1

(18 replies, posted in Suggestions)

It sounds like this never got wings.  Mechanics aside, how do you find out?  If the poster is the patient ... . Otherwise, if the poster is the caregiver, that person may not choose to update, other than the section for "In Remembrance" or elsewhere.  Or may simply stop posting because it is too painful.

Duke

I was more interested in further results from the Mayo Clinic data study.  The first was a good start but there is so much more to be reported.

Duke

What a tease!  They give you a little info but then you need to pay $45 to get the whole study.  This seems fairly common.  Is there another way to get the full study for this (and other) abstracts?

4

(4 replies, posted in Members' Cafe)

Are those sheep or furry gazelles?  Never knew they could leap.

What provided the incentive for them to run?

5

(4 replies, posted in Members' Cafe)

You wouldn't see anything strange about my post since you've known me for quite a while.

The only storks we want to see in the future will be those following marriages of my kids.

Somehow, I knew you would be the first to reply.

Know anyone who has taken the mule ride to the bottom of the Grand Canyon?  We are looking into that over the winter - lot's warmer at the bottom - Phantom Ranch.  Web site said that it was not for people with fear of heights.  I figure I could always close my eyes.  And hope that the mule did not have a fear of heights and closed his eyes, too.

Duke

6

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

Wow!  I went back and searched all your topics.  What a journey in such a short time.

One question:  were your tumors restricted to the liver or had they metastasized?

Duke

The word "future" is my current favorite.  Just before I read this I posted something on that in "Member's Cafe".

Bottom line - it's time to live!

Duke

8

(4 replies, posted in Members' Cafe)

To those of you who have been following my journey, this will make sense.  Others may find this somewhere between mystic and creepy.  Now might be a good time to exit.

My outlook has been a mixture of humor, analytical, dark, spiritual, and a suspected fifth part that I can't explain - it is obscurred, rarely seen, but there.

I wrote this using pen and paper at a campground in the Adirondacks.  Tenting, cooking over a fire, and the finest outhouse in miles.  Water but no electricity.  That is part of the healing.  Poplar Point is on Piseco Lake.  Aimee and I started camping here in 1982.  Her family brought her as an infant in the late 1950's.  We have a history.  Last time we were here was a year before CCA.  Aimee brought up coming here this year.  I had chosen not be bring it up.  Not sure if this would be tainted by "what could have been".  Thank goodness I listened to her.  She refuses to see anything but the best outcome in anything.  Talk about an optimist!  So I came to grips with memories, past and future.  But we know we can't change the past so let it go.  And the future is what we make it.  We have to find ways to make it the best we can.  And that is the big lightbulb that finally lit for me (and the purpose of this post).  I have a future!  It's not the same one I had in mind 14 months ago.  But, I HAVE A FUTURE!  I know, capitalizing words in a email is like shouting.  But that's how I feel about this - shouting it out loud.

My son Chris went to Space Camp in Alabama when he was in fourth grade.  One of their mantras was:  "If it is to be, it is up to me."  "With a little help from my friends" and my medical team I will make it so.  God is going to let me live as long as I need to, same as everyone else.  Maybe even as long as I want to.  No pre-stamped expiration date - still marked "TBD".

None of this is earth shattering.  But it is a major break through for me and I wanted to share it with you.  Those of you who already know this are thinking (I hope) "Well done Little Grasshopper."  (Kung Fu - David Carridine)  Others I hope will find this moment yourselves in your own time.

Duke

Any word when the next webinar is scheduled?

Duke

Any ideas on the following?

I am taking gemzar on days 1 and 8, skipping day 15, then resuming a new round at day 22 which is a new day 1.

If you have to miss a chemo treatment due to another commitment, is it better to  put an extra week between rounds (equivalent to skipping day 22 and resuming on day 29) or better to miss a treatment between treatments on day 1 and day 8?

Duke

11

(5 replies, posted in Insurance)

After some initial bumps in the road with SS, I did a phone interview and flooded the person with info.  I didn't hear anything for a month and called back to find out that I had been fast-tracked and approved for disability in two weeks.  The best part of the phone interview was that I was put into a call back queue and did not have to wait, listening to messages and music for over an hour.

After all the horror stories I had heard about SS I was blown away by the cooperation I got.  Of course, they were supposed to convert me from retirement to disability July 1 but that did not happen.  Time for another call.

Duke

I've had a little of all of the above.  I have a tumor in my liver and several in both lungs and some in lymph nodes.  Before I was diagnosed, I had pain on my right side at the bottom edge of my rib cage.  At the worst it kept me from sleeping.  The only tolerable position was sitting up.  After chemo began and the liver tumor shrunk from 18 cm to 10 cm, the pain went away.  If I remember I also had some pain in my right shoulder but dismissed that as "sleeping wrong."

Duke

13

(9 replies, posted in Introductions!)

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.

Duke

14

(68 replies, posted in Suggestions)

I didn't have an issue with loading speed until the last week or so.  Now it is very slow, even at 4:00 am.

15

(4 replies, posted in Members' Cafe)

I've been in a heavy mood lately, but I guarantee you will find this cool!  If not, double your money back.  But only if you are over age 60 or a history major.  And Gavin, there's stuff here from the other side of the pond.  But you will have to open a history book for most of it.  Or Wikipedia.

From the original post:
Never could understand all the references on Billy Joel's song -- fortunately, with this video, given the picture(s), now you can "see" what your "ears" couldn't make out.

It's amazing what Joel was able to put into music and lyrics lasting only a few minutes.

Whether you are a Billy Joel fan or not, you probably remember his great song, 'We Didn't Start the Fire..'

Here it is, set to pictures... . It's a neat flashback through the past half century. Turn up volume, sit back and enjoy a review of 50 years of history in  less than 3 minutes!

Thanks to some guy from the  University of  Chicago  with a lot of spare time and Google. Top right gives you full screen....top left lets you pause, etc.  Bottom left shows the year.  The  older you are, the more pictures you will recognize.  Anyone over age 65 should remember over 90% of what they see. But it's great at any age.


We Didn't Start The Fire

http://yeli.us/Flash/Fire.html

Duke

16

(9 replies, posted in Introductions!)

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.

This started out as a general summary of what I know about CCA, pulling together thoughts from others.  But there must have been a lightning strike, and like Frankenstein's monster, it lives!  But I don't know what to cut.  Please comment on how I can improve this.

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 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. 
http://cholangiocarcinoma.org/webinar-u … epository/
Or go to the Foundation Home page and click on the light bulb on the bottom of the page - “There is an URGENT need for Research Participants”.  The links are there also.  (More below.)

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.

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.  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.

Use the Search feature listed at the top.  You can look for specific medical centers, doctors, symptoms, treatments, and a whole host of other items.

Find out all you can about the disease and treatments.  There are Discussion Boards called New Developments, Clinical Trials, and Websites which provide lots of info.

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 and loved ones.

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.

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.

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.  Link:   
http://cholangiocarcinoma.org/professio … -registry/

Or go to the Foundation website Home and click on the link with a branch with leaves “Learn more about the International Cholangiocarcinoma Patient Registry”.

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.
For more information please email: coordinator@cholangiocarcinoma.org or Donna Mayer, Executive Director, at donna.mayer@cholangiocarcinoma.org”
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 the light bulb on the bottom of the page - “There is an URGENT need for Research Participants”.  The link is there also.

http://cholangiocarcinoma.org/professio … nic-study/
Complete form at the bottom of the page.  You will be contacted by the Mayo Clinic.

Not all doctors are knowledgeable about recognizing the symptoms of and treating cholangiocarcinoma.  There are tacky/bad/inexperienced doctors.  Members have shared their bad experiences (and also praised the best).  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 online most of the time.

Final notes:  First, congratulations on getting to the end.  Second, there are true heroes and saints on this site.  Life has thrown them a high and inside screwball and they don't know if it's going to break, but they hang in there.  Some have gotten hit, some more than once.  But they hang tough.  As Tug McGraw said: “Ya Gotta Believe.”

Peace.

Duke

Disclaimer:
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.

17

(28 replies, posted in Introductions!)

Follow up to my December 5, 2013 post, first paragraph.

Pebble Beach, CA – Judy Nemes made her peaceful transition on May 30, 2014. Judy's passion for photography and writing was a gift as she wrote and shared her life story starting in Hungary, through her travels and 17 years of cancer. She loved theatre, and continually educated herself with research and reading. Her friends were all of the many books she had on her shelves and then e-books. She will be remembered for her strength, courage and her inspiration to others.
Throughout her ordeal with this disease, Judy had always stayed extremely positive through her last days. She understood that her body was the carrier of the disease – not her mind and spirit. It was this drive that kept her alive and optimistic all of these years.
Judy is survived by her loving husband of 50 years, Tomi; her sons, Brian and Kenny; Kenny's wife, Michelle; grandchildren, Briana, Justin, Olivia and Emma; brothers, Peter Szabadi and Tommy Szabadi; and best friend, Sheri Parelskin.
We give gratitude for her many friends, Dr. Hausdorff, Pacific Cancer Care – Vivian, Mary and the rest of the nursing staff, and Hospice of the Central Coast for their loving support. - See more at: http://www.legacy.com/obituaries/monter … Rufvb.dpuf


Living with Colon Cancer

by Judy Nemes

Inspiration image

Sigmoidoscopy, the detector,
I, the observer
And protector
Of this body
We live in.

With a positive attitude,
Always planning ahead,
Cancer will not run my life!

Fifteen years of
Surgeries, treatments,
Removal of organs.
My armor intact,
I forge ahead.

Tumor takes sabbatical,
Goes into hibernation.
I travel the world …
London, Paris, Rome.
Cancer will not slow me down!

I am the observer,
Watching
This amazing story
Of a woman, me,
Never giving up.
Cancer will not run my life!

Who am I?
I am Judy,
Lover of life.
Cancer will not define me!

♦ ♦ ♦ ♦ ♦

Judy Nemes is a colon cancer survivor living in Pebble Beach, CA.

This article was published in Coping® with Cancer magazine, September/October 2013.

Lainy - Do I hear Judy and Teddy discussing the merits of spaetzle and gnocchi?

Duke

18

(53 replies, posted in Introductions!)

Make sure to take time to stop and smell the roses.

Duke

19

(6 replies, posted in Chemotherapy)

Maybe my expectations were unrealistic.  The main tumor had decreased from 19 to 10 cm in about 10 months and I naturally hoped for a continuation.  Onc will probably order another CT in 2-3 months.  Until then will monitor for changes in alk-phos and CA19-9.

When I read posts from others, I am continually reminded how good I have it.  I am tolerating chemo extremely well.  Which is maybe why I'm thinking I could go a little more aggressive if the results support it.  Before I retired I drew the generic survival curve (we've all come to know and hate) for one of my friends.  I told him that as long as the curve doesn't drop to zero, someone has to be out there and I intend to be one of them.  His reply is not suitable for a family site like this, but it was his way of being supportive (LOL).  Something along the lines that, if chutzpah is sufficient to accomplish that goal, I have enough to succeed and leftovers to share.

I feel better.  Thanks.

Duke

20

(6 replies, posted in Chemotherapy)

I had eight rounds of gem/carbo then my onc changed to gem only to take stress off my liver.  Liver tumor had been steadily decreasing while on gem/carbo.  After seven rounds of gem only, the tumor is now "stable" (no longer decreasing).

Have people gone back to gem/carbo (or gem/cis) after being on gem only?

Or,

Did you change again, maybe to Folfox, or something else?

If you stayed on gem only, did your tumor remain stable?

Duke

I'm sorry I missed the webinar.  There had to be so much more information presented - typical of PowerPoint presentations.

Did they give any time frames for when this information may get factored into treatment plans?

Any information about being able to detect at an earlier stage?

Slide 32 - "Survival of pCCA Patients ...".  When will they have a similar slide for iCCA patients?

Duke

22

(10 replies, posted in Introductions!)

I cannot stress how important attitude is, and it sounds like your wife has a great one.  I lost 34 pounds in six months and regained it in the next eight.  Small frequent "grazings" worked best for me in the beginning.  It was a long time before I slept through the night - I regularly got up at 0200 and 0600.  I am partial to Kellogs' ToGo but Carnation IB was good, too.  Lots of protein bars - I alternated between high protein and high fiber.  There are many of them so there are lots of opportunities.  Some people have problems with no longer enjoying foods they have loved over the years.  Keep looking until you find foods she likes.

Trials require a lot of research to determine eligibility.  Depending on her onc and the hospital system, your wife might have better luck if you did preliminary research and presented the onc with options.  That's my plan for when trials seem the best option.  IMHO this is my life so I can't expect the doctor to do something I am not willing to do myself.  I am part of my team so this is something I can do.  This may sound a little militant, but I don't want to look back and say, "I wish I had done something else.  I just didn't know."

Walks, fresh air, being with people, all help attitude.  You will frequently see the statement (or very like it), "This cancer sucks!"  It does.  Say it.  Shout it.  OK.  Now get on with doing everything you can to help your wife.  Put on your best face for her.  Reading posts, it sometimes seems that this is harder on the caregivers than the patients.

Wow.  This post took a strange path.  Not at all what I had in mind when I started.  Definitely not my normal light-hearted post.

Sam - all you can do is all you can do.  You can't do any more, and you owe it to your wife and yourself not to do one iota less.

Duke

23

(19 replies, posted in Members' Cafe)

One of the unexpected benefits I get from these Boards is watching how the train of a topic winds around the curves of people's minds.  This one started dark but has now developed an almost lighthearted banter.  So it has helped Emad in that way.  And I know Carl says he has "retired" but it's obvious that he still finds time to watch over us even as we keep him and Lynn in our thoughts and prayers.

It's been said over and over that this is a roller coaster ride.  I just realized that for the surviving care givers it probably never ends.   The ride may eventually more or less level out, but that is the transition to "normal" life.  You will never forget your loved one and your journey.  Take what you have learned and apply it to make not only your life but the lives of those around you better.

Peace
Duke

Going back to the original post, I think the new site or the new compilation of data, has corrected the issue as long as you don't include your last name when you register.

Can others check this out?

Duke

25

(35 replies, posted in Members' Cafe)

Carl and Percy -
Know that I will keep you in my prayers.  God grant you closure and peace.

Duke