Good info at the parent site:

http://cancergenome.nih.gov

with lots more references. 

CCA is under Gastrointestinal as a disease under study.  It appears that all data has been collected but the data is not publicly available.

Does anyone know if this is complementary to private sampling like FoundationOne or there is absolutely no connection and probably never will be?

Duke

Many of the latest information seems to be coming from China.  Is that because of the liver fluke influence?

3

(8 replies, posted in Introductions!)

OK - how about aggressive?

Tabytha - you've got to fight this.  Reading your post tells me you are a fighter.  That multiplies the effectiveness of any treatment.  I don't know anything about your WoW character Cillie but I'm sure she fights with every talent, spell, and weapon at her disposal.  Follow her lead.

Duke

4

(8 replies, posted in Introductions!)

First thing:  Check the heel of your right foot.  Is there an expiration date stamped there?  If not, wrap that "12 month" stuff in a pretty box and return to sender.

I was diagnosed about a year before you.  My onc told me if I didn't have chemo I had six months.  I've been on chemo since and my main tumor in the liver dropped from 19 cm to 10 cm.  Mets to lungs and lymph nodes are pretty much unchanged.  I feel it's time to go on the offensive and am getting a second opinion on treatments from Dr. Steven Alberts at the Mayo Clinic.  Cis/carbo seems to be a first choice for initial treatment for 8-12 rounds.  Ask what your onc thinks about getting genome testing from someplace like FoundationOne (not an advertisement or endorsement - sample has not yet been sent).  My onc brought that up last week, after 14 months of treatment.  Push your onc on how many CCA patients they are treating and who they are using for peer reviewers.  It is your right to get the best treatment you can.

Everybody IS different.  But, as Lainy said, Attitude is everything.  That will get you through the fears in the middle of the night.  Get yourself a strong support group.  Surround yourself with positive people.  (You can't go wrong starting with this site.)  Realize that there will be clueless people who don't know what to say, and will generally say the wrong thing.  Forgive them and forget them.  Avoid them if possible.

When talking with your doctors, make sure you fully understand what they are saying.  It's your life.  You can't drive the train but you sure as hell can ring the bell.  Be a participant, not a passenger.

I'm outspoken and a bit of a militant, so take what I say with a grain of salt.  I've got "Palliative Care stamped on my folder, too.  I feel like going there one day with a magic marker, crossing that out and writing "Imaginative Care".

Wishing we share many future July anniversaries,
Duke

I hope they spend as much time developing the software/database.  Good software makes good hardware look great.

Duke

6

(5 replies, posted in General Discussion)

Nancy -

I left in 1973.  Been back a few times.  Lived about a mile north of 22.  The area is a bedroom community for the business-heavy east.  Housing is out of sight.  Definitely yuppieville.

Duke

I've read frequent responses from some of the above individuals about doing their "yippee dance".  Well, that is one visual of me you don't need - trust me on this.  However, you do get a solid two thumbs-up and a bodacious smile!

Three year olds are a joy (remembering mine - no grand kids in sight).  In things like this they are perfectly honest (just don't ask who took the last cookie).  I think he may understand at a very deep level what is happening and this is way of expressing his love and need for you.

Wishing you many moments of joy with your family!  Treasure them.

Duke

8

(5 replies, posted in General Discussion)

Thanks for the info.  Just what I was hoping to find out.  Never thought about the cat, though, it is obvious.  She is de-clawed in the front so that might help.  But she does love to nibble and tug on things.  And loves to sit on my lap while I am on the computer.

What do you do with the "leftovers" after you disconnect yourself from the pump?

BTW - I lived just down the road from you in Lebanon just off Rte. 22.  Long time ago - 1960's.

Duke

9

(1 replies, posted in Members' Cafe)

I found this  on Amazon by accident (Aimee says there are no such things as accidents; everything happens for a reason - maybe this is it).  Anyway, it struck me as being useful in some situations.  Note that I don't have one.  Included all reviews.

Sharper Image Talking Pictures 24: Album for 24 Photos & 24 Messages - $35.00 includes shipping and handling - a little pricey.  You might find it for less on e-Bay.  10 second message for each photo

Comment 1:
I used this album for my husband who had a stroke. He has no speech as a result of the stroke but completely understands everything. I took pictures of all of his necessities, ie..bed, bathroom, food, medicine, food, drinks, blanket, and anything personal to him. I inserted them into the folders and recorded each item. He now is able to find the picture in the album and a simple press of the button tells me what he wants. It has been a godsend. I'm sure this is not what it was meant to be used for but it certainly has worked for us.

Comment 2:
I bought one of these for my grandmother who is in her 90s and lives in an assisted living home. I put photos of my two daughters, then 3 and 5 and they recorded a little message with their own photos. My grandmother loved it, and showed it to EVERYONE. She loves being able to go through it when she is lonely or wants to see those little grandchildren...we live in Seattle and she lives in Buffalo so we don't see each other often. My original plan was to update the photos and messages, but she doesn't want to delete their little voices...they are now 6 and 9...so I wanted to get her another one for Christmas this year, but can't find any! I wish they still made these things! Even though the recordings are a little fuzzy in quality, you can still hear them even after 3 years. The size is great to carry along with you and there is room for 24 pics which is just enough to show off to someone, but not too much to bore them. Please make this product available again!

Comment 3:
The sound was bad, Garbled, sending it back. Didn't work for what I bought it for. Lessons school work for learning texts.

Duke

As a Stage IV patient, I know this is in my future.  I can think of no finer way to pass on than you have described.  My prayers for you and your family, especially your mother.

Duke

Cut and paste from the Abstract:

Abstract and Aims
It has been reported that the incidence of intrahepatic cholangiocarcinoma (ICC) has increased in the USA, while extrahepatic cholangiocarcinoma (ECC) has decreased or remained stable. However, neither the recent trends nor the effects of the misclassification of Klatskin tumors are known.

Conclusions
The incidence of ICC has remained stable between 1992 and 2007 with only slight fluctuations, while the incidence of ECC has been increasing. Misclassification of Klatskin tumors does not appear to play a significant role in the trends of CCs.

Question from me:
What is being done to determine why ECC is increasing?

Duke

12

(5 replies, posted in General Discussion)

For those of you with pumps:

How did it affect your sleep?  I am primarily a side-sleeper and I can see a pump forcing me onto my back, probably in a recliner.  What are your experiences?

Did you have any problems with your port?

Duke

13

(0 replies, posted in Chemotherapy)

Is FOLFOX6 the current version in use or are there others?

Is it administered as an outpatient IV like gemzar?  Or does it require a port because some administration is done at home?

Any other info of importance?

Thanks

Duke

14

(3 replies, posted in Suggestions)

Maybe.  But it seems to convert everything to Eastern Standard Time so it should be able to figure out Today and Yesterday.  Just keep an eye out for curiosity.  Nothing that really requires fixing.  It gets straightened out eventually.  More important that the "Updated" tag gets applied correctly.

Duke

Is DNA image cytometry a test done normally?  Or is it a $pecial test?

Duke

The greatest news from you and Randi.  For you this must be like birthday, anniversary, and Christmas rolled into one!  Many happy returns.

Duke

17

(3 replies, posted in Suggestions)

I just noticed that the Summary of all the Boards sometimes gets confused between Yesterday and Today - it says Today when it was really Yesterday.   Example is "Introductions".  But when you go to the actual Board it's correct.  That one was obvious since it showed as a future time.

18

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

We rejoice in your good news and appreciate your sharing it.  You have our prayers for continuing health.

The Board has a little trouble with the following, but it's supposed to be mazel tov.  (Lainy - turn a (goy) guy loose with Google and the sky is the limit.)

מזל טוב

19

(11 replies, posted in Members' Cafe)

Looking over my posts I realized I have not acknowledged the single most important person in my hope for the future - my wife Aimee.  She never gives up, never gives in.  And won't let me.  We have discussions but there is no way I could do this without her.  Not to belittle the help of others, but it would be like a tripod with only two legs.

Caregivers - Realize that those you are caring for may assume you know how much they love you or may have trouble expressing their feelings.  That does not take away from what they feel.  Take a deep breath and keep on keeping on.

Patients - Know that your caregiver is giving their all for you, in ways you may not even know.  It's easy to love a happy person when things are going well, but chances are you are not happy at times.  When you need it most, it's the hardest to give to you.  Take time to express your feelings - don't assume they know it.

I love Aimee so much that I will NOT tell the story of being with her buying a bathing suit when she was seven months pregnant.  Trust me, it's really a hoot!  smile   To this day, when we walk past a bathing suit display, I snicker and she smacks me on the arm.  And smiles.

Peace
Duke

20

(18 replies, posted in General Discussion)

I believe lisacraine has had more than one resection.  There may be others.

What a bizarre disease this is when we hope for it to "only" an infection.

Pat -

There's a Sticky under "Good News" that collects milestones.  Some have reported even longer survivals than yours.  They may be able to provide their plans.

Duke

I like Kellogg ToGo as well as Carnation IB.  Whatever tastes best to you.

Make it a goal - don't go past a faucet without taking a drink.

Whenever I initially went for chemo, my nurse always asked about my bowel movements; quantity, consistency, and color.  The last time I had such detailed talks about that was when I was in second grade on the school bus.  It's a guy thing.  Sheesh!  I didn't realize there were going to be quizzes.

Are you able to keep your weight up?  I'm a minority - I believe if you need to gain weight, if it tastes good, eat it.  Lots of protein and calories.  Most recommend a more balanced diet.  I figured there was time for that after I recovered from the 30+ lost pounds.  I'm there now.

CA 19-9 and alkaline phosphatase are not definite for diagnosing CCA.  I use them as trends between CT scans.

Duke

Will this be your first CT scan after starting chemo?

There are other platins out there besides cisplatin.  I did not take well to cisplatin so my onc changed to carboplatin.  I hope your onc is open-minded and understanding.

Was there something that caused your surgeon to jump right in with a port?

Just remember that you can't change the past, only learn from it.  Your attitude and that of those walking this path with you are of utmost importance.  You have to have faith that God will provide you the grace to sustain you.  There are numerous examples of that posted on these Boards.

Duke

23

(75 replies, posted in Introductions!)

Olga
I'm glad that what was in my mind made it to the paper.  Sometimes it takes a wrong turn.

Here is a link (copy and paste into your browser) to something (Questions to Ask your Doctor) from the American Cancer Society that might help your brother and Angeles.  You've been down this road but it might help them focus a little and give the meeting some structure.

http://www.cancer.org/acs/groups/cid/do … 85-pdf.pdf

I'd also have them ask what the onc's experience (and that of the entire staff) is with treating cholangiocarcinoma.  And as you've read over and over, have them get a second opinion, especially if the onc's answers seem a little light.

They may hear "everyone is different"  "won't know for sure until we do more tests".  Make sure they keep after the onc to get better answers as treatment progresses.

Try to persuade them to actively participate in these Boards.  Use the Search function.  Get familiar with all the different Boards.  There's a wealth of information here waiting to be used.

Duke

24

(75 replies, posted in Introductions!)

Remember, there are two studies looking for info, both supported by the CCA Foundation.

1.  International Hepatobiliary Neoplasia Biorepository is the one collecting samples and cannot be viewed by participants.  The Mayo Clinic sends out a paper form to complete and requests blood and tissue samples.  (Chances are that if you had tissue samples taken, there may be additional material stored at the hospital.  This was true in my case.  I sent a consent form for them to send material to Mayo.)  This is the one that that has had one webinar (accessible from the link).  To access the forms and webinar go the the Home page and click on the light bulb on the bottom.

2.  International Cholangiocarcinoma Patient Registry forms are accessed from the Home page by clicking on the branch with leaves.  The forms are completed online.  Information can only be viewed by participants.  No analyses or summary reports have been issued as yet, only the raw information.

Much of the requested information is the same so it is confusing which one is being referred to.  In my mind I separate them as the Mayo Clinic study and the Patient Registry.

Marion - there is no hereditary factor here.  Patients are unrelated.

Cazgirl - I lived in Oswego six winters and remember Heid's in Liverpool.  Go there any time we get back  Coney's are great but not enough to offset the winters and stay.

So much for the prelude.

Olga -
We won't know the answers to your questions in this life.  We have to have faith that there are answers  There's a million cliches I could write, but it all comes down to faith.  Norbert's, yours, your brother's, his wife, family members, and friends.  Mine wavers from time to time.  I think, I'm not ready yet.  There's too much here to do and too much fun to have.  Then I re-center and and focus on making whatever time I have left the best I can.  It's almost easier for patients than care-givers.

Peace
Duke

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