Topic: New to this forum

My husband is the patient. It started in January 2013 with jaundice.  An endoscopic retrograde cholangiopancreatography was performed, and a plastic stent was inserted. The stent opened the bile duct and the jaundice gradually subsided. In February he had a CT scan of the pancreas.  The scan was not conclusive for a pancreas diagnosis.
A consult with the team at Seattle Cancer Care Alliance was conducted. Their diagnosis is Cholangiocarcinoma of the bile duct.  The team surgeon said there was no surgical option. The team medical oncologist said my husband’s options are: do nothing or do chemo. He recommended that the plastic stent be replaced with a metal one. [It has since been replaced with another plastic one.]
Further tests were conducted by SCCA: chest xray, an ultrasound and a liver biopsy. Review of these tests by the medical oncologist and the results are the same: do nothing or do chemo. The chemo recommended is Gemcitabine and Cisplatin.
We would be grateful to hear any opinions and suggestions. Thank you so much for your time.
Iris

2 (edited by PCL1029 Sun, 31 Mar 2013 21:55:44)

Re: New to this forum

Hi,
Do you know what stage of tumor,what part of the tumor located, is is inside or outside of the liver  or the tumor is located right under the liver when the bile ducts just exit the liver.?. Any metastasis in other organ like the lymph nodes, lungs,peritoneal and abdominal areas and the bones.? How big is the tumor or how many we're them? How old is your husband? Are you willing to travel outside Washington to seek treatment? Do you have HMO insurance or PPO.?
You should  get 2nd opinions by sending in all the CT computer disc and the written reports labs and stent procedure reports to Mayo Clinic or USC or Dr. Kato at new york Columbia / Pres. Hospital for surgical consult. of course if you can,  schedule a face to face appointment is much better than just paper work consultation. If it is nothing can be done. And the current GEM/CIS  chemotherapy don' t work after the next CT result, then you should get a 2nd opinion on oncology consult by M D Anderson down in Texas.
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 to this forum

Dear Iris, welcome to our remarkable family, you have come to the best place to be for CC. I so agree with Percy about a 2nd opinion, we are big believers in 2nd and 3rd opinions. If for not other reason then to validate what you are choosing to do for treatment. You are not alone with this now and please keep us posted on your husband's journey. Good atitudes help and Be Strong!

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 to this forum

Hi Iris,
By all means, get a second opinion - even a third. I'm disappointed that they sound like they are telling you to give up - throw in the towel - "do nothing or do chemo". I would find a doctor who was more interested in partenering with you and your husband to fight this awful disease. You can't know what a good fight will yield but you know what the result of quitting is. May God bless you and lead you through this...

bob

Re: New to this forum

Iris...welcome to our club - the one no one wants to belong to, but is glad to have found.  Iris, I agree with the others.  You would want to make sure to obtain a second or third opinion from a specialist "very" familiar with this cancer.  The major cancer centers see and treat about 100 to 150 patients per year with this disease; hence you would want to tap into the knowledge and experience of these physicians. 
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 to this forum

Hi Iris,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your husband. But I am glad that you've joined in with us here as you are in the right place for support and help, and I know that you will get a load of both from everyone here. I just wanted to stop in and say hi to you here and also to say that I also agree with what the others have said re seeking further opinions for your husband if you can.

Here is a list of major treatment centres in the USA that may be of use to you -

http://www.cholangiocarcinoma.org/major … enters.htm

And also another link that may be of help as well -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

We will help as best as we can and if you have questions please ask and we'll do our best to answer them. And please keep coming back here and let us know how things go for you and your husband. We are here for you and we care.

My best wishes to you and your husband,

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 to this forum

Thank you all. Your generosity of time and spirit is amazing. I will try to get answers to the specific questions. Right now I can say that the oncology surgeon at SCCA said it was inoperable, and how many surgeons want to admit to that?? Jim is 78 but you would never guess it...always active, including now. He starts chemo tomorrow.
Thanks again to all of you.
Iris

Re: New to this forum

Iris,
Sending my Best to your Jim as he starts chemo.
Willow

Willow

Re: New to this forum

Hi Iris,

I hope that Jim's chemo goes well when he starts it tomorrow. My fingers are crossed for him and please let us know how he gets on with it as well if you can. Stay strong!

Best wishes to you and Jim,

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 to this forum

Hello Iris,

I want to add my welcome to the site to all the others.  Sorry you had reason to join us here, but you are definitely in the right place for information and support.

I am a 3 year 4 month survivor of Extrahepatic CC.  I had a whipple surgery and 6 months of gemzar adjuvant chemo. I go for regular checkups and scans and so far, so good.

I can only strongly agree with others that a 2nd opinion (or 3rd) is always the way to go with this cancer.  I personally got 4 opinions over the course of my treatment.  Since it is so rare, it always good to get more experienced eyes on the case.

Good luck to you and your husband on this journey and please stop by and update us. 

-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 to this forum

I would get another opinion. I'm being see at MD Anderson in TX! Dr. Javle is my doctor, and I love him! A lot of people on here talk about him.
I'm stage 4, and my last scan showed no cancer. There is hope!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: New to this forum

Iris:
I strongly recommend another opinion, also. I went to Sloan Kettering in NYC for my second opinion and after battling for a year was told I would never be operable. I am currently changing doctors again after another year in hopes that fresh eyes and ideas will help.
Tiff has advised many people to contact Dr. Javle. I think he actually will give opinions over the phone or thru email if you can send him copies of all your tests and paperwork. His email should be somewhere in these forums.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to this forum

Wow!  Jim's story is so similar to Joanie's.  Thanks for sharing.  She started having symptoms in Jan 2013 as well.  (She is 67 in otherwise great health)  The team at Mayo had advised do nothing or chemo.  We are trying to figure out what to do as well.  Keep us posted.

Re: New to this forum

Get a second opinion. My friend was diagnosed about 60 days ago. His first doctor said it was inoperable and chemo and paliative care was his only option. Through this site I found Dr. Selby and USC/Keck and Dr. Selby said it was absolutely operable and he operated. Today my friend has no "visually detectable" cancer. They are giving him one round of followup chemo, just to be cautious, but there is no sign of cancer. For a doctor to say "inoperable," and not to even suggest the patient get a second opinion, is so wrong--and it happens all the time apparently. That has been my biggest surprise throughout my friend's experience. Needless to say, get anogther opinion, particularly with an oncologist and a surgeon who see lots of CC patients. It is a fairly exotic, and some doctors simply have more understanding, resources and options than others.

15 (edited by Lainy Sun, 07 Apr 2013 14:55:25)

Re: New to this forum

Dear Jackson, yea! Once again it proves how important that 2nd opinion is. Thank you so much for your friend's update. YIPPEE!  I like your description of CC as being 'fairly exotic'. Hoping your friend has a speedy and successful recovery!

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.