Lainy.....unfortunately CCA mimics that of others and given the rarity of occurrence, physicians may not suspect or are not aware of this cancer.
We are working on addressing this issue in various ways and will design a concrete plan by the beginning of next year.
Hugs,
Marion

Thanks, Gavin,  We know that early detection is the key to this disease.   GP's are the first to take note of patient's symptoms and that is where the breakdown occurs.
Hugs,
Marion

3

(3 replies, posted in Good News / What's Working)

Kris.....so happy to hear from you.  Mark's results are fantastic - what great news.  Wish you did not have to become semi disabled to finally slow down a bit.  Promise to take it easy and please recover quickly.
Hugs,
Marion

angel-mar......good luck. Personally, I believe that Integrated Medicine should be incorporated in the treatments for cancer.  It has always been part of Europe's approach to illnesses, the US is lagging far behind.
In my personal case, my husband's treatment included mistletoe injections.  No scientific answer as to the efficacy in his case, but no harm was done and we felt that all resources were explored to the utmost.
Please keep us posted.
Hugs,
Marion

5

(7 replies, posted in General Discussion)

Nicole...excellent response to treatment.  Looking forward to continued positive treatment response.
Hugs,
Marion

marco..... I don't have an answer , but did you know that  Accuray (maker of Cyberknife) has a forum to which you can direct your questions!  I entered the word "liver" and came up with this:
http://www.cyberknife.com/Forum.aspx?g= … amp;f=2580
Good luck, dear Marco, and please keep us posted.
Hugs,
Marion

Kate...... Clinically, many tumors respond well to chemotherapy exposure however; as it so happened with your Mom, sooner or later drug resistance occurs.  Until others have a chance to respond with their personal experiences with "Xeloda" you might want to take a look at this:
http://www.cancerresearchuk.org/about-c … pecitabine
Additionally, when entering the word "Xeloda" in the Search Function, many other postings will appear.
Good luck and please keep us posted.  We care.
Hugs,
Marion

8

(43 replies, posted in In Remembrance)

Hans.....Kris's legacy left footprints a in our hearts and minds - she will never be forgotten.   One of the most endearing qualities you and Kris had shared was the absolute honesty and frankness in  your approach to life and this cancer. 
All my best wishes to you, dear Hans, for a happy and successful life. 
Hugs,
Marion

surfer.....Not sure what I would do either, but Percy came to mind.  He was a big proponent of ablation, hence thought to enclose this link:
http://www.cholangiocarcinoma.org/punbb … 582#p84582

You might also want to use the "search" function and see what else may pop up. 

Postings have a tendency to get lost in the particular threads - don't hesitate from reposting this question as many times as needed.
Hopefully others will chime in as well.

Hugs,
Marion

In memory of Andrea, Scott has offered anyone to sign in to her Caringbridge website.  http://www.caringbridge.org/visit/andreascott
password: "fighting"

Not sure when Jason will visit this site again, but don't hesitate from reaching out to him via this thread.  We will make sure to forward your comments.

Rest in peace, dear Andrea, we will never forget you.

Marion

marco.....you might want to ask the physician.  Perhaps it the new lesion is vascular. Has  a repeat cyberknife procedure been ruled out.  You would want to know. 
Hugs
Marion

Soujourne......a warm welcome to you.  You have come to the right place for support and sharing of information.  I can't think of a better group of people then those you will encounter right here, on the discussion board.

As we have learned and you have experienced, not everyone is able to undergo surgery for this cancer.  As in your husband's case, other treatment options are available.  Happy to see that he is faring quite well with chemotherapy and I wish for all good things to continue.



This site offers a good amount of information especially for those newly diagnosed:
You may want to take a look at these links:
Newly diagnosed:

http://cholangiocarcinoma.org/the-disea … diagnosed/
and the free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/

For an entire overview, you may want to take a look at the home page:
http://cholangiocarcinoma.org/

I am sure that others will share their thoughts with you as well.  Please know that weekends are less visited, but be assured that others will chime in real soon.

Hugs,
Marion

13

(3 replies, posted in Good News / What's Working)

Randi......great news and so thrilled to see back on our site.  You are so right, Randi, patients must understand their illness and not hesitate from questioning the physician, who will want our best, but at times may need to take a look at us from a different angle.
Hugs,
Marion

14

(8 replies, posted in General Discussion)

erine.....I hope that others will come forward to share their experiences with you in regards to this important subject.
From my experience and what I have learned "Paracentesis" a procedure to remove fluid that has accumulated in the abdominal cavity is that of a palliative treatment.  Perhaps your mother in-law will agree to this procedure because; it instantly will increase her comfort level.   
Please stay in touch,
Hugs,
Marion

15

(4 replies, posted in General Discussion)

Duke....which participating center have you called?

16

(15 replies, posted in Introductions!)

Nola....I share your happiness.....excellent report.  So glad that Neil can have his hernia operation and looking forward to feeling better all the way around.
Hugs,
Marion

The recorded session will be on the website within a few days.  Follow-up questions can be posed on this site and will then be forwarded to Dr. Kato. 
Don't worry Porter, You will be heard
Hugs,
Marion

http://www.ncbi.nlm.nih.gov/pmc/article … S0003title

we will provide an updated version as soon as publically available.

Porter.....I made note of your latest question.  Glad you reached out to Dr. Giles.  He is an invaluable resource to our members. 
Don't worry Porter for not attending the life presentation.  As always it will be recorded.  Have a good day.
Hugs,
Marion

20

(9 replies, posted in General Discussion)

We have hundreds of postings on scan-anxiety and recurrence anxiety.   Even though we can compare this disease to that of a chronic illness, with it comes a chronic threat as well.   
I recall a similar thought our very own Dr. Giles had commented on:
http://cholangiocarcinoma.org/ask-dr-gi … ie-de-vie/
You too may want to reach out to Dr. Giles.  He is here for us, gives great advice and it is "free" of charge as well.
Here is the link:
http://cholangiocarcinoma.org/for-patie … -dr-giles/
Give it a try.
Hugs,
Marion

21

(187 replies, posted in Hospitals)

Hi all,

thought to revive this important thread again.  It is established by members like you and is for the benefit of all.

Thanks and hugs,
Marion

angel-mar.....there is a good chance that Xeloda will be considered again unless of course you have reached drug resistance.
Hugs,
Marion

No reason for an apology, Duke.  What Matt is questioning (as are you) is the reasoning behind the decision to remove a tumor although, the cancer is metastatic.  Some surgeons do so whereas others do not. 
Please let's make sure to attend this web presentation.  I will be one of the panelists sorting  through the questions prior to submitting it to Dr. Kato, following his presentation and those questions received during the live event. 
Hugs,
Marion

surfer....I too  hate cancer.  The good news is that the recurrence is located in an area accessible with pinpoint radiation.  The intent of this treatment is to eradicates the lesions in it's entirety.  If there are no other signs of this disease, then it is unlikely for the physician to recommend any other treatment.   Please know that everything mentioned by me must be validated by a physician.
Hoping for others to join this conversation as well.
Good luck and please keep us posted.
Hugs,
Marion

Matt....excellent questions.  Would you like to forward it while attending the presentation (my preferred choice) or, would you like me to address it in the question and answer period following the presentation?  Either way, I will make note of Porter's and your questions.
Hugs,
Marion