(2 replies, posted in Members' Cafe)

Aimee has always wanted to go the Great Britain, and it looks like we will make that happen this Spring.  So, I am looking for recommendations, mainly when and what to see.  We like water, caves, museums, and scenery.  All we know is what we have seen on BritComs and murder mysteries and Dr. Who.  Any and all thoughts are welcome.



(7 replies, posted in In Remembrance)

I was looking for something else and I came across this.   Jason, if you read this post, thank you for your message.  It should be required reading for all those on this site.  Everything Jason said in this post is still valid, especially his closing statements:

"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."

http://www.cholangiocarcinoma.org/punbb … p?id=11791


There is a full text version available of Reference 2.

http://gut.bmj.com/content/61/12/1657.a … f_ipsecsha

"Guidelines for the diagnosis and treatment of cholangiocarcinoma: an update"

The British Society of Gastroenterology guidelines on the management of cholangiocarcinoma were originally published in 2002. This is the first update since then and is based on a comprehensive review of the recent literature, including data from randomised controlled trials, systematic reviews, meta-analyses, cohort, prospective and retrospective studies. "

It discusses some studies frequently referenced in these Boards:  BILCAP, ABC-01 and ABC-02.

It also shows how much things have changed in the last few years; some of the material is now out-dated so take it with some caution.



(2 replies, posted in Members' Cafe)

Happy Dance Gavin?



(20 replies, posted in Members' Cafe)

She could have asked for 36-26-36.

Besides, #2 was a good investment considering #3.



(20 replies, posted in Members' Cafe)

What is it with Princesses and frogs?

Live and learn and grow.

Cliches?  Got 98 more.  But, this is a big step.  So, saddle up and move on.  You are doing just fine.



(10 replies, posted in General Discussion)

Hercules -

Thanks for the visual of the waterfall.  Some of know we won't get to the harbor at the end of the river but that is no reason not to make it the ride of a lifetime. 

Look at the faith of Reepicheep at the end of the Voyage of the Dawn Treader:

"Where the sky and water meet, Where the waves grow sweet, Doubt not, Reepicheep, To find all you seek, There is the utter East."


How much help have you gotten from your oncologist in getting admitted to a clinical trial?  Or have you had to do it all yourself?

Any experiences with the Ohio State University James Center?



(4 replies, posted in General Discussion)

I haven't had a complete round of chemo since mid-September.  The Day 1 combo of carbo/gem clobbers my platelets (<60) for two weeks so I don't get to the gem only.  And the tumors were increasing in size and number and had met to my spine, so gem only is not the answer.  Looks like I either find something completely new or maybe just do carbo/gem and wait for a few weeks then repeat.  Has anyone done that?

There is a trametinib (NCT02042443) trial going on that might help.  Trying to get info on that but phone call not returned.  It was suggested in the FoundationOne report.  Cholangotango - your Dad is participating in this.  Can you give me details?  It says you take pills daily for 21 days then repeat.  Does this mean you don't get any time off?  Do you have to take the pills at the treatment center or will they let you self-administer?  Or let your local center administer?  What kinds of testing do they do during the treatment?  There are three Arms for this trial.  How do you get into the trametinib Arm?  Anything else would be appreciated.

Dr. Alberts from Mayo suggested nexavar (sorafenib) as a possible Plan B option.  This is the most hopeful link I found (thanks Gavin):  http://www.ncbi.nlm.nih.gov/pubmed/24294517

But it sounds like this is only a short term treatment - loses effectiveness quickly.

After all that the only thing I have to do is get my onc to go along with it.  Her "script" says FOLFOX is the next treatment.

CT scan next week.


I finally talked with someone at the James.  The trial has not yet been approved to run yet.  The good news is that I could self-administer the pills and would only have to go down there every two or three weeks for testing.  The bad news is that there are three Arms, randomly assigned, of which only one uses tramenitib.  The others use capecitabine (Xeloda) or 5-Flourouracil (IV), neither of which were flagged by FoundationOne.  Searches here suggest that Xeloda is more useful with extrahepatic CC than ICC.  I only found one mention of 5-Flourouracil and that was two years ago.

Why was I expecting this would be simple?



(0 replies, posted in Members' Cafe)

From the website:

"Lilly Oncology strives to build a connection to people with cancer, as well as those who care for them. That’s why we created Lilly Oncology On Canvas, a way for anyone affected by cancer to tell his or her story.

The 2014 Lilly Oncology On Canvas Art Competition marks the sixth competition and 10-year anniversary celebration. The competition presenters—Lilly Oncology and the National Coalition for Cancer Survivorship (NCCS)—invite all residents of the United States and Puerto Rico who have been touched by cancer, to express—through art and narrative—the life-affirming changes that give meaning to their cancer journeys. Those with cancer, as well as their family members, friends, caregivers, and healthcare professionals, are invited to participate."

There was a copy of the 2012 book in the center and I started browsing through it then started reading the stories.  If you get a chance to read it, I highly recommend it - and be prepared for emotions.  Lilly does not sell copies so I don't know how to get one, but I would if I could.  It's large - way too big physically - and emotionally - to read all at once. 

I found a copy of the 2006 version on Amazon, but nothing newer.

There's a site - www.LillyOncologyonCanvas.com that has info on current exhibitions and competition but nothing on how to get one.


Hadn't heard about the 20%, but was told that when I flew (or even rode in a car) I had to get up at least every two hours (or less) and walk around to lower risk of blood clot.



(10 replies, posted in General Discussion)

Must be something to do with the moon.  I'm feeling the same way.  I can see a big fork in the road coming and have no idea which way I'll go or even how I will decide.


Lainy -

A little yellow sticky that says - "Hey.  Trust me, got you covered.  There are people out there who are in much worse shape than you are, so be patient."  would be nice.  But Aaron had an answer for that.  Faith needs feedback once in a while.


Sorry about the meltdown folks,  Just had a major pity party last night.  Feeling better now.


One data point.  My first chemo was gem/cis.  Onc went to gem/carboplatin before the second when I said the ringing in my ears increased.  Ask about whether you should get a hearing test before starting - that way you would have something objective to compare against to see if there really is an impact on hearing.


Following up on Matt's post: getting a majority of doctors to agree on a standard set of guidelines borders on the improbable, especially from those without a great deal of experience with CCA.  You can't get in trouble if you stay in the middle of the pack.  I believe there are oncs out there who are making treatment decisions based on textbooks, not experience.  And some add their own spin/conservatism on it.  So, unless these new guidelines are carved in stone, they won't be universally accepted.

This is why I find palliative surgery so intriguing.  In my mind, if you can cut out some of the cancer, that has to be as effective as killing it with chemo or radiation, without the side effects.  And if you can reduce the tumor sites to just the lungs and lymph nodes, other treatments should be more effective than chemo.  I've been told that my chemo is going after tumors in the liver; anything else is bonus.   ==> palliative care.

There's a lot more I'd like to say but I'm afraid it would be too emotional.

I've climbed down from the soapbox and the whine and cheese is finished.



(9 replies, posted in Members' Cafe)

You have Aimee to thank for that one.  If she laughs unreservedly, that's my sign that it's a good joke.  Her filtering has never led me wrong.



(9 replies, posted in Members' Cafe)

I think husbands are going to laugh, but most, if they are smart, will not comment.


The FoundationOne report came back with possible several clinical trials.  Only one is convenient to me geographically.  That one (NCT02042443) has an arm that involves trametinib but has other arms that do not.  Obviously I am only interested in the one arm.

"Patients receive trametinib PO QD on days 1-21. Courses repeat every 21 days in the absence of disease progression or unacceptable toxicity."  Does this mean I get 21 days off between, or, the dosages vary and I take a pill a day every day until whenever?

Do I have to be administered the trametinib at the test clinic?  It is three hours away.  It would be much more convenient to have it administered locally.  Staying in a hotel for three weeks just to take one pill a day seems a bit ridiculous.  I could see visits on days 1, 7, 14, and 21, maybe.

Since only one of the arms would seem to work for me, could I have my onc prescribe trametinib under a "hardship exception"?


Angela -
I got the same story about "the right spot" and "starting something".  The "good" (?) news for me is that I had mets to lymph nodes in my neck and they were able to remove one with a minimum of fuss and bother.



(9 replies, posted in Members' Cafe)

I have not seen a post that contains only a joke, just for the sake of telling a joke.  (Maybe there is a reason for this, but ... .)  Here goes.  (If I don't get any positive replies, this will be the last one.)

A husband goes with his wife to her high school reunion.  After meeting several of her friends and former class mates, they are sitting at a table where he is yawning and extremely bored.

The band starts playing and people are beginning to dance.  There's a guy on the dance floor living large - break dancing, moon walking, turtling, back flips, the works.

The wife turns to her husband and says, "See that guy?  Fifty years ago he proposed to me and I turned him down."

The husband replies, "Looks like he's still celebrating."  roll


"Surgical palliation" is a term I never expected to hear.  Too often "palliation" seems to lose sight of the fact that people want to live and not be written off as terminal.  Once that determination is made it's hard to recover lost ground.



(6 replies, posted in Introductions!)

Kris -

I think Lainy speaks for all of us.  Know that you did everything you could to help your mother so have no regrets or or guilt or second guesses.  Make sure your Dad knows this too.  He will need extra TLC.


Is it any wonder that heart disease is so widespread among Hungarians?  Butter, butter, and more butter.  Replaced only by lard as required.

The problem I have with spaetzle is that they start out small but grow as i realize i still have so many to spoon out.  So much for "lightness".

Maybe we need a Board for recipes?  After all, weight loss is a problem for some of us (for a little while).


I posted this under General Discussion, but it may be appropriate for here, too.

This is an experiment of sorts.  I went there in early October - I wish I had some of this before I did.  If this works, I hope others will do something like this for clinics they've been to.

I put together a table of information with help from Julie T.  Unfortunately, it doesn't translate well into this forum's format.  Not sure if it is even possible.  It has addresses, contact names and phone numbers for the Clinic.  Plus a wealth of information on lodging options.  If anyone knows a way to capture this or to attach a Word file to a forum, please let me know.   I stayed at LaQuinta.  It has a free shuttle to the Clinic that runs once an hour.  Decent rooms and price.  Not sure how close it is to the Rochester airport since I flew into Minneapolis-St. Paul and rented a car.

If anyone has more info they want to share about the Mayo Clinic, feel free to add your own post.

Medical Facility: 
Mayo Clinic
200 First Street SW
Rochester, MN 55905

Contact Info:
Angella Young

Concierge Info:

Travel Service:

Many major chains.  Search the Internet.  Some offer discounts for Clinic patients.  Some offer free shuttle to/from Rochester Airport.  Some offer free shuttle to/from Mayo Clinic.
The American Cancer Society has partnered nationally with Extended Stay of America hotels. Through this partnership patients will have reduced lodging options. There are some restrictions/rules that you need to know about—you must call 1-888-227-6333 to have them book the room for you---you can’t call the hotel directly.
~The rooms are only available Sunday-Thursday.
~Room rates vary depending on patients income—either the room will be free or it will cost you ~$12. The representative will verify your income when you call to make check on room availability.
~You will also have to plan ahead for this program. They need at least two Fridays (not two weeks) advance lead time to process your request.

Maria’s Deluxe Apartments
1139 2nd Street SW
Rocheter, MN 55902
0.86 miles from Methodist; Furnished apartments with full size stove & Refrig. Rooms have microwave, sm refrig., no internet access. On city bus lines.

Mennonite Guest House
1407 First Street SW
Rochester, MN 55902
1.11 miles from Methodist; 4 bedrooms have own bathroom, 2 upstairs bedrooms  share a bathroom, 2 downstairs bedrooms share bathroom; no TV, radio, no smoking; children must be supervised. Kitchen privileges. One handicap accessible room. Volunteer Shuttle available

Nazarene Well House
47 13 ½ Street NW
Rochester, MN 55901
Or     nwh.roch@gmail.com
1.25 miles from Methodist;
12 bedrooms – queen size bed in each; laundry facilities; kitchen; high speed internet; cable in commons area; off street parking; free local and long distance calling; light continental breakfast;  ½ block from City Bus lines
on-site caretakers
14 blocks north of Mayo Clinic Campus

Viola Suites
2020 Viola Road NE
Rochester, MN 55906
(Dennis Loeser)
Or 1-888-289-2930
2.7 miles from Methodist; Apartment style, Stove, Refrigerator, Microwave, DW. Minimum 7 day stay. On city bus line

Serenity House Network
Homes/Apts.  in Rochester include: Serenity, Vix, Sunny Place Cottage, Baptist Hospitality House, Red River, Gauthier, Schuster
Check website for details on each site
Family style living, fully furnished sleeping rooms, homes & apartments. .Cable/satellite TV,  internet, linens, towels provided, free laundry, free parking, within 10 minutes of Mayo Clinic; near bus line. Transplant friendly.

Ironwood Springs Christian Ranch
7291 County Road 6 SW
Stewartville, MN 55976
16.15 miles from Methodist; Ranch style/resort facility. Microwave, refrigerator in each room. No TV. Internet available

Kahler Grand Hotel
2 2nd Ave SW
Rochester, MN  55902

Note:  The hotel has some rooms which are renovated and some are not.  I would ask before booking a room which type you are getting.

Note....Our favorite room to book is the Executive King because it is one of the newly renovated rooms.  There is a Mayo Clinic patient discount making the room $179 per night (note that parking with the Mayo patient rate is free).   But, when we were there in August, my appt was on Friday, so we stayed Thurs and Fri nights and got the room for the weekend rate of $119 (plus tax) per day.  Parking is an additional $16.00 but still much less than the patient rate with free parking during the week.  Apparently, when you book a Friday along with the Thursday, they consider the Thursday part of the weekend?

Neither the individuals who compiled this list nor the Cholangiocarcinoma Foundation have an interest in any of the medical facilities or the hotels/motels listed. 

Consider applying for financial assistance through Cancercare. They may help with transportation cost related to treatment.  http://www.cancercare.org/financial