• From: Metairie, LA
  • Registered: Tue, 09 Oct 2012
  • Posts: 82

Topic: CC Foundation Database?

I've been trying to search the discussion boards posts to learn more about the experiences of those patients whose situtation most closely matches my wife's, which was ICC, one 6.4 cm poorly differentiated tumor contained in liver and one positive hilar lymp node, 72% resection, negative margins 2 cm from tumor, R0.  Chemo and radiation has not yet started.

Has anyone created a database of the patient information provided in these discussion boards?

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.
  • From: California
  • Registered: Mon, 20 Aug 2012
  • Posts: 274

Re: CC Foundation Database?

Not that I'm aware of. Still, sounds like there are so many who seem to have same cancer type, location and stage and yet different responses to treatment and different complications that arise. The medical studies would be more scientific and of larger population of people with CC than just the ones on this discussion board. Admittedly, they're hard to find and decipher (I've tried).

Willow
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: CC Foundation Database?

Not a bad idea. Perhaps a questionnaire that members can fill out with standard questions like: Type of CC, size of primary tumor, etc.  with boxes with answers __ICC  __ECC

You should post this suggestion in the Suggestions area on the discussion board.

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Registered: Fri, 12 May 2006
  • Posts: 8,168

Re: CC Foundation Database?

I am sorry, Bruce, as of yet we have not created a data base.  But we are in the process of doing just that and expect to be off and running by the beginning of next year.  Given that we don't have to abide by institutional regulations I expect our data base to comprise the largest collection of Cholangiocarcinma patients to date.
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
  • From: Metairie, LA
  • Registered: Tue, 09 Oct 2012
  • Posts: 82

Re: CC Foundation Database?

Thanks Marion.  That's great and with 2,236 members I suspect you will have enought cases in all the categories you select to arrive at some statistical significant conclusions.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

6 Reply by PCL1029 (edited by PCL1029 Wed, 07 Nov 2012 18:28:33)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: CC Foundation Database?

Hi,
Just in case,some examples for CCA here.


http://www.cholangiocarcinoma.org/punbb … hp?id=6811

http://www.cholangiocarcinoma.org/punbb … 612#p49612

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • Registered: Fri, 12 May 2006
  • Posts: 8,168

Re: CC Foundation Database?

Bruce...I am very optimistic about the outcome of our data collection.
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
  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
  • Posts: 87

Re: CC Foundation Database?

Interesting, I was thinking about the same thing for couple of months and was going to start a new thread with the list of questions and answers... I'm applications analyst and therefore have a "need to analyze data"!
What would be the best location to start it though?
Thanks, Alla

  • From: Metairie, LA
  • Registered: Tue, 09 Oct 2012
  • Posts: 82

Re: CC Foundation Database?

I was thinking of a spreadsheet with a row for each user ID and columns for CC data, such as Randi suggested, including such items as type of CC, operable?, size of main tumor, amount of liver resected, differentiated type, post surgery classification (R0, R1, R2), lymph nodes involved?, date detected, surgery date, hospital, surgeon, chemo used, radiation used, etc.  In this way a multiple sort can find the cases that apply to your circumstances.

Including the user ID will allow us to search all the postings for that member's posts and additional details.

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.
  • eli
  • eli
  • Legend
  • Offline
  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 561

Re: CC Foundation Database?

Bruce, have you tried looking up medical articles on PubMed?

When I was in your position -- i.e. before my wife started chemo/radiation -- I spent countless hours on PubMed. It's a treasure trove of information. Most articles are hidden behind a paywall, but the key statistics is usually summarized in the article Abstract. Quite a few articles are available in full text.

The key to searching PubMed is to repeat the same search using many different combinations and permutations of keywords. It helps if you know relevant MeSH terms:

http://www.nlm.nih.gov/mesh/meshhome.html

If you are technically inclined, you can learn PubMed query language. To give you a taste, here's the query that I use to search newly published articles about CC:

cholangiocarcinoma OR (((bile duct) OR biliary OR hepatobiliary) AND (cancer OR neoplasm))

As to the spreadsheet that you proposed, it might be feasible to implement going forward. I very much doubt it's doable looking back. The information is scattered around many many posts (at best), or is not available at all.