Kettering here in New York City, and currently undergoing Adjuvant chemotherapy and will also start radiation in February.

I am happy to to connect and just talk. I feel it is vital to reach out. I can't do this alone - I need all the support and input I can get.

I will help to be there for you if I can help.

Feel to call or email me and I will get back when I can.

You are no 1 - be proactive - live each day the best you can a day at a time.

Please give me your Blog info so I read about your journey.

Blessings,

Mike

212 755-1059
michael.tsien@gmail.com

ulli
Posts: 3
Joined: Aug 2009

Hi Lillian

My Husband had his Whipple last June and Chemo in New Haven. We are from North Haven.
Any questions, just ask
Ulli

MTSIEN
Posts: 5
Joined: Nov 2008

Hi Bill,
Your faith and spirit has brought you a miracle . What a blessing to have a clean scan given all that you have been through. You must be soooo relieved. I find I have to focus on the positive and what I can do to solve a problem and not to get immersed in the problem which just makes things so much worse. Keep going forward is key.

I am interested in what nutritional foods you had to help keep a alkaline state, and if you had a way of measuring to knowing when your were too acidic. I do not have acid reflux and so far have no need to take Pepsid etc.

Traditional Chinese and Indian Medicines have a grand history of recommending the right foods for each season and for specific health situations. Unfortunately I do not have any knowledge in this area but will be looking out for what is best.

The journey is life long, and right now I am on a steeper slope with more challenges. I will grow and become a better person having had this experience.

Blessing to you

Michael

SharFa
Posts: 4
Joined: Oct 2011

Bill W
Can you comment on your surgery? Did you have your operation at Yale?
Thank you.

falkol2002
Posts: 5
Joined: Dec 2008

Hi Mike,
I too am newly diagnosed. I loved your comments and agree not to go down the black hole of despair. Statistics don't mean a thing when you are the person going through the catastrophic event. I am amazed how many young people have this disease. I posted a blog explaining my situation. Please read and comment.
I am planning on going back to work on January 12. The chemo is not too bad and I am dealing with it o.k.
I think only postive thoughts and know that deep in my gut that all will be well. I am 56 years old and am not ready to throw in the towel.
Blessings to you in this coming New Year. Looking forward to hearing from you.
Lillian

davidW
Posts: 2
Joined: Jan 2009

To Michael, Bill, and Lillian,
I am sorry each of you has to endure the fight against this cancer. My wife also had bile duct cancer after a lifetime of perfect health and was able to battle it for a period well over twice the best prognosis she was given. However I lost her in November 2007.

When I saw your discussions I knew I had to make you aware of the major website dealing with this disease. It is cholangiocarcinoma.org and was started just under three years ago by a family in Utah who lost one of their members to this disease. They have also created the Cholangiocarcinoma Foundation, the first organization to be established to help fight bile duct cancer. The website is great and has many people there battling this disease who, like you, exchange information on doctors, hospitals, treatments, and all aspects of it. It was on this site that I got information that allowed us to select a doctor who was to operate on my wife, but the cancer became resistant to her chemo and began growing again before we could have it done.

My very best wishes and prayers go out to you. DO KEEP A FIGHTING ATTITUDE! Linda's oncologist told me that was one of the reasons she did so exceptionally well for so long. May God Bless You All.
Sincerely,
David

MTSIEN
Posts: 5
Joined: Nov 2008

Happy New Year David.

Thank you so much for sharing the information about the foundation. I have not had time to look at it but I have been looking out for all kinds of resources and support.

As I receive prayers I to pray for all others who are suffering and have life difficulties. I got to keep a good attitude - one day at a time, doing each day the best I can. Not to fight for me to slide back into despair, which is deadly for my spirit. I seek to fill my spirit buck filled the best I can.

I know despair and how deadly a place that is. ATTITUDE, SPIRIT, and ACTION are the keys to living a Joyous, Happy and Free life.

We all have lots to learn from Linda.

Blessing,

Michael

Bill W
Posts: 5
Joined: Dec 2008

dear Michael and Lillian; Nice to meet you Lillian. I'm even younger than you. I'm only 54. I'm glad to hear that you're doing well on the chemo that they're giving you and that you're going back to work. That's something you're taking back from cancer and that is a small victory. I've been on chemo for 2 years and have tried to keep my life as normal as it was before cancer. I only feel like a cancer patient 1 day every 3 weeks . They tried the Gemzar and 5-FU and radiation on me and it came back big time 5 months into chemo. It metastasized to the liver and lungs . Sisplatin and Iranatekan came next and the tumors stabilized for about 1 year and then disappeared!!! My point is that you, Michael and Lillian, have a good shot at beating this thing right now but if it does come back, Don't despair. You can still beat it. Lillian, I understand why you're upset that they did'nt take the tumor out when they had you open on the table. When I had 5 tumors on my liver, nobody would operate on me because it was cholangiocarcinoma. Michael, I don't knoe what foods help to get in the "alkaline" state,but I think that avoiding acidic foods like oranges and tomatoes help. Even though you don't have acid reflux, I think that taking an "acid reducer" (Pepsid) helps. I take 1 pill a day-Famotidine 20 mg is what it is. Lillian, I'll put you on my prayer list - right after Michael- for the most powerful of all cures. Peace and Love,Bill

relfish
Posts: 1
Joined: Dec 2009

Hi Bill

my name is richard and my wife was diagnosed with bile duct cancer in December09.
the news really shattered our world. she is only 45 years old and was in perfect health. we were told that the cancer was inopratal and was to start chemo 2 weeks ago but got really sick. she got a major infection at the stent which was placed in her bile duct. she is to start chemo this thursday if she gets a good report from her heart doctor today. i would like to chat with you more and get some info on your treatment

thanks
richard

RJohns2010
Posts: 3
Joined: Jan 2010

Hello Richard, Mike, Lillian,

My father Richard is currently at Shands hospital in gainesville Florida recovering from surgery for klastskins bile duct cancer.
he has been there for a little over 2 weeks now.We were hoping he would get to go home this weekend, but he keeps having complications..infection in part of the incision and now he has a bacterial infecion in his blood I believe they are calling sepsis. They are saying the can treat it with antibiotics, but I am starting to get nervous.
The doctor was reccomending he start radiation after he gets home because this type of cancer does not respond well to chemo???
Any speicific info you all are willing to share I would greatly appreciate.
They removed a small tumor from his bile duct ana a few lymph nodes. The pathology tested positive for cancer, but I am just not sure what to make of all this. I live out of town and am not able to be there every day to meet with the docotors, and dad is so medicated all the time, it is hard to communicate with him.
I am trying to research post sugery, but am not finding much.
I hope you all are recieving excellent treatment, and have good news to share.
We have been very pleased with Shands hospital so far....
my email address is cjemi215@msn.com if anyone would like to email..

Thank you so much and God Bless

2reasons2fight
Posts: 1
Joined: Jan 2010

Hi Richard - I am a 39 yr old female and was diagnosed about a month ago with bile duct cancer. I have had a whipple procedure done however 12 of 40 lymph nodes were positive, therefore I will be undergoing chemo and then radiation. I thought I was the only one in this age bracket with this form of cancer. I understand it is rare and tends to be diagnosed in older adults. I hope your wife is cleared by her heart doctor and able to undergo chemo. I will keep her in my thoughts. Please keep me posted on her progress.

mnm4242
Posts: 1
Joined: Feb 2010

My dad was recently diagnosed with this cancer. He went to Mayo Clinic in Rochester MN and was going to see if he would qualify for the Transplant protocol (Neoadjuvant therapy followed by liver transplant) for inoperatable klatskin tumors. They did all sorts of tests to see if it had started metastasizing and the test he had today (laproscopic surgery in a spot near his stomach) showed up cancer had spread to the lining of his stomach. So he doesn't qualify.

I am researching now to see what other options there are. I am really liking what I read above because everyone seems positive and that's what I feel I need right now. I am searching for hope. I will do anything to help save my dad. He is amazing. Anyways, good luck to all of you. He is 62.

Marianne

cvertz
Posts: 5
Joined: Feb 2010

My wife who is 26 years old was just diagnosed with this disease on February 17th. She was told that the tumors in her liver were inoperable because they have spread to her lymph nodes. She currently has an appointment for a second opinion at the Mayo Clinic with Dr. Yoon. If anybody has some information on good doctors fighting this disease or any information about clinics in the Chicagoland area, we are also going to the University of Chicago with Dr. Polite and Rosenbaum. Obviously she is very young and has a long fight ahead of her but all of your stories are inspirational and I would appreciate any help we can get at this point. Thank you all for your time.

mrslar
Posts: 9
Joined: Mar 2010

My prayers go to everyone who has posted here. My brother (43 years old) was diagnosed with bile duct cancer 3 weeks ago. He had a Whipple's procedure this past Friday at Johns Hopkins. Is is an awesome hospital and we thank God everyday that we got him in so quickly! We do not have pathology reports from Hopkins back yet, but the path reports from previous scope at different hospital said it was cancerous. He meets with his doctor on Monday morning and will be able to come home (we are 3-1/2 hours away from the hospital). I am very scared because of all the information I read about this on the internet.

Would appreciate you keeping my brother, Jerry, in your prayers, and I will definitely add all of you to mine!

mrslar
Posts: 9
Joined: Mar 2010

Dear cvert,

I am sure you are busy taking care of your wife, but I was wondering how she was doing? Has she started any type of treatment yet? I thought my brother was young to be diagnosed with this cancer, but she is even younger. My brother has an appointment with the oncologist at Johns Hopkins next Tuesday, and we will learn what his radiation and chemo regimen will be. I will keep your wife in my prayers, along with my brother! Good luck.

arood
Posts: 2
Joined: Apr 2010

Hi my name is Art, and 1 year ago Dr Roger Jenkins from The Lahey Clinic in Massachusets removed a tumor that a surgeon at Mass General deemed inoperable. The tumor was in the liver and the size of a basketball. There were 2 lymphnodes affected and several smaller tumors spread over the liver. He removed 75% of the liver and the gall bladder. It has grown back since. I did do chemo Gemzar and Oxsalyplatnum for 23 injections. Bad news is I just found out the cancer is back in both lungs, so I have another battle ahead. The point is that Dr Jenkins is known as one of the best surgeons in the country, I do not know if he can help you but maybe it is worth a try. I cannot say enough about the Doctor regardless of my final fate I will always think the world of him. I hope this helps.

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