Topic: New member

I had liver cancer surgery 2.19.13. Removed 60% of liver and gallbladder.  I have intrahepatic cholangiocarcenoma. Chemo not option now as this type cancer not very receptive.

Re: New member

ghamilton...a warm welcome to our site.  Congratulations on the recent resection.  Hoping for you to be well along in your recovery and that each day things become a bit easier for you.  So glad that you have found us.  We are a unique group of people with a common purpose of interacting, sharing thoughts and ideas and supporting each other all the way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

Hi,
http://www.cholangiocarcinoma.org/punbb … 604#p70604

God bless

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member

Looking forward to the support.  Like many I was a healty guy on Thanksgiving and 3 months later had cancer surgery and found out my type is rare 5-10%.  My wife and I are still working to put our minds and hearts around the news.

Re: New member

Welcome to the site ghamilton, sorry you had a reason to join us, but you have definitely come to the right place for information and support. 

I am very happy that you were a candidate for surgery.  About the chemo options, you may want to seek a second opinion.  Not everyone does chemo after surgery, however, many do and you should be aware of all of your options to make the best, most informed decision possible.

So many people on this site have expressed the same sentiment...having been healthy and feeling good up until the day of their diagnosis or first symptom of this disease. It is very scary that way and really takes people off guard.

You are not alone!  We are all here for you.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New member

ghamilton.... There is is a big shift from just a few years ago when the majority of physicians did not recommend adjuvant therapy.  At present though we see for 7 of 10 physicians prescribing some sort of therapy.  I agree with Randi, a second or even third professional opinion is in order. This disease requires patients to become "very" informed, as too much still is unknown and too little Cholangiocarcinoma research is conducted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

Dear ghamilton, welcome to our remarkale family, you have come to the best place to be. First you get a big YIPPEE for having the surgery. Next I would like to echo that it is very important to get 2nd and 3rd opinions because we know many have had chemo after surgery. I know you and your wife have gone through a ton of emotions and anxiety but I truly feel another opinion would set your mind more at ease and would give you validation that doing nothing may be the right thing. The worst that can happen is someone comes up with a game plan which is what I think you both need right now. Otherwise you feel you have been thrown out the door. Please keep us postd as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member

Lainy and all....... We live in Syracuse,NY and have appt with local Oncologist for second opinion. This Hem/Oncology group has great reputation and treats whole patient: medical, alternatives, nutrition.  I feel fortunate.   As you mention I am looking for confirmation of what I received at Cleveland Clinic.

Re: New member

Great! That makes me feel so good and it sounds as though you have a great team around you. Best of luck and thanks for letting us know. We are nosey and like to know everything!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member

ghamilton,

I live in Rochester, NY, just down the thruway.  I had my treatment at Wilmot Cancer Center at Strong Hospital in Rochester.  I also got second opinions from Roswell Park in Buffalo, Memorial Sloan Kettering, and I took a trip to Minnesota to to to the Mayo Clinic.

Best of luck with your second opinions and treatment.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New member

Gregg...my husband was born and raised in Syracuse.  Have been there a few times myself.  In fact, my last trip was in March of last year.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

Go Orange!  big_smile

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New member

Randi... Going to be tough for thr Orange.   Hopefully they are as tough as us Cancer survivors!!!!

How did you keep going with all the set backs you have had.   You truly are a SURVIVOR.

Keep strong

14 (edited by randigb Tue, 19 Mar 2013 18:21:48)

Re: New member

Thank you.  But eh, you know, we don't pick the hand we are dealt and have to make it through.  I have a great support system and just put one foot in front of the other.  No more then everyone on this site does.

Can't say I haven't had my bad days for sure like everyone else.  I try and stay in the moment, not look back too often with regret, and set reasonable goals for myself.

You are a survivor too!!  Every day is a day.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New member

Hi ghamilton,

I would like to welcome you to this site and congratulate you on your resection. I would definitely go for the 2nd opinion because I would be too scared not to do some kind of chemo after surgery. You gotta get those pesky little microscopic cells. My daughter, Lauren is having a resection next week and she is already saying she wants chemo afterwards. I am hoping for all the best for you in the future.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New member

Hi Gregg,

Welcome to the site. Sorry that you had to find us all but I'm glad that you've joined us here as you are in the right place for support and help, and I know you will get loads of both!

Thats great that you were able to have a resection and I hope that you are recovering well from that. And good to hear you say as well that you are seeking a second opinion on further treatment. I do hope that you get some good news from your app and please let us know how you get on.

Keep coming back here Gregg and know that we are all here for you. Looking forward to hearing more from you.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member

Hello gregg, I too had a very similar situation, intrahepatic tumor,resection     and gall bladder...no lymph node involvement, 60 percent of my liver removed, and my doctor, mind you it was 7 years ago, recommended as yours did, to forgo chemotherapy, he said if it would make me feel better mentally that I am doing something,he would prescribe it, which I decided against, and in my case it made no difference, he said after a major surgery like that your body's immune system is on full alert with all the healing going on the best thing I could do for myself is eat healthy and let the building blocks be available for your liver to regrow in just 4 to 6 weeks time.there are 57 genetic varieties of cholangiocarcinoma worldwide known to medicine and not all behave and respond to chemo, some do.make your own decision and like many cancer after treatments it is insurance as some doctors put it. Good luck with your decision on this just take care of yourself..Pat

Re: New member

Pat....would love to hear more of the 57 genetic varieties of this disease.  Would you mind and share with us a bit more? 
Thanks and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

there is a website called rarecanceralliance.org. I did a lot of reading in their 'trials, studies, section and there are all kinds of medical studies from around the world that one was about a genetic study of different samples from around the globe. another fascinating report was about the same type of genetic study which found the cells in cholangiocarcinoma tumors in bile ducts are actually liver cells that morphed into bile duct cancer cells, the only time in medical history so far a human cell morphed into another. I used to get lost in those medical study reports... Pat

20 (edited by PCL1029 Wed, 03 Apr 2013 12:22:08)

Re: New member

Hi,
What is the name of the article indicated" there are 57 genetic varieties of cholangiocarcinoma"? I would like to know too.
In the beginning of liver cells development the line of distinction between hepatocytes and cholangiocytes is not very distinctively clear. as the following article said both of them are "arise from the same bi-potential progenitor cells".

http://www.ncbi.nlm.nih.gov/pubmed/21711594

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

21 (edited by marions Wed, 03 Apr 2013 16:30:35)

Re: New member

Pat...It is of most importance to distinguish that some studies suggest something to be true wheras other studies prove for something to be true. You would want to look for peer reviewed studies and for clinical trials to validate initial findings.

How to Know If It's Accurate http://www.cancer.net/all-about-cancer/ … s-accurate

At present no genetic link has been established for our disease.

A bit about cancer:

Cancer starts when cells in a part of the body start to grow out of control. Cancer cell growth is different from normal cell growth. Instead of dying, cancer cells continue to grow and form new, abnormal cells. Cancer cells can also invade (grow into) other tissues, something that normal cells cannot do. Growing out of control and invading other tissues are what makes a cell a cancer cell.

Cells become cancer cells because of DNA (deoxyribonucleic acid) damage. DNA is in every cell and it directs all the cell’s actions. In a normal cell, when DNA gets damaged the cell either repairs the damage or the cell dies. In cancer cells, the damaged DNA is not repaired, and the cell doesn’t die like it should. Instead, the cell goes on making new cells that the body doesn’t need. These new cells all have the same abnormal DNA as the first cell does.

People can inherit abnormal DNA, but most DNA damage is caused by mistakes that happen while the normal cell is reproducing or by something in the environment.


Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

A great link about cancer, cells, genes etc. Well worth a read.

http://www.cancerresearchuk.org/cancer- … -cancer-is

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member

I will try to find it if I can

Re: New member

Pat......  I have Oncologist appt this coming Monday for second opinion in Syracuse,NY.   This group treats the "whole" patient and looking forward to discuss potential options.   I am open to discuss anything that might help me live a long healthy life.
Gregg

Re: New member

Gregg there are a few key things I did that helped. You are  what you eat is true. eat a salad every day..avoid processed sugar, greasy food, fast food, do something that increases your pulse rate every day ( by that I mean get off the couch ) teach yourself to put your mind off your condition, one support group moderator I know said " a cancer patients subconcious mind is always trying to solve your problem." She said over 50% of cancer suvivors experience some sort of insomnia. I did and you need your rest. Do things you enjoy that relax you, go fishing or to the zoo, animals brighten everyones day, The first year I drank an herbal tea called essiac, this might just be snake oil or placebo, my daughter who was my key support person and a blessing came up with the stuff, and even if it is a mental thing, it helped I used cannibis to help my appetite, it helped me sleep, and it helped me take my mind off my health issues.It is slowly becoming legal for people like you and I. It is still not legal in  my state but  I found a way. those are the key ways I have tried to keep this cancer from starting over.I was never afraid to die either, what happens is going to happen, and after a while I began to ask myself "why was I left behind here? what is it I am here to do? I search every day why and I feel I am close. Take care of yourself and dont let lifes rat race wear you out, Pat