1

(0 replies, posted in Announcements)

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

7

(1 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

8

(72 replies, posted in Introductions!)

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

9

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

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

10

(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

11

(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

12

(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

13

(7 replies, posted in Members' Cafe)

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

14

(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

Attached are some relevant link pertaining to US Hospice:

Please remember that the American Cancer Society has professional cancer information specialists who are ready to talk with you about your concerns. They are available 24 hours a day, 7 days per week at our National Cancer Information Center. You can speak to one of them by calling 1-800-227-2345.

Who pays for Hospice Care:
http://www.cancer.org/treatment/finding … e-who-pays

Who provides hospice care?
http://www.cancer.org/treatment/finding … spice-care

What does hospice care provide?
http://www.cancer.org/treatment/finding … e-services

Where is hospice care given?
http://www.cancer.org/treatment/finding … e-settings

How do I find hospice care?
http://www.cancer.org/treatment/finding … ow-to-find

Choosing a hospice care program
http://www.cancer.org/treatment/finding … -questions

16

(7 replies, posted in Members' Cafe)

Kris....we missed you so much; so happy to hear from you. Although you don't much care for the job the fact that you were hired so quickly proves how (over) qualified  you are.  But, as you say it is a job and the income derived is very helpful.  Congrats, dear Kris.
Hugs,
Marion

17

(3 replies, posted in Chemotherapy)

jessrose.......agree with your attitude.  On it's own these markers are not given much credence but are taking in account with supporting scans, patient symptoms, etc.  Glad to are stepping back a bit and allow yourself to relax.
Hugs,
Marion

ooops...so sorry, I just now logged on.  We had a presentation today.  It was recorded and should be ready for viewing within day or two.
Thursday, August 21
Title:  Palliative Biliary Bypass Surgery
Presenter: Dr. Scott Celinski, Surgical Oncologist, Baylor University Medical Center, Dallas, Texas.
Time:
  Noon (PT)
• 1:00 PM (MT)
• 2:00 PM (CT)
• 3:00 PM (ET)

Yikes...6am?

20

(3 replies, posted in Chemotherapy)

Jess....I recall similar stories in where the CEA markers went on an upward trend and then (for no explainable reason)  went in the opposite direction again.  Perhaps the upcoming blood tests will show a clearer picture as well.
Hugs,
Marion

21

(15 replies, posted in General Discussion)

Forgot to mention one important point.  The Cholangiocarcinoma Foundation does not encourage others from establishing forums such as our however; the CCF logo is trademarked and therefore protected by copyright law.   Please do not duplicate or reproduce.
Hugs,
Marion

22

(15 replies, posted in General Discussion)

Kevin….a point well taken.  The purpose of this discussion board is addressing the enormous challenges patients and families face when affected by this disease hence, you are bound to come across postings not to your liking, but then that is indicative for any conversation you may engage with.
The nature of this forum is that of free expression encompassing all areas of experiences and thoughts.  This crosses over to scientific knowledge and quality information indicative of a disease frequently disabling, impacting quality of life, and the frequently life-threatening aspects of this cancer.   Due to the often times painfully honest discussions many are not able to participate on this site whereas others don’t like the expression of hopeful thoughts and suggestions presented. 
You must know that we, the foundation board members as well as the moderators are people from all walks of life.  None are experts in a clinical sense, but we are experts based on our experiences with this cancer.  This is not unlike physicians and researchers in that their opinion is their opinion based on various aspects of their career and it may or may not reflect that of another expert in the area of medical practice.  It is for that reason that we encourage readers or contributors to peruse the CCF home page for clinically sound information. 
We strive to be the best we can be and discussions such as these are very helpful.  It helps us make changes when needed without controlling or directing the process of free expression practiced on this site.

This is a good discussion and I much hope for others to chime in as well.
Hugs,
Marion

23

(15 replies, posted in General Discussion)

We have established this site more than 8 years ago and since then have built many personal relationships.  It is only natural for us to be protective of what has been part of our lives for some time now. 
However; I believe that any place that provides a supportive and safe environment for individuals and families makes living with Cholangiocarcinoma a less isolating experience.  It is for that reason that I believe we should unite and understand that some may find solace, support and interactions on venues other than ours.  Ultimately we want to be assured that everyone touched by this cancer connects with those of their liking.   
Hugs,
Marion

Gavin....what made me think you are a tea drinker only?

It was established by the Cholangiocarcinoma Foundation and it populated by many already known to you and many thousands that have joined in. 
https://www.facebook.com/cholangiocarcinoma