1

(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

3

(26 replies, posted in Members' Cafe)

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

Duke

Yeah, but I bet you traded in some 40 year olds for a thirty year old.  I hope your insurance company sends you a thank you card for cutting expenses.

I love to sing, but have many stories why I only do it in the shower (and that even backfired on me once).

In eighth grade I was forced to try out for choir - and was rejected.

I sang to my kids almost every night to put them to sleep.  I can sing "We Three Kings" in one note - probably one that doesn't even show up in the score.  When they woke up in the middle of the night my wife sent me to sing them to sleep.  When I sing it at church, my wife starts to yawn.

The shower thing.  I was in a shower in college, singing away.  Someone snuck in and recorded me.  After I got back to my room, someone knocked on the door to invite me down to a bull session in the RA's room.  A few minutes into it they started the tape.  Most embarrassing thing was that I didn't recognize my voice at first.  What are friends for if not to humble you?

Duke

The longest journey begins with the first step.  My first step is one year.  With God's help, counting on many more.  It took a while but I've come to terms with my new life.

Tumors are stable.  Chemo is still easy.  Alk-phos is hanging around 130-140 since March and CA 19-9 is 60-70 since November.

Unrelated note:  My wife insists that I concentrate on doing things that are at least a 7 (0-10 scale).  Trouble is, planting flowers and bushes is a 9 but weeding is only a 1.

Duke

6

(15 replies, posted in General Discussion)

Coming up on my first anniversary of diagnosis so I looked back now that I have an idea what this is all about (as much as anyone).

What prompted my question was that in October 2012 my alk phos was 348 and increased to 449 a month later.  It was about 70 the year before.  It increased to 856 by the time I was diagnosed in July 2013.  I know it is not proof of cc, but it should have prompted my PCP to do something other than order two retests that confirmed it was high.  This is something that impacts both the Registry and the Mayo study since they want the diagnosis date.  Which begs the question about what my treatment options could have been.  But that train has left the station.  I've come to grips with that.

More importantly, it highlights the importance of following up when things don't look right rather than thinking "doctor knows best."  That's the message everyone who reads this post needs to take to their friends and family.  Doctors are human.  Second opinions and all that.  Plus numerous posts about clueless doctors.

This has been pretty much a downer, so to attempt to lighten this up:

If it doesn't look like a duck, walk like a duck, or quack like a duck, maybe you should buy your ducks somewhere else.

Duke

7

(15 replies, posted in General Discussion)

What do we know (or suspect) about the progression of cc?  Most of us are diagnosed in Stage IV because the symptoms are obscure.  But, how fast does it progress from I to II to III to IV?

Duke

Under Treatment History, can you specify repeat treatments?  I've read of patients who have had (for example) multiple resections.  Other treatments could have been repeated while interleaving with different treatments.

Duke

There is a potential wealth of info in the Registry, but analyzing it could use help.  But, since it is a database, that should not be insurmountable.  We need a way to put the data into subsets.

Example 1:
Cut the database into a subset which consists only of those people who have had resections or transplants.  Then it would be possible to get an idea of what factors into that option, e.g., age, stage, etc.

Example 2:
Develop a subset of only those who were diagnosed at Stage IV.  You could see which treatment options were most frequently used.

These are only two quick examples.  Once the process is developed, you could easily check for common factors.  Diabetics with Crohn's disease who had a near-relative with melanoma (just stringing things together but you get the idea).

Duke

10

(10 replies, posted in General Discussion)

I agree that registration is easy.

Plus, there are results already available.  Patience is required to wade through it.  No obvious "Ah Ha's" but did not expect any.  Only 89 responders so far.  It will take time.

What are they looking for in the way of lab reports?  If I can get my onc to put everything into a PDF file, can I just upload that?  Or is that something to be added later?

Duke

Marion -
Just be slow and steady on the new section, recognizing that it will be a work in progress for a while.

Maybe you could go back to say, the beginning of 2014, to Introductions to look for comments from new users to see if they had trouble finding something or had questions.  That should be your target audience for now.

One thing I have noticed is that some Boards seem to get comments from a somewhat limited population even though they are read by many others.

And as I've said before, Gavin's posts on new stuff are tremendous.  How do we "advertise" the Board more?  When you take time to read them, they provide a wealth of new ideas and options.  Do people get overwhelmed before they get that far down in the list of Boards?

If someone out there has experience with web site design, maybe they can chime in with the philosophies/psychology of site design and give Rick some ideas.  This is the only collection of Boards I participate in so I have no specifics in mind.

Duke

12

(15 replies, posted in General Discussion)

FedEx shipping is prepaid and labeled by Mayo.

I'm trying to get approval from the hospital to put out cards, but seem to have run into someone with a severe case of lack of interest.  Plus, I'll contact my PCP to see if he is interested.

Something to consider adding to the new section would be a more elaborate description of the other sections, plus the Search function.  This site can be overwhelming to someone wandering through it without a clear idea of what they might find and the best places to look.

Maybe add a description of the various designations, e.g., "moderator".

Add a small vocabulary section.  intrahepatic, extrahepatic, Klatskin's, cyber knife, resection,, metastasis, etc.

Duke

14

(15 replies, posted in General Discussion)

Those of you who are going to join the Mayo Research Study, here's a few things that are not written down.

First, you need to keep opening boxes, not stop when it says Do Not Open Until Ready to Obtain Samples.  There are directions inside.  Like, you have to freeze the ice block BEFORE you have the samples taken.  Obvious, once you think about it.  If you can do it in conjunction with chemo this gives the person taking the sample a week to plan what needs to be done.  Don't spring it on him/her without prior communication.

Second, Do NOT attempt to help by taking the samples to FedEx yourself.  They won't accept blood from you - it has to be a special pickup by FedEx from the collection site.  Work this out with FedEx before the day of the samples.  Follow the directions, don't try to out think them.  I spent 40 years trying to out think the system - sometimes verbatim compliance is the only way, not matter what common sense tells you.  I thought there would only be one tube - there were five.  When you put your labels on the tubes, cover the existing tubes so clotting can be observed in the four tubes.  You need to have shipping tape for the inside and outside boxes.  Bring your own in case the collection site doesn't have any handy.

Third, keep in email contact with Mayo.  I worked with Nasra Giama.  She's great.

All that said, this is very easy, once you read the instructions and follow them.  And it's for a great cause - putting an end to CC.  As Nike says, "Just do it."

BTW, I haven't read about anyone else having issues with this.  Am I the only one with chemo brain?

Duke

Liver transplantation for cholangiocarcinoma: current best practice.

http://www.ncbi.nlm.nih.gov/pubmed/24811436


Gavin's posts don't seem to get the traffic they deserve.  They are not the most optimistic or the easiest to decipher, but they present the cutting edge of research.

Duke

From Gavin:  (Who finds the greatest stuff.  Now I just need a medical degree to understand it.)  I will find the actual link and post it next.

Abstract
PURPOSE OF REVIEW:

Cholangiocarcinoma is a rare tumour with dismal prognosis. Only radical resection offers a chance for cure with reported survivals ranging from 25 to 45% at 5 years. Considering the low rate of resectability and lack of efficacy of other treatments, liver transplantation has emerged as a reasonable approach to cure selective patients with unresectable diseases. The use of liver transplantation, however, is associated with the inherent risk of early tumour recurrence due to the need for immunosuppression and the poor survival rate. This review will focus on the role of liver transplantation in treating patients with cholangiocellular cancer.

RECENT FINDINGS:

The indication of liver transplantation for cholangiocarcinoma has evolved over time moving from an absolute to a relative contraindication until eventually becoming the best indication for a small group of patients presenting with unresectable perihilar cholangiocarcinoma, when associated with a neoadjuvant chemoradiotherapy. In contrast, the indication of liver transplantation for intrahepatic cholangiocarcinoma is far from being established and should be offered only under protocol, mainly for small tumours in the setting of cirrhosis.

SUMMARY:

The poor outcome of cholangiocarcinoma, irrespective of the therapy, justifies the search for novel approaches. Only selective patients with perihilar cholangiocarcinoma subjected to a neoadjuvant protocol may qualify for liver transplantation.

PMID:
    24811436
    [PubMed - in process]

I think the "bar" Matt is referring to is no metastases.  Hopefully, this will be one of the factors presented in the Foundation Registry.

Whoever has a copy of the report, please post the list of the 12 centers referred to.

Duke

18

(5 replies, posted in General Discussion)

Not too much muffled.  Biggest problem seems to be that I have to listen carefully which takes some of the enjoyment out, espcially when listening to music.  I'm listening rather than experiencing.

Hearing did not seem to get any worse.  But, there could have been a slight gradual degradation so I won't say it didn't happen.  Some people are harder to understand and some situations are harder to hear in (background noise, etc.).  With the hearing aids, some sounds are just plain irritating, example, folding a map or scraping a plate.

Duke

MSK is supposed to be top shelf.  Unforgivable that they missed this.

Which gets back to the importance of early diagnosis and treatment.  And getting the word out to oncs who have little or no cc experience.  And second/third opinions.

I'm fortunate to not need a port.  There were times that I thought a port would be a wonderful device, but, reading your posts (and others), I'm not so sure now.  There is a lot more to it than I ever thought.

As everyone else has said, you are strong and will get through this.  You have to.  There is no "what's behind Door #2" option.  Therefore you will.  QED.

Would it help to imagine us with you, sharing the anxiety and pain?  It wouldn't take more than three or four of us to dilute it to a manageable level.  We'll be there for you.

Duke

Don't take this personally Wayne, but I have issues with some of your statements.

From what I've read on this site, the majority of patients have metasteses which rules them out out at step one.  Therefore, I don't think oncs are hiding anything from patients.

When you read the stories on this site of long-term survivors, they seem to  be primarily those who were detected before mets and were able to have resection(s).  Even some of those were only temporarily successful.  Clearly, a new liver into a body without mets provides the best chance for long term survival.  But there just aren't that many of those.  Us "old people over 60" who were not discovered until Stage IV are just SOL.  This is one thing I am hoping the Registry will shed light on:  just who are the long term survivors and what do they have in common.

I found a summary of the article but it looks like you need to spend $35 to get the full article.  Maybe Gavin can find it for free somewhere.  Here is the Reader's Digest version:

"We collected and analyzed data from 12 large-volume transplant centers in the United States. These centers met the inclusion criteria of treating 3 or more patients with perihilar cholangiocarcinoma using neoadjuvant therapy, followed by liver transplantation, from 1993 to 2010 (n = 287 total patients). Center-specific protocols and medical charts were reviewed on-site."

"The patients completed external radiation (99%), brachytherapy (75%), radiosensitizing therapy (98%), and/or maintenance chemotherapy (65%). Seventy-one patients dropped out before liver transplantation (rate, 11.5% in 3 months). Intent-to-treat survival rates were 68% and 53%, 2 and 5 years after therapy, respectively; post-transplant, recurrence-free survival rates were 78% and 65%, respectively. Patients outside the United Network of Organ Sharing criteria (those with tumor mass >3 cm, transperitoneal tumor biopsy, or metastatic disease) or with a prior malignancy had significantly shorter survival times (P < .001). There were no differences in outcomes among patients based on differences in surgical staging or brachytherapy. Although most patients came from 1 center (n = 193), the other 11 centers had similar survival times after therapy."

"Patients with perihilar cholangiocarcinoma who were treated with neoadjuvant therapy followed up by liver transplantation at 12 US centers had a 65% rate of recurrence-free survival after 5 years, showing this therapy to be highly effective. An 11.5% drop-out rate after 3.5 months of therapy indicates the appropriateness of the MELD exception. Rigorous selection is important for the continued success of this treatment."

Carefully read the last sentence.  This is also referred to as "cherry picking" or "picking the low hanging fruit".

I could not find a reference to the 12 centers.

For those fortunate to have discovered cc while it was still small and had not metastasized, count your blessings.  We are happy for you.

Duke

22

(14 replies, posted in Suggestions)

But don't lose track of the compassionate side of this site.  Patients and caregivers, especially their first few posts, are frequently made during times of stress and anxiety.  They may not post in the Board that would best fit (in retrospect).  Sometimes threads (could/should) spin off into multiple Boards which makes it difficult to see the big picture.  And, don't forget that these Boards are getting huge which makes it difficult to see everything that's going on.  Even tracking the references that Gavin (bless his patience and thoroughness) posts is daunting.  This is where "Search" is invaluable.  And there are nuggets from several years ago that are equally important today.

It would be nice if there were a quicker way to show "My Posts".  The current method is workable but a little cumbersome.

While we are sending letters to Santa, is there a way to for each of us to add a specific personal (user-defined) tag to individual posts?  I come across gems by accident that I want to be able to find again but don't know how to use the computer to track them.

There is now a cat on my lap who is saying I've spent too much time on the computer and it's her turn now.  Since that is likely to help more with combatting CC than most things I can think of, she wins.

Duke

So, the CCF Registry is for patients and the Mayo Research Study is for researchers?  When will the Registry be available for input?

BTW, I just filled out the Mayo forms.  Long winded and very general.  Written by a researcher and not by a patient.  EX:  The section on drinking tea was based on conventional tea without ackowledging herbal teas.  There was a question on weight change that seemed to assume you weight would either decrease or increase, not both, in six months.  No questions on alternative treatments such as chiropractic for back pains and acupuncture.  Maybe they will get info from the hospital treatments after the release is processed.

Will try Tuesday to get a blood ample to send to Mayo when I get my next chemo.  Have not had an overwhelming positive response of support from the hospital yet.

Duke

24

(25 replies, posted in General Discussion)

Is there any way to go through ASCO?  I see they just held an annual meeting.  I would think the Foundation would have enough horsepower to either get on the agenda or propose a topic - "Supporting/Educating the Patient" sounds about right.  Clearly, this would extend beyond CC, but at least it would give us additional exposure.

ASCO must have a newsletter.  They are always looking for short articles.

Or, we the patients and caregivers, should just take it on ourselves to make our onc's aware of this site and the value it provides.  Subtlety was never my strength.

Duke

I don't want to get into another discussion with the nutritionists, but, at this point, whatever you can get your husbanc to eat and drink is a good thing.  Carnation IB is good.  Kellogs To Go is good.  I like the high protein Fiber One bars;  the high fiber bars are also "useful" at times.  I grazed almost all day and even got up during the night.  I also tried (with some success) never to pass a faucet without drinking water.  Even a small glass helps.

Duke