Topic: Hello and Greetings to All from a new member

Hi all.
My name is Art and I have been diagnosed last month with late stage CC. Unfortunately the primary which blocked only partially the lower Biliary branch left no noticeable symptoms until a secondary grew big enough to cause a problem for my GI Doc in a routine colonoscopy. He got suspicious and called for a CT scan which lead to the diagnosis. Unfortunately the doctors claim that there may not be symptoms until late stages occur. More on this in another topic later.

A little about myself. I'm a 64 year old Physicist living in the LA area of southern California. I am fortunate to have a great wife and two wonderful sons a daugther in law and two grand chiildren. My sister and nieces and a bevy of friends provide a constant stream of concern and help.

I have been to City of Hope, UC Irvine Chao Cancer Center and I am being treated at a local Oncology group with connections to UCLA. I have just had my second chemo which is the only course of treatment open to me. The components are Gemcitabine (Gemzar) and Cisplatin.

In the mean time tissue samples have been sent to the UCI/Harvard/MassGen study to search for structural abnormalities in the tumor genetics. A chinese study originally estimated that 8.5% of the CC sufferers have the gene type abnormality of the study. Subsequent American studies now ongoing seem to show a lower occurance rate of ~2%. The good news is anyone with this gene marker may be   completely controllable with an oral administered drug. It takes 1 month for analysis of samples, 1 month to clear out toxins from chemo and then treatment can begin. The tissue type they are inspecting is an adenocarcinoma which is another selection element. The basis of the study is that this type of cancer is genetically identical to certain lung cancers that have been treated successfully with the drug of this study.

Since chances are slim for anyone to be an element of this group recognized therapies are started at once.

More on other topics where appropriate.
But again a hello to all.

Art

Re: Hello and Greetings to All from a new member

Art….a warm welcome to our site; I am sorry that you had to find us.  Thank you for sharing with us the study re: tumor genetics.  I hope very much for the test results to work in your favor.  Please keep us posted on the developments.  Art, what is interesting to know is that the genetics of the Asian population differs from that of the Caucasian population.  Hence, for example, we see different responses to various treatments.  The role of genetics will continue to be a focus of research, but at present we are in the beginning stages of discoveries.  This is my opinion only.
In the meantime we continue to look for positive responses with the available treatments for our cancer (in your case and that of many others) the Gem/Cis combination. 
Again, I am thrilled that you have found us. 
My best to you and to all standing by your side.
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: Hello and Greetings to All from a new member

Dear Art, welcome to our extraordinary family but sorry you had to join us. It sounds like you are doing all the best things for yourself and eventually we love to hear the words stable and shrinkage. You are lucky to have some amazing support from family and friends and to top that off a great attitude. Looking forward to hearing more from you on your progress, you have certainly come to the right place for support and caring!

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: Hello and Greetings to All from a new member

Hi Art,

WElcome to the site. Sorry that you had to find us all here but I am glad that you've joined us all as you have come to the best place around for support and help, and I know that you will get tons of both from all of us here.

Thats great that you have a large and loving family around you as they will all be such great rocks for you as you go through this. How is the Gem/Cis treatment going for you so far? We have tons of other members who have or are going through that regime also and I know that they will share their thoughts and experiences with you too.

Looking forward to hearing more from you and please keep us updated on how things go for you. And if you have any questions then just ask away and we'll do what we can to help in answering them.

My best wishes to you,

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: Hello and Greetings to All from a new member

Hi Art,

Welcome to the site. Nice to meet you but sorry it has to be here.

Lack of symptoms until late stages is, unfortunately, very common. Most of our members didn't have any symptoms prior to their diagnosis.

Art, you mentioned Chinese and American studies about one particular genetic abnormality. Can you share the links to these studies?

Welcome again. You came to the right place for support from people who truly understand what you are going through.

Best wishes,
Eli

Re: Hello and Greetings to All from a new member

Thanks for the quick greetings from Marion, Lainy, Gavin, and Eli.

As to Eli's question, All the info I have gotten on these studies comes from the work of Dr Ou at the Chao Cancer Center, UCI.

Two useful cites are:
1-
"ROS1 Rearrangements in Lung Cancer: A New Genomic Subset of Lung Adenocarcinoma", Pasi A. Janne et. al., Jan 3, 2012/JCO.2011.39.4197 available on line at
http://jco.ascopubs.org/cgi/doi/10.1200 … 1.39.4197/
2-
"Survey of Tyrosine Kinase Signaling Reveals ROS Kinase Fusions in Human Cholangiocarcinoma", Ting-Lei Gu et. al.  available on www.plosone.org January 2011 Volume 6 issue 1, e15640.


Hope these are useful and some subset of our community can be directly helped by these.


Best
Art

Re: Hello and Greetings to All from a new member

Hi Art,

A belated thank you for answering my question.

I noticed a short discussion of ROS-1 in this paper:

http://www.discoverymedicine.com/Daniel … t-cancers/

The paper mentions an ongoing clinical trial of Crizotinib:

http://www.clinicaltrials.gov/ct2/show/NCT00585195

I'm guessing your tissue samples are being tested to determine if you are eligible for this particular trial.

Best wishes,
Eli

Re: Hello and Greetings to All from a new member

Hello Art. 

Just wanted to welcome you to this site and as others have said sorry you had reason to find us.

Sounds like you are in good hands and you have a plan in place, two things that are critical when mounting the fight against this cancer.  I wish you the best with the results of your tissue test.

Best wishes,
-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.