Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Jill,
This is pretty much what the BILCAP trial is measuring. It takes time but it has been collecting participants for a good few years now. Doctors hope it will show the benefit or otherwise of chemo following surgery.
Kate

Marion…I am curios do we have anyone in our “family” who has been cancer free 5 years (isn’t that the majic number)? I don’t mean survived or lived with CC for that time, but actually cancer free.
Lots of prayers for all in the fight-Cathy

Hi,Marion,
We can start simple,we had 1600+ members; we can start with the current members who are caretaker or patients themselves or we can set a time frame(ie: only for patients who had cc in the past 5 years etc.).
If we can give funding to help research on cc,we can hire 2 college students major in statistic or med students for a summer or winter break job to go thru each entry and fill in the banks or itemize of the info we needed provided by your son(the epidemiologist).The reason for 2 students instead of one is for cross references.
Our members may just want to know each other better and may not need in details survey info.like the one I suggested a while ago for the purpose of research.
On the same note,if you can please let the board members in the phone conference know that my suggestions about the up date of the topics changing in the forum of research on this site to see what they think.

If I may suggest,if we can

1. Expand “chemotherapy” on that experience forum ,put it first on the list as “Systemic treatment options “—chemo therapy ,molecularly Tagareted therapy,immunological therapy and others ” to reflect the current progress of treatment plans available.

2.Move the Radiation to 2nd place on the forum to reflect the importance of it and change the entry to “Radiation Treatments and options” to reflect Radiation is a viable and important treatment option for CC.

3. Combine “resection and transplant”and change to”Surgery,Resection and Transplant Treatment options” into one entry and put it as #3 on the list because all use the surgical technique as the means to achieve their goal.

4. Change the “side effects” to “Adverse Reactions and Side Effects” to reflect other problems that is not related to medications only(ie: stents dislocation; problems caused by disease state. eg. ascites and infections etc.)

4. Change the “alternative treatment” to “complementary and alternative treatment-CAM” to reflect the up to-date usage for discussion of the topic.

5.Create a new entry like” Bits and Pieces of Information “to share and update about cholangiocarcinoma.” — a few lines of information( small entries) that we can enter and share without long entry after research.
Thanks for listening.
God bless.

Hi,All
I always think that whoever and what ever our members contribute to this web site,including the names of,the messages they put on this web site and the discussions they have with each other on this web site and their sugestions and personal info such as age,gender,stage of cancer etc. for all the past,current and future members will be the property of the cholangiocarcinoma once members post their info. on this web site.

I am not a lawyer,but a 2nd opinion on the” legal matter question” may be needed to clarify “Is all the info. provided by our willingly members are the property of the CC web site? “;or can the web site put a notice out saying that once you sign on to this web site, all the info. will become the property of the cholangiocarnona foundation and does not need any consent to use the info that submited by members.And for the past and present members who already here ,this web site can post a notice for our members to agree or disagree the disclosure policy and if they agree ,then we can start a small request like Just-jill or Lainy suggested or do some findings of our current members who have cc. If some don’t ,then we just omit them in our research in the future.
I thing it is fun and useful to know our members more.After all we are a special family. But most if not all ,it may provide info. that may help all of us in the long run.
God bless.

Percy, you are the best! Just out of curiosity could we not do our own survey, just to see what we come up with on our Board? I am always curious and most definitely tenacious! It seems to me that we have more cases East and West Coast for instance, then midwest. I would like to know:
Who served in Korea and Viet Nam
What state/country someone grew up in.
What kind of treatment surgery, Cyber Knife, Chemo Radiation……..
How long they had CC.
It also seems like we have quite a few Asians but hardly any AfroAmericans.
The list could go on and on. I am always curious. Just wanted to know what you thought about doing this?

Well, for some reason I believe that everyone on this Board is way above average in every way possible! Sorry couldn’t resist.

Thanks Ladies.

But we need statistical analysis. Collection, examination, summarization, manipulation and interpretation of quantitative data provide underling causes, patterns, trends, etc.

Marions, don’t take this the wrong way, but, this sounds like some government run mumbo jumbo. It would be simple enough to poll the members here with such choices as:

did you or you loved one, have chemo following surgery….Yes, or NO
Date of Surgery,
Date of Death, or
Length of Survival thus far.

Maybe I am too simple minded….