1

(2 replies, posted in General Discussion)

Pat....thank you.  There is a never ending learning curve with this cancer and we try our best to keep all informed.  Like you I believe that they more we know  the better we understand  if and when we need to make important decisions.  Always happy to hear from you, Pat.  You too contribute so much to our site.

Hugs
Marion

2

(2 replies, posted in Introductions!)

604son.....welcome to our special group.  Already you are quite familiar with this cancer, but I would like to emphasize the importance of a second, professional opinion from a physician treating a high volume of cholangiocarcinoma patients.  Being that you are on the West Coast and somewhat close to Calgary University, you may want to reach out to Dr. Oliver Bathe.  He has vast experience with this cancer not only as a surgeon, but as an oncologist as well. 

You are correct in valuing the collective wisdom of our members.  It's important to learn about this cancer and where best can we obtain this information then from those experiencing the disease. The US in particular is encouraging patients and caregivers to become actively involved in all aspect of their healthcare.  This includes the NCI Office of Advocacy Relations, FDA and others government and non-government institutions. 

Please know that this is a difficult disease, but given the current, various treatment option, unlike the previous years, many patients outlive their original prognosis by months or even years. 

I am sure for others to chime in and welcome you to our site.

Hugs,
Marion

3

(83 replies, posted in Introductions!)

tiah....I believe 3 months post SIRT is the minimum required. Good luck with the upcoming oncology visit, which I hope will bring about the next step of action.

Hugs
Marion

Biliary management of CCA patients is not adequately addressed by the medical community.   It will be one area of focus at our upcoming conference in Utah.   Surgeons, oncologists, pathologists, nurses and advocates  will work together to establish tools for quality, effectiveness and efficiency in biliary management.  I hope it will then be adapted and integrated in the NCCN guidelines. 

Hugs,
Marion

5

(1 replies, posted in General Discussion)

A gene is the basic physical and functional unit of heredity. Genes, which are made up of DNA, act as instructions to make molecules called proteins. In humans, genes vary in size from a few hundred DNA bases to more than 2 million bases. The Human Genome Project has estimated that humans have between 20,000 and 25,000 genes.

READ MORE:  https://ghr.nlm.nih.gov/primer/basics/gene

6

(0 replies, posted in General Discussion)

DNA, or deoxyribonucleic acid, is the hereditary material in humans and almost all other organisms. Nearly every cell in a person’s body has the same DNA. Most DNA is located in the cell nucleus (where it is called nuclear DNA), but a small amount of DNA can also be found in the mitochondria (where it is called mitochondrial DNA or mtDNA).

TO READ MORE USE THIS LINIK:
https://ghr.nlm.nih.gov/primer/basics/dna

7

(2 replies, posted in General Discussion)

Cells are the basic building blocks of all living things. The human body is composed of trillions of cells. They provide structure for the body, take in nutrients from food, convert those nutrients into energy, and carry out specialized functions. Cells also contain the body’s hereditary material and can make copies of themselves.

Cells have many parts, each with a different function. Some of these parts, called organelles, are specialized structures that perform certain tasks within the cell. Human cells contain the following major parts, listed in alphabetical order:

PLEASE USE THIS LINK:
https://ghr.nlm.nih.gov/primer/basics/cell

This provides a great up to date overview of our cancer and answers many of the questions you may have about cholangiocarcinoma.  You must click on the below mentioned links:
Description
Frequency
Genetic Changes
Genes
Inheritance
Diagnoses and Management

https://ghr.nlm.nih.gov/condition/chola … cesforpage

Thrilling to see the attention given by the NIH.

Cancer Legal Resource Center offers a free to attend webinar:

5 Tips for Caregivers of Cancer Patients

Find out what your rights are under the Family and Medical Leave Act (FMLA), the federal law that provides caregivers with options for taking time off work, and learn about additional protections available under state law. and about other issues involving caregivers, such as SS survivor benefits, probate, advanced healthcare directives, etc.

Register for free:https://attendee.gotowebinar.com/register/219072568647829505

Anyone attending?  Please be so kind and share with us the information received.

Thanks much,

Marion

Kris.... what is it that you can eat? 

Hugs,
Marion

11

(5 replies, posted in General Discussion)

whatnow....here we go:

Regular IV catheters

A regular IV catheter is a tiny plastic tube about an inch long with a plastic hub. A needle is used to put the catheter into a vein in your forearm or hand, and then the needle is removed, leaving the catheter in the vein with the hub outside the skin. A regular IV catheter can only stay in for a few days, at most, so if you need to be treated over weeks or months, you will need many IVs.

What’s a port?

A port is a type of central venous catheter. It also called an implantable venous access port. It’s a small drum made of plastic or metal with a thin tube (called a line) going from the drum into a large vein. Ports are permanently placed under the skin of the chest or arm during surgery. The drum has a silicone septum (self-sealing membrane) across the top and special needles are stuck through the skin into the septum to use the port. Single and double ports are available. A single port is shown in the picture below; a double port looks like 2 drums attached to each other.

Additional explanation can be found here:
http://www.cancer.org/treatment/treatme … -catheters

Good luck on Thursday. 

Hugs,
Marion

Your Mom has valid concerns. 
This link will lead you to the outcome of the ABC-3 study: Cisplatin plus Gemcitabine
http://www.nejm.org/doi/full/10.1056/ne … #t=article
Ultimately it comes down to making a decision of unknown outcome and although no one can predict how your Mom will fair with treatment, she does however have the opportunity to withdraw at any time.  Buying time is important, we don’t know what other available options await us.  There is the risk of reducing quality of life, but how do we know unless we try? 
I know that your Mom will make the right decision.

Hugs,
Marion

Alicia.....I can't answer the AHCC powder question however; make sure to tell physician of everything your mum is adding to her diet.

Hoping for others to chime in on this.

Hugs
Marion

The Medicare language is clear.
Note: Insurance companies use Medicare when determining their guidelines.

https://www.medicare.gov/coverage/clini … udies.html

15

(6 replies, posted in In Remembrance)

Sharon......although their are plenty of signs preceding, always, always we hope for a better outcome.  My heart goes out to you and your family. 

Your decision to stay on to help others find answers and support those that need it is of immense value to the choangiocarcinoma community in the US and abroad.  Thank you for your kindness, it is means much to us all.

The Memorial run for Phil is a wonderful idea,  I so much wish to participate.  I found that doing something (whatever that may be) helps us in the healing process.

Not sure whether you need guidance or support from the Cholangiocarcinoma Foundation, but just in case, here are two links that may be of use to you:

CCF Guide to Fundraising:  http://cholangiocarcinoma.org/wp-conten … e-2014.pdf

and the Fundraising Sign-Up Form: http://cholangiocarcinoma.org/get-invol … n-up-form/

In any case, we like to highlight these events on our social media, including the discussion board:
http://www.cholangiocarcinoma.org/punbb … .php?id=29

Thinking of you and sending a tidal wave of hugs your way,

Marion

Fred....I am sorry to hear this.  Resections provide the only path to a cure, however not always does it stop the cancer from returning.  Biliary surgeries are extremely difficult to perform and one hopes that only the best of experts attempt these type of invasive procedures.  The good news is that only one of the four previous drains is now achieving adequate drainage.
Peritoneal metastasis from cholangiocarcinoma ae not uncommon, but I would not jump to conclusions and  await the outcome of the results.
I don't know whether your son has discussed molecular testing on his tumor tissue, but I would consider doing so.  It allows for an additional choice of treatment should metastases be confirmed.

I am sending all my best wishes your way,

Hugs
Marion

17

(3 replies, posted in Clinical Trials)

Perhaps you can discuss with Dr. Zhu the outcome of the Phase I study of this drug.  This in turn will help you understand the rationale for the Phase II trial.

Is anyone else participating in this trial?

Hugs
Marion

18

(4 replies, posted in Members' Cafe)

The decision is made by the CCF board of directors with input from the medical advisory board.

Hugs,
Marion

Brian and Barbara.......here is a bit more information on the trial:
https://moffitt.org/clinical-trials-and … ial-18435/

We know that gem/cis showed an average of 8 months overall survival.  I am trying to find the preceding Phase I study results.  Hoping to have that answer real soon.

Hugs,
Marion

20

(4 replies, posted in Members' Cafe)

Randy.....I thought you might be happy to see Dr. Hezel chairing our upcoming conference.  We are thrilled too.  I also want to point out that the conference includes a patient/caregiver day.  Perhaps you and and everyone out there could consider participating in this event. 
Patient and Caregiver Session:  Februay 1, 2017
http://cholangiocarcinoma.org/misc/2017 … onference/

Hugs
Marion

21

(3 replies, posted in Clinical Trials)

Vallerina....is this the trial? https://clinicaltrials.gov/ct2/show/NCT02428855

Hugs,
Marion

22

(4 replies, posted in Announcements)

Thanks, Rick.  Worked for me with a different browser.

23

(2 replies, posted in General Discussion)

grsharp....thanks for posting. This is important information to pass on. 
Thanks much,
Hugs,
Marion

Vallerina.....thanks for sharing with us and wish for success with the current treatment.  I would however continue to engage with the physician regarding a future clinical trial.  Perhaps he/she can explain to your father the viable option of participating in a clinical research study.  Good luck.
Hugs
Marion

25

(5 replies, posted in Introductions!)

deadlift.....As mentioned by Debbie, welcome to our special group of people touched by this cancer. Sorry for the information overload, but the nuances of this disease as well as the various treatment options can be complexing and difficult to understand. 
Most likely you already know that biliary stents can clog and must be replaced frequently.  (I assume your wife has a plastic stent.)  Try to take her temperature (daily ) and call the physician with the first sign of a fever.  If physician is not able to get back to you then you should not delay a trip to the hospital, as an infection can be serious and must be avoided. 
Our lives take on a different meaning with the diagnosis of this cancer.  I understand why you feel like a single Dad, as everything has changed.  I am crossing my fingers for a great September report.
Please stay with us, dear deadlift.  We care and we are in this together.

Hugs,
Marion