Tagged: Our story ...
July 31, 2014 at 11:22 pm #83923darlaParticipant
Thanks to all of you. Duke for the posting and Marion and Rick for making it a “Sticky”.July 31, 2014 at 8:22 pm #83922
Duke….I appreciate your effort and honesty in the posting. Patients like you are the voice of this disease and the discussion board is to encourage all to share thoughts, ideas and experiences amongst the CCA community. We are in this together and together we need to make a better world for all touched by this cancer.
MarionJuly 31, 2014 at 7:53 pm #83921dukenukemMember
It started out for me as a way to put things together, then expanded. Sat on it for a while to let some of the seeds germinate. Expanded again, then decided to post. I could spend more time (one thing I have lots of) but I wanted to hear what you have to say. If I misstated something, that’s easy to fix and needs to be fixed. If you have a different opinion, go for it. That’s what makes this site so strong. I just checked – 3157 registered users; 24 in July alone. That means people are not just passively monitoring, they see value in participating. That’s what I hope this post will do – convince people to participate by giving them an idea in one place what we are all about. Then we can go about what we do best – listen and help our new family members.
Thanks for your support.
DukeJuly 31, 2014 at 7:08 pm #83920
Voila…Rick has added a “sticky” to this thread. Thanks much, Rick.July 31, 2014 at 5:20 pm #83919gavinModerator
Thanks loads for this Duke, I know that it will be of great help to all of the newcomers to the site. And being that we get many who lurk and don’t post, it will be of great help to them as well!
I’ll have another read of this and if I can come up with any thoughts or stuff to add I’ll post them here on the thread. Hopefully we will get lots of input on this and that the thread will get stuck to the top of the introduction section too.
Thanks again Duke!!
GavinJuly 31, 2014 at 5:15 pm #83918
Duke….no one can do it like you have done. (you know the background to my comment)
This is a very important thread for others to follow.
Thanks a million.
MarionJuly 31, 2014 at 3:54 pm #83917darlaParticipant
Good Job Duke! Maybe this could become a “sticky”.July 31, 2014 at 3:24 pm #83916lainyParticipant
Duke, what a great post my goodness you must have spent hours on this. Very thoughtful and full of information, wish there was someplace we could keep it out front or recirculating. Great!!!July 31, 2014 at 3:00 pm #83915iowagirlMember
Well done, Duke. This should be a must read clickable on the Green Line IMO.July 31, 2014 at 7:23 am #10381dukenukemMember
I started this in July, 2014 and am reorganizing to flow better and adding a little and clearing out some dead wood.
Welcome to the amazing family no one wants to be part of. The fact that you are here likely means that you or someone you love has been diagnosed with cholangiocarcinoma (CCA). You’re scared / angry / confused. Your life has changed forever. But you have a lot to say about what the changes are and what can happen. You will be faced with many decisions. Do this? Do that? Do nothing? And after each decision there will be more. The participants of these Discussion Boards are here to listen to you and we will provide our experiences and thoughts. But, we are not doctors – we cannot provide medical advice. We cannot make your decisions for you. This disease puts you on a roller coaster. Believe it or not, there are highs that will take your breath away. And the lows will almost crush you if you let them. Call out to us for help when you need it. Hope, faith, and prayer help. This is a disease, not a death sentence. We don’t come with an expiration date. (KrisJ, KrisV, Lainy) “Cancer will not run my life! Cancer will not define me!” Judy Nemes in “Coping with Cancer” September 2013.
If you read nothing else, read this.
Check the expertise of your medical team. This is a relatively rare form of cancer. Not all doctors have dealt with it. Not all oncologists have treated it. Get specific information on their knowledge. THERE IS NO SUBSTITUTE FOR EXPERIENCE. Good doctors will understand and answer your questions. Be wary of doctors who do not. In any case, strongly consider getting a second or third opinion. This is where your journal and notes will come in handy. Make sure you have a complete team, not just an oncologist. You need an interventional radiologist to determine if a radiation therapy is called for and a liver specialist to determine if surgery is indicated. Expect there to be a tumor board of some kind to review your case and proposed therapies. Don’t rely only on the oncologist. Get answers about how they will determine your treatmetn options. Be wary of cookbook answers. Not all forms of cholangiocarcinoma are treated the same. Staging at diagnosis also helps determine (and sometimes limit) treatment options. For more on staging and treatments go to
If you suspect that you are not getting the right help, come here as soon as you can and ask for advice. The most likely recommendation will be to get second opinion with additional specifics. You will hear that recommendation over and over.
There are members world wide. Someone is likely to be familiar with issues and will provide opinions about your location.
If you’ve checked the Internet you will have found scary numbers associated with survival. Remember that they are based on old data. Advances are being made frequently, improving treatments and extending life expectancy and quality. You have more control than you might think. Besides (and maybe even more important than) your medical team there is your attitude. You have to develop a positive attitude as soon as you can – like starting now. Cholangiocarcinoma sucks. Damn right. Accept it. Get over it. Explore your options. Do all those things you should be doing anyway – exercise, eat right, get medical help. Get on with your life. It may not be as long as you thought yesterday it would be, but it’s what you’ve got. Make the rest of your life the best you can. If you’ve got it, done it, seen it, heard it, read it, chances are one of us has also. Post a question or a comment or vent or ask for help. We listen and will do our best. That’s what families do.
Overall outlook from what I understand. Everyone is different and not all tumors respond the same. Some people are more tolerant of chemo than others. I am very tolerant and grateful. Others have nasty side effects, like nausea. The best results occur when the cancer has been diagnosed early, before metastases have occurred and the tumor is small. Surgery or liver replacement is a solid option, followed by adjuvant therapy and possible more surgeries. If the cancer has moved to other organs, example lungs and lymph nodes, you might be receiving palliative care. The objective of palliative care is to improve the quality of life. You might have to choose quality of life or length of life or some balance. This will likely be the hardest decision you will ever have to make. We can share our decisions with you – they run the entire spectrum. Most people agree that there is no wrong decision.
Here is a link to a PowerPoint and Webinar presentation “Update on Cholangiocarcinoma – What we have learned from the International Hepatobiliary Neoplasia Biorepository” from the Mayo Clinic sponsored in part by the Cholangiocarcinoma Foundation.
Link to a video that describes the three types of cholangiocarcinoma.
Quick checklist of things to do.
Keep a journal of who you talked to, date/time, subject, and specifics. Same for tests and treatments. Keep copies of all tests and doctors notes. It’s easier to start this right away than to go back and get it. Keep them in a computer file as a pdf record. Write down what you are feeling and thinking.
Info about these Boards
Register for the Discussion Boards. It allows you to actively participate and ask questions. If anonymity is an issue for you, don’t include your last name.
In your posts, provide all the info you are comfortable with. Symptoms, diagnoses, age, treatments, medical centers, doctors names, dates, CA 19-9 and alkaline phosphatase numbers, location(s) of tumors, etc. The more you share, the more we can help. This will be one of your decisions.
Use the Search feature listed at the top of this web page. You can look for specific medical centers, doctors, symptoms, treatments, and a whole host of other items. One of the Discussion Boards is labeled “Hospitals”. It has a wealth of information. No whitewash here, either. Some of the more frequently mentioned ones (in alphabetical order) include
Barnes-Jewish Hospital (St. Louis)
MD Anderson (Houston, not Phoenix)
Memorial Sloan Kettering
Moffitt Cancer Center (Tampa)
Virginia Mason (Seattle) [ (University of Washington Medical Center?)]
There are many more mentioned in the Board.
Find out all you can about the disease and treatments. There are Discussion Boards called “New Developments”, “Clinical Trials”, and “Websites” which provide frequent updates of cutting edge technical info. Look at these often.
Check out the “Boards Good News / What’s Working” and “Members’ Cafe”. The latter is a great place to let your hair down, not just about cholangiocarcinoma but about the stuff life is made of, like the World Cup, the Super Bowl, the Packers and the Bears, and loved ones.
Get the 100 Questions & Answers About Biliary Cancer eBook. A free e-Book can be downloaded to a computer, iPad, or e-reader such as Kindle or Nook. Instructions can be found under About the Foundation / Foundation News / Printed Resources. There is a section in the eBook on terminology that is also valuable.
On the Home Page, click on “Patients & Caregivers” then “Webinars” (located under “Education”. Great stuff here.
Take time to explore – there is lots more that I have not mentioned. Keep track of where you are so you can find it again. Create Bookmarks to get back to important things.
New technical information comes out at least once a week. Personal info daily. Check in often.
A couple of shortcuts.
1. When you Login, check the Remember Me box. This will automatically log you in in the future. Do this only on a computer/device you control, not a public one.
2. When you Login, look for “Recent Posts” on the right side near the top. If you click that it will list all posts made since the last time you logged in. Easy-peasy way to get to the new stuff quickly.
Other things to do.
Google your own state for more info on these next two documents.
Durable Power of Attorney for Health Care. A health care power of attorney (or durable power of attorney for health care, sometimes known as a DPOA or health care proxy) is a legal document that authorizes another person (your agent) to obtain your health information and to make health care decisions for you. You can allow your agent to get your health information and communicate with your health care provider at any time, but health care decisions can be made for you only if and when you cannot make health care decisions for yourself.
Living Will Declaration. A living will is a legal document you can use to set forth your directions about the use or non-use of artificial life-sustaining support if you become terminally ill or permanently unconscious.
Complete the CCF International Cholangiocarcinoma Patient Registry (ICPR).
Go to the Foundation website Home and click “Patients & Caregivers” then “Registry” under “Research”. Then “Click here to Register for the C.U.R.E.”
It takes 15-30 minutes to complete. Make sure you have as much information as possible before you start. There are very specific questions about your (and your family’s) history.
From the Registry (ICPR) website:
“The International Cholangiocarcinoma Patient Registry represents a collaborative effort and opportunity, for The Cholangiocarcinoma Foundation, to connect with our larger global patient community to further knowledge of cholangiocarcinoma.
The Mission of the International Cholangiocarcinoma Patient Registry is to assist, accelerate and support research into earlier and more comprehensive diagnosis; life-extending therapies and treatments; new and repurposed drug trials; protocols and medications addressing debilitating treatment side-effects; possible end stage complications; and ultimately efforts leading to a cure.
The Vision of the International Cholangiocarcinoma Patient Registry is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The International Cholangiocarcinoma Patient Registry will also assist in the screening of appropriate participants for research studies and clinical trials.
Patients who may be appropriate candidates for studies and/or clinical trials will be contacted by the International Cholangiocarcinoma Patient Registry Coordinator and provided with the contact information. If the patient is interested in participating in the research he or she may then then may contact the study/trial coordinator for more information.
Researchers applying to use the encrypted data maintained in the International Cholangiocarcinoma Patient Registry for data analysis, and/or to help identify potentially appropriate patients for clinical trial recruitment, may submit a Letter of Intent (LOI) to the International Cholangiocarcinoma Patient Registry Coordinator for review. The LOI should provide an overview of the proposed research or trial synopsis.
Our Values are centered on patient privacy and our commitment to confidentiality. Participation in the International Cholangiocarcinoma Patient Registry is entirely voluntary. All patient information will be encrypted, de-identifiable, and maintained in a secured database. Participation in any research study and/or clinical trial is also completely voluntary and at the discretion of the patient.
Participate in the Mayo Clinic study. There are a few discussion threads on this that are easiest to find with the Search tool. One is under General Discussion – Mayo Research Study. There is an information packet to complete, a request to release medical information, and a request for biopsy samples if available.
Or go to the Foundation Home page and click on “Patients and Caregivers”, then “Action Alert” under – “Research” then “Please fill out this form.” at the bottom.
Complete the form. You will be contacted by the Mayo Clinic to fill out a package they will send you.
From a post by Jason Scott:
“There is no denying that cholangiocarcinoma is a very bad cancer to have. Even so, there are reasons to be hopeful. The variety of treatment options available today provides new hope for extended survival. Moreover, the evolution of the clinical trial process gives real hope that new treatments will be far more likely to benefit rare cancers compared historical experience.”
Other internal links to detailed posts from Percy. A wealth of information, slow reading, but definitely worth your time. Percy passed in 2014 but these (and many other) posts carry on his legacy. Use the “User list” in the green bar near the top and enter “PCL1029” for the “Username” then “Search” button. Click “PCL1029” then “View all PCL1029’s posts”
More good stuff on various treatments and studies from Porter:
Even more links from MarionS.
It will take you hours to go through these, so don’t attempt too much too fast. But there is a wealth of info here.
In order to better serve our global patient/caregiver community we continuously update the information on our website.
Please take a moment (or more) and familiarize yourself with the numerous resources available to you:
Board of Directors:
http://cholangiocarcinoma.org/the-chola … directors/
Medical Advisory Board: http://cholangiocarcinoma.org/the-chola … ry-boards/
Nursing Advisory Board:
http://cholangiocarcinoma.org/the-chola … ory-board/
The disease of Cholangiocarcinoma
Treatment Options: http://cholangiocarcinoma.org/the-disea … t-options/
Risk Factors: http://cholangiocarcinoma.org/risk-factors/
Key Statistics: http://cholangiocarcinoma.org/key-statistics/
Newly Diagnosed: http://cholangiocarcinoma.org/newly-dx/
Biliary Information Emergency Card: http://cholangiocarcinoma.org/biliary-e … tion-card/
Patient Registry: http://cholangiocarcinoma.org/professio … -registry/
Further Medical Research: http://cholangiocarcinoma.org/professio … nic-study/
Clinical Trials Now Enrolling: http://cholangiocarcinoma.org/professio … al-trials/
Major Cancer Centers: http://cholangiocarcinoma.org/for-patie … r-centers/
Educational Material: http://cholangiocarcinoma.org/professio … materials/
Final notes: First, congratulations on getting to the end. Second, there are true heroes and saints on this site. All have gotten hit, some more than once. But we hang tough. As Tug McGraw said: “Ya Gotta Believe.”
You and your medical team have to have the same philosophy. If you are aggressive and keep asking “What else can we be doing to fight this?” make sure your team is open to this and supports it. Otherwise, you will be frustrated and they may be offended that you don’t have complete confidence in their ability. It has to be a good fit, both ways, to get the best results.
Any comments to improve this are appreciated. Let me know if I repeat things or if any links are broken.
Final thought from JulieT:
“Hang on my coat tails…it could be a wild ride, but if we spread our wings we can soar!!!”
Who can doubt that sort of optimism will carry you passed the valleys ahead?
The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers.
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