Topic: Newly diagnosed and confused about next steps

My name is Mike, age 54, and I was diagnosed with cholangiocarcinoma last week.  I've been in/out of the hospital numerous times since February having had 5 ERCPs and finally surgery last week where it was determined that my situation is inoperable.  I have a mass covering the bile duct and a mass inside the liver affecting left and right hepatic ducts.  There is no evidence that the cancer has spread.  I was referred to Oncology who are now recommending a treatment of radiation and chemo (Xeloda)  followed by chemo (Gemzar).  From what I have researched, this treatment does not seem to have a high success rate.  I am interested in participating in a Clinical Trial but it seems overwhelming trying to understand how to find one that would be a good fit.   I've heard good things about immunotherapy and saw the Melinda Bachini posts.  My Oncologist did not seem to know much about Immunotherapy.  Anyone have any advice on if/how I can pursue this type of treatment.  Thanks in advance for any help and advice you can give me.

Re: Newly diagnosed and confused about next steps

Dear Michael, welcome to the best place to be for CC. While I cannot help with your question I know that others will be along to help. I would like to advise you that we are big believers in 2nd and 3rd opinions and it is of utmost importance to be treated by an ONC and at a hospital with strong experience in this field of CC. The good new is that they feel the CC has not spread. That is hope right there. Please keep us updated and stay tuned for more replies from your post.

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: Newly diagnosed and confused about next steps

Mike...first of all, "Welcome."  I'm fairly new to the boards also, diagnosed in late Feb, followed by surgery and now adjuvant chemo.  Second, I immediately liked your name....is my son's name...a very good name.  smile))

So, I 100% agree with Lainy.....no spreading of the cancer is good news and gives some hope. 

Also, unless you're being treated at a large medical center that regularly sees patients with this cancer, I highly suggest you get more opinions....and often you will need to get several.  I was fortunate enough to be deemed operable from the beginning as my ICC was found in late stage 2, but there are people on these boards who have had chemo first that shrunk their tumors enough to have surgery.  You have to find the right oncologist who will be aggressive, IMO.  CC is an aggressive cancer...and needs to have things thrown at it aggressively.  Unfortunately, to find those special oncologists means that for most of us, we'll have to travel away from home for the best treatment until we find one that doesn't say no...or at least has a positive plan.  People often think the big medical centers are impersonal, but I've been to Mayo two different times in my life and it was the most personalized and comprehensive medicine I've ever experienced.  I'm quite sure that the others are similar.  Melinda Bachini's story is nothing short of amazing and if you have a chance to pursue that, and want to do it, I say go for it.   I've been watching her posts and blog for a while now and it sure sounds promising.  If I were in her position....I'd go for it too.  Many on this board have a lot more experience and knowledge than I do and if you get to the point that you want names of oncologists or surgeons in big medical centers, they'll be quick to answer your questions with good, usable information.  You've come to the right place.

Iowa Girl
Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Newly diagnosed and confused about next steps

Mike....who diagnosed you and where are you being treated?

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: Newly diagnosed and confused about next steps

Hi Mike,  Welcome!  Glad you found us, but truly sorry you had a need to.  Can't add much at this point, but do agree you may want to get a 2nd and maybe 3rd opinion from oncologist's who are familiar with CC before making any decisions.   I'm sure others will be here soon with more advice and support.  Good luck to you on this journey that no one wants to face, but know we are here to help and support you in any way that we can.  Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Newly diagnosed and confused about next steps

Hi Mike,

I would like to add my welcome to the others here.  I am sorry you had a reason to find this board, but you will get great information and support from the people here.

I don't know anything about immunotherapy, but I imagine someone will come along who does.

Take care,
-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: Newly diagnosed and confused about next steps

Michael....Melinda is participating in the below clinical trial:
http://www.clinicaltrials.gov/ct2/show/NCT01174121
If you fit the criteria either you or your physician can contact:

For more information at the NIH Clinical Center contact NCI/Surgery Branch Recruitment Center    866-820-4505    ncisbirc@mail.nih.gov

Good luck and please keep us posted.

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: Newly diagnosed and confused about next steps

Thank you to everyone who replied to my post.  I appreciate the tips and advice.

mike

Re: Newly diagnosed and confused about next steps

michaellax wrote:

Thank you to everyone who replied to my post.  I appreciate the tips and advice.

mike

Re: Newly diagnosed and confused about next steps

Mike I agree with many others who have written. Its very important to get a second opinion and to seek an institution that knows Cholangiocarcinoma. My husband who has the disease was also told he was inoperable and ended up that in fact he was. It really depends on the specialist and institution that makes the difference. He was and is being treated at USC.

Re: Newly diagnosed and confused about next steps

His surgeon was Dr. Rick Selby.

Re: Newly diagnosed and confused about next steps

jelizpar.....I so much agree with your statement.  We must do our homework and determine the specialist best suited.  Number one question: how many patients have you treated.

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