Topic: Self Introduction

Introducing myself...with a huge desire to get involved in the ongoing discussions.  My name is Tom, 68 years old living in Eastern Washington State. I was diagnosed with CC towards the end of February of this year...after a small time period during which my family physician and a general surgeon believed that something else might be going on....and it almost goes without saying that I am extremely worried as to how this thing may develop.  I had all of the usual symptoms at that time...rapid weight loss (30 pounds in 6 weeks), very high bilirubin level, loss of appetite, etc.  After a week in the local hospital...and a failed attempt to place stents in the bile duct I was sent home with a biliary drain in my side.  At the end of March stents were finally placed in the bile duct which the doctor described as a very difficult procedure (the doctor indicated that it took 5 times longer than normal to do the procedure).  I began chemo treatments in the middle of April and they are ongoing at present....Oxaliplatin and Gemzar.  My oncologist and several other doctors feel that resection and radiation are out of the question since the cancer has wrapped its nasty fingers around the blood supply going into the liver....and one lobe of the liver is also showing presence of the CC there.  My concern is underscored by the fact that about three weeks ago I had a CT scan which shows that the tumor has neither shrunk in size (it was 4 centimeters in size at the start) nor has it enlarged at all....sooooo, chemo treatments continue.  I am heartened to read here that there is hope...and I am also made aware now that there are other avenues of treatment to explore.  I agree wholeheartedly with a statement that I read on this website that "The last thing to die is hope!".....it has to be that way.

Re: Self Introduction

Dear TWilbur, welcome to our extraordinary family but sorry you had to join us. A stable tumor is good, much better than a growing one. We like the word stable. It sounds like you are tolerating the Chemo ok, and that is a good thing. By the way HOPE is our middle name around here! Now that you have joined us, please feel free to chime in to advise, vent or laugh. And please keep us updated on how you are doing 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: Self Introduction

TWilbur,

Welcome to this site, but sorry you had to find us. We are all like a family here, so we will be happy to hear your thoughts, questions, opinions, rants, jokes, or whatever you wish to post. Stable is a good word to us, although we would rather hear shrinkage. My daughter, age 26, is the one with CC. I will never give up hope for her or for anyone else suffering with this terrible cancer. I wish you all the best on your journey and we are all here for you.

-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: Self Introduction

Thank you Lainy and Pamela.  I consider it somewhat unfortunate that since the very beginning of this journey that many doctors and specialists who have worked with and on me have not had even one positive thing to say to me (at the time that I was in the hospital there were up to 7 different physicians trying to decide what to do).  Finally, here...I think...I am able to find some positive feedback.  Please know that I appreciate your support.

Re: Self Introduction

Hi.
If you want to,get a 2nd opinion by fax all the record to Dr. Keto to see whether his expertise is appropriate for you.
It seems the doctors you have is very limited on the experience of treating.

http://www.cholangiocarcinoma.org/punbb … hp?id=8366

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: Self Introduction

Hi Tom,

Welcome to the site. Sorry that you had to find us all here but I am glad that you have joined us all, as you will get tons of support and help from everyone. If we can help in any way at all then all tyou have to do is ask away and we'll do what we can to help. We can't promise to have all the answers to all the questions, but we'll do our best to help!

Don't give up hope Tom and please know that we are here for you. And I am 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.