1 (edited by DukeNukem Wed, 14 May 2014 20:47:23)

Topic: Data study

We have a large data base of cc patients.  Has anyone ever asked members (especially those who have survived more than five years) for specific information to see if there are common threads?  Obvious things that come to mind are were they diagnosed before mets occurred and had successful surgeries?  CA 19-9 and alk-phos numbers?  The ever-popular are some cancer centers actually better than others or is it simply that they have more patients so they have more successes?  Age at diagnosis?  Treatments.  There are more, but these come to mind quickly.

Marion - you might have a good insight as would the other Moderators.

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Data study

Duke....wow, you are making me work for this answer.
You are so right, we do have a large data base however; we have yet to compile and to disseminate the information. Any volunteers out there? 

The upcoming global patient registry though will provide some insight to the questions you have asked.  As the information will be de-identified, you or anyone else entering data has the opportunity to cross check all entries.

In regards to major centers: I believe that it is important to recognize that volumes of patients relate to experience gained as well. 
Please see below link:
http://www.cancer.net/navigating-cancer … nd-opinion

How did I do, Duke?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Data study

I've got a questions concerning the registry.  When I was up at Mayo last time, I was given a paper asking for my consent to use parts of my "stored" tumor, etc for research.  I doubt very much that they kept any blood samples from draws though.  I'm wondering if I am in the registry because of Mayo asking for permission...or if that was something different and separate altogether.  I absolutely want to participate if I'm not already.  How would I go about finding out?

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Julie....I don't have the answer to that question?  You might want to contact Mayo for an explanation.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Data study

Marion,  Okay....I intended to send my oncologist an email today anyway, so will include that.  Even though I've elected to stay here at a different oncology clinic for my chemo, I will still be going back to Mayo for CT scans (they are done better and with far greater clarity up there) and consultations on a regular basis.  So, when Mayo does a blood draw when I go up, we could have the extra drawn for the registry. 

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Julie.....let me get a bit more information re: the blood draw for registry.  I will get back to you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Data study

Marion -
Your answer was 4.0.  HIPAA has to be a concern to everyone.

I'd be willing to work with others on this.

The first, and posssibly most important aspect is coming up with the questionaire for data to be tracked.  If you don't ask the right questions, you won't get the right information.  And you don't want to pull a Columbo - "Just one more question."  After that, it's pretty much plug and chug.

I think it would make sense to analyze the datas in phases.  First those who are long term survivors.  Pick a number - five years?  Or maybe better would be to decide how many phases and then divide the data by that number so the data analyses would be about equal.  There are pluses and minuses to each, not all of which are analytical - some will be emotional.  Another hard part will be obtaining data for those who have passed on.  Their caregivers may not be willing to go back to those times.

I'm with Julie - any more info you can send out to everyone about the Registry will be appreciated.

Fighting with dignity, not desperation.

Live, Laugh, Love

8 (edited by marions Fri, 16 May 2014 00:22:57)

Re: Data study

Don't have the answer for Julie yet, but will stay on top of it.  In regards to the patient registry, have you used the link?
http://cholangiocarcinoma.org/actionalert.htm

We have been working on the Cholangiocarcinoma Global Patient Registry for more than one year - no kidding.  Questions had to be compiled, corrected, forwarded for review, questions revised, physicians revised some of the revisions, back to revisions of revisions, IRB requested more revisions and so on.  Yikes.  Finally it is in the "final" IRB stage and we are awaiting the launch of the global patient registry.  FINALLY.  This registry is de-identified and will allow for any one person entering information to also read up on the information entered by others.  This in turn will allow for a great overview of treatments as well as survival of each registrant. 

As of now, more than 500 people have pre-registered. Quite impressive.

Duke....I have been in the dog house many times over for exactly what you are referring to, the definition of "survivor" and definition of "long term" survivor.  The overall consensus is that the person diagnosed with this cancer is considered a survivor. 
Bruce (2000miler) had compiled a list and provided a graph addressing diagnoses and survival, but it is not current:
http://www.cholangiocarcinoma.org/punbb … er_id=9357

If someone would take on the task of compiling all information (similar to what Bruce had done) and then breaking it down into categories:  diagnoses, treatment, years of living with this cancer, etc. maybe then we could get a more accurate answer. 

Patty started a thread: Survival ....please tell us your latest milestone:
http://www.cholangiocarcinoma.org/punbb … hp?id=8883
Perhaps we can revise this thread and see who will respond?

Suggestions? 

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Data study

Marion,  I went ahead and followed the link you posted....filled out the info and sent it on.  I guess when they contact me, I will then discuss with them what I signed at Mayo and see what they say.  I just didn't want to have duplicate stuff going on and confusing the whole process.  We'll get it straightened out.  I "sort of" think that what I signed may have been for general research period...and not specifically this registry.  Thanks.

Julie t.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Just so I am clear and I am a little confused by all this. This registry is the same study through Mayo correct?  I did sign up for that and received a hefty packet in the mail and the next steps I am supposed to complete to be a participant. smile
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Data study

Porter,....I'm still confused too, but it seems that the registry is being overseen by Mayo, if I got that right.  After signing up on line for the registry this morning, I got an email back right away with what to do next. Since I'm getting blood draws here for Coumadin levels twice a week, I could just have them draw out the extra blood at the same time, ...or, I could probably wait until I go back to Mayo, when they want a new scan during or after the gem/cis chemo.  Don't see why either way won't work.  I think now that this is totally different than the release I signed up at Mayo in early April. 

I did sign some paper while I was at Mayo for my post surgical checkup....something about using tumor tissue for research.  I need to touch base with them about that though...to make sure that they leave some tissue for DNA sequencing if I choose to do that.

That brings up another question.  My oncologist suggested that once we do the Gem/cis....if the cancer comes back, it may change DNA from the original tumor and thus, a DNA sequencing done on the original tumor may be somewhat worthless.  If I understood him right, if another tumor showed up...then that one would be tested and sequenced (if I wanted to do that...heck yeah)....and it "might" give some guidance as to what to attack it with for treatments.  Does any of that make sense? 

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Julie….to answer your question re: previous blood and tissue samples at Mayo, here is some preliminary information.
Samples cannot be used unless a prior consent form has been filled out.   
In the meantime, for those wanting to participate in the study and have appointments set up or are ready to schedule an appointment with a Mayo physician please, follow these steps: 
http://cholangiocarcinoma.org/actionalert2.htm
Nasra will get in touch with you.
As soon as we receive IRP approval, the Cholangiocarcinoma Foundation will provide you with explicit instructions.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Data study

Marion,  Well, I had just replied to Nasra's email following my signup to the link you sent.  As usual, I replied with one of my very long messages (would you expect less from me?) to her, responding to each of her questions in detail....and yup...,.I pushed my H. Pylori theory in detail as to it being the cause of my ICC.  I'm having blood drawn twice a week for the Coumadin and will probably have it drawn again at Mayo when i go up for the next consult and followup CT scan, so it isn't that big a deal to me either way.  She's going to mail out a packet and I'll get that done and sent back to her so we're ready to go with it whenever they want things. 

Wish I had $25-50 million to fund my own study for H. Pylori as one of the risk factors for this cancer....and treatment based on that....but...not until I win the Lotto.  smile   Gotta buy a ticket first, I suppose. smile

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Oh my gosh...I am so excited.  I heard back from Nasra again, this time thanking me for all the medical background leading up to my diagnosis and following treatment.  But, even better, she has sent that information on to Dr. Roberts and to a Dr. Roon Chaiteerakij at Mayo.  The latter is a research fellow who is from Thailand who may be familiar with the study in Thailand about bile duct cancer and  H. Pylori.  Roon is specializing in liver, but esp bile duct cancer research.  At least someone took me theory seriously and passed the theory along to at least a couple people who might give it more than a nod and a shake of their heads ....and maybe even do something with it.  It's a long shot......but.........  Haven't felt this excited for quite a while.

Julie T

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Julie, this is so very exciting!!!!!!!! Can't wait to hear the next episode!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Data study

Thanks Lainy.......I'm just thrilled that someone took my theory seriously enough to send it on to those two researchers.  It may not come to anything...but  I'm not done with it there.  I plan to write to a number of researchers/specialists in bile duct cancer to see if I can light a fire under anyone else.  If my theory is right...I suspect it may relate to Intrahepatic CC...and as such, may explain some of the rise in ICC cases that I've heard about.   My husband talked to his doctor about H. Pylori and his take was that EVERYbody has it....and it isn't worth treating unless you get symptoms of an ulcer.  Also, he said that it tended to come back when treated...as it's hard to kill off.  But, if I'm right....then everyone should have screening tests for H. Pylori and if found, be treated.  It's not like the percentages are huge...but the end result of CC is catastrophic.  At the very least a blood test could be run for antibodies and if it comes back positive..then a poop test (for those who are squeemish.....do the poop test if the first test is positive) to determine if there is an active infection. 

Like I said...right now....after months of trying to get someone's attention...I'm just happy to have been taken somewhat seriously .  They may shoot it down....no scientific method and all that....but it's the only plausible explanation for a reason and way for me to get this cancer...and it just well could be the reason some others with no major risk get it.  I know...pretty cheeky...but at this point....I'm not backing down. 

I'll be posting about this again if I hear anything.  Meanwhile, I must get that letter finished and send out to other researchers. 

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Julie, don't let anyone discourage you as without ideas like yours we would be back in the Middle Ages! You go girl.
BTW Last weekend when I was in the hospital they quarantined my room and did a C-Diff as it could hamper my healing. No C-Diff and all the signs came down, I felt so unnecessary!!!  LOL

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Data study

Julie,  Good job on not giving up and getting someone to take an interest in your theory.  Can't wait to hear where this leads.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Data study

Lainy....yellow quarantine signs I'll bet.  I remember that at least half of the rooms on my nurses' station pod at Mayo had yellow quarantine signs.  I heard the word, "Vanco", and knew that it meant someone there was getting Vancomyacin....just about the only drug that kills off C-Diff anymore.  I'm so glad you didn't have C-Diff...the symptoms can be anywhere from several slightly formed stools a day (mild case) to a "lot" of watery stools ...maybe every hour or so for severe cases.  It is a horrible infection and lethal if not identified and treated right.  I sort of joke now about my short bout with C-Diff, but the wife of one of my husband's old work associates passed away from C-Diff while I was under treatment for it.  Her doctor didn't recognize what it was and did exactly the opposite of what he should have, which resulted in her colon perforating and sepsis.  I'm just glad your doctors took that extra step to make sure you didn't have C-Diff.  ............. Unnecessary...you Lainy...NEVER!!!!  smile

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Julie, problem for me is that C-Diff has same symptoms as UC but at least I know that I don't have the C-Diff. Actually the paper work was white with bright red borders! It was funny to watch all the Aides and Nurses put those hot gowns on a and gloves. Mmmm come to think of it the only one who didn't was my GI guy.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Data study

Lainy.....Mayo was all about yellow.....and yeah....I saw a team of doctors outside one room on my "nurses station pod" and all of them were putting on the masks, booties, yellow gowns and the doorway was covered with yellow warning signs.  Even then, most all of the doctors only stepped foot in the room and stayed back from the patient.  I can't believe your gastro guy didn't gown up....he must think he's invincible.  smile 

I figured that the UC was similar to C-Diff in symptoms.....either would be a pain in the......well....yeah.  smile 

I'm trying to get in as much fun things as I can before I start chemo again and something more happens. Today, my hubby is taking me to the art festival downtown....a good walk around the park for an hour or so and after that, I'm going for a haircut.  It seems kind of silly to get a haircut when I will probably lose some of all of this already thin hair (has thinned dramatically over the years from taking Atenolol...a beta blocker).  But, it's pretty much unmanageable and I need some "girl" time.  She'll doll up what I have for hair and make me feel good.  After that, it's time to sort out the toys and take what that little grandboy doesn't play with anymore to the consignment shop.  All he wants to play with is Thomas the Train.  smile   Tomorrow, the kids will be over here with him and we'll be outside to plant my flower pots.  It will be a good weekend.  Hope yours will be too.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Data study

Marion,

Hi. In reading this message stream, I am not sure I understand what database help you are looking for. But I would be glad to discuss it further with you, and others, to see if I can help in some way.

Take care,
Carl

Re: Data study

Carl...thanks for chiming in.  I am referring to the immense amount of information contained in the individual threads of this discussion board.  It is a painstaking job perusing each and every entry, collecting the data within this entry and then providing the statistics Duke referred to: patient age, treatment responses and ultimately the question everyone is looking to have answered: life expectancy. 

We must remember though, that advances for treatments are rapidly expanding, that each and every individual presents with their own biological and anatomical make-up, staging plays the most important role in regards to life expectancy, and that patients from 2006 have outcomes not compared to those of patients of today.  Hence, the data will be skewed in numerous ways including the individual reporting of each poster. 

I believe that the upcoming Global Patient Registry will answer many questions addressed on our site. 

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Data study

marions wrote:

Julie….to answer your question re: previous blood and tissue samples at Mayo, here is some preliminary information.
Samples cannot be used unless a prior consent form has been filled out.   
In the meantime, for those wanting to participate in the study and have appointments set up or are ready to schedule an appointment with a Mayo physician please, follow these steps: 
http://cholangiocarcinoma.org/actionalert2.htm
Nasra will get in touch with you.
As soon as we receive IRP approval, the Cholangiocarcinoma Foundation will provide you with explicit instructions.
Hugs,
Marion

This link is no longer active. Is the project still looking for participants or is it missing from the website update?  My husband is interested in participating.

Re: Data study

Oh, no, all the bugs are coming out with the new website.  Of course, the study is ongoing.  I will keep you posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER