1

(7 replies, posted in Announcements)

Thanks everyone for your kind offer to participate in the interview for CURE Magazine.  The reporter has connected with Olympic1231 and has chosen to highlight her story.  Thanks a million, dear Connie.
We will keep everyone informed of the upcoming developments.
Hugs,
Marion

2

(7 replies, posted in Announcements)

Thanks much, Kris.

3

(7 replies, posted in Announcements)

Not sure as to when the article will come out, but have been encouraged to search out those that have had difficulty navigating correct diagnoses.  I should know more by Tuesday and will pass on whatever I learn.
Hugs,
Marion

4

(7 replies, posted in Introductions!)

Welcome.  I would like to add to what  Lainy, Gavin, and Melinda already have conveyed to you that you may want to consider perusing the following:

http://cholangiocarcinoma.org/the-disea … diagnosed/

Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/


Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/

Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

MD Anderson has a robust Biliary Department; don't be afraid to ask for patient friendly interpretations of the medical information.  And, if you can either tape record (some institutions won't allow hence, ask beforehand) or rely on taking notes. 
Good luck and please keep us posted,
Hugs,
Marion

http://cholangiocarcinoma.org/webinar-p … carcinoma/

Take a look at our latest presentation
http://cholangiocarcinoma.org/webinar-p … carcinoma/

7

(6 replies, posted in In Remembrance)

Markssis.....my heart goes out to you and your family In this trying time.  Please know that we are here for you, always.
Hugs and love,
Marion

AngelMar......so glad to hear from you.  The BILCAP trial should  close by 30/09/2014.   The phase III trial data is very much awaited and of great interest not only to the patients, but for the physicians as well.  When you have a chance and feel up to it please share a bit more with us.
In the meantime I hope for you to get plenty of rest and for your energy to return real soon.
Hugs,
Marion

Hmmm....why is that that I am hungry?  Sounds delicious.
Hugs
Marion

10

(7 replies, posted in Introductions!)

Vicky.....a warm welcome from me to you as well.   The many support groups established do not address this cancer hence, it can be very lonely for the patient as well as to the caregiver.  The good news is that you have found us and you don't have to feel isolated.  We understand, we have been there, we are here to help and we are with you all the way.
Hugs,
Marion

11

(18 replies, posted in General Discussion)

I don't have the answer perhaps someone can provide.  Don't hesitate from reaching out to Nasra:
Giama.Nasra@mayo.edu
Hugs,
Marion

Today I completed a preliminary interview with a reporter from Cure Magazine; we are hoping to highlight our cancer in on of the upcoming publications.  The report will focus on the difficulties of diagnoses, length of time to final diagnoses, and current development.   Other than your name, no other personal information is requested.
For those interested in participating please be so kind an get back to me asap.  Interview with individual must be completed by Tuesday, next week.
You may either respond on this discussion board or, if you so prefer send an e-mail to marion.schwartz@cholangiocarcinoma.org.

Please be so kind and consider participating in this worthwhile cause by sharing  your story with  physicians and patients alike.

Thanks and hugs,
Marion

Julie....YOU DID IT.....this has not been an easy road for you - so thrilled to know that you have conquered it.  Congratulations.  May each and every day bring be a better one than the last.
Hugs,
Marion

APK.....You have been missed on this board and yes indeed it is excellent news,  thanks for sharing it  with us.  Personally I like to compare this cancer to that of a chronic disease and as long as there a positive responses to treatment we can expect things to look up again.  So glad your shared with us and all my best wishes are heading your way.
Hugs,
Marion

Darlene......you might want to  consider Biotene mouthwash and gum.  Also, are you taking enzymes prior to meal?  Additionally, regular bowel movements are important as well.  Don't worry, we talk about this openly.  And, drink, drink, drink in order to flush the chemo through your system.
Hugs,
Marion

Darlene.......I do want to mention  that the diagnoses of this cancer is rarely suspected.  Most physicians never have come in contact with this cancer which very much mimics that of gall bladder disease.  Therefore, your story is like that of many others - rare cancer - no one suspects it - physicians unfamiliar with this cancer -  mimics other diseases.  The good news is that it was found and you have treatments options available to you.  Good luck on the upcoming scan.
Hugs,
Marion

Darlene......I would like to follow the others and welcome you to our site.  Not sure why the oncologist reacted the way she/he did but for this disease in particular you would first want to obtain surgical opinions and that opinion should come from a physician "very" familiar with this cancer.  You did what was the right thing to do, Darlene.
Below are the guidelines set forth by the Cholangiocarcinoma Foundation and can be found on the home page:  Patients and Caregivers, tab: Newly Diagnosed.

"Cholangiocarcinoma can be difficult to both diagnose and treat. If possible, newly diagnosed patients should go to a major cancer center or medical institution that provides cholangiocarcinoma patients the option to have their specific case seen by a tumor board and/or multidisciplinary team before receiving any kind treatment. A tumor board consists of a medical oncologist, surgical oncologist and a radiation oncologist – this team would jointly view your medical records making a recommendation for the best course of treatment for each individual patient. A multi-disciplinary team consists of the above (a medical oncologist, surgical oncologist and a radiation oncologist) plus any or all of the following: Interventional Radiologist, Advanced Gastroenterologist, Cancer Registrar, Genetic Counselor, Clinical Trial Coordinator. It is very important to find a doctor and team who is experienced in treating cholangiocarcinoma. "

Don't have much to add to the wise responses received from Gavin, Lainy, Julie, Duke and Melinda other than that you are in the right place for support and caring.   We are in this together.
Hugs,
Marion

18

(7 replies, posted in Introductions!)

In addition to receiving a warm and caring welcome from the fantastic members of this discussion board you may also want to peruse the Cholangiocarcinoma Foundation home page for additional information:
http://cholangiocarcinoma.org/
scroll to: Patients and Caregivers
Tabs include:  Newly diagnosed etc.

We are in the process of completing and updating  the information on the home page therefore; please check back periodically.

Hugs,
Marion

19

(72 replies, posted in Introductions!)

Duke...ditto on Lainy's comments.  You address issues with sensibility, caring, and insight. 
Hugs,
Marion

20

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

Ilias....how cool it is to hear from you.
Hugs,
Marion

21

(72 replies, posted in Introductions!)

Olga...I believe you are talking about the Mayo Clinic Research Study:
http://cholangiocarcinoma.org/professio … nic-study/

I did not want to mention it at this time however; the fact that both your husband and his sister have been diagnosed with this disease is rather perplexing.   One wonders: is there a genetic predisposition or is it by chance only? 

Anyway, know that my heart is with you in this difficult time and please reach out to us for anything we may be able to provide.

Hugs,
Marion

22

(4 replies, posted in Chemotherapy)

asc....Percy's extensive research on drugs used for the treatment of this cancer included comments on Gemcitabine (Gemzar).   It may be of help to you.  Here is the link:
http://www.cholangiocarcinoma.org/punbb … =688247561

From a laymen's point of view I am wondering why the treatment has been suggested?
Hugs,
Marion

23

(72 replies, posted in Introductions!)

Olga...words fail me.  I am so sorry to hear of the newest developments - my heart goes out to everyone involved.  I too question as to why such tragedy can touch your family in such a way.  My wish for strength and hope wrapped in tons of love is heading your way.
Hugs,
Marion

24

(7 replies, posted in Members' Cafe)

Good point, Karen.  I too wonder what "normal" is, perhaps we set our own standards.
Hugs,
Marion

25

(4 replies, posted in Adverse Reactions & Side Effects)

Sharon.....We have numerous postings regarding rigors.  By entering the word "rigors" in the search function many discussions will appear please, be aware as some may be disturbing to read.  When not related to an infection, these shaking episodes (not always accompanied by a fever) generally last a short time  and then miraculously disappear.  Our nurse mentioned   that rigors are caused by tumor or cancer affecting the nerve endings; perhaps someone can give us a more detailed, clinically sound information.
At onset of the rigors I would wrap my husband in a warm blanket and hold him tight (as tight as possible - at times I would lay on top of him)  until these annoying symptoms would disappear.  It is scary to experience, but with time you become used to it and simply wait it out.   
Hang in there, dear Sharon, this cancer throws curveballs and this is one of those.
Hugs,
Marion