Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Discussion Board Forums Surgery, Resection & Transplant Treatment Options Overall survival peri-hilar cholangiocarcinoma: R1 resection with cura

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #51862
    marions
    Moderator

    Thanks Kate, for reminding us of the BILCAP trial. Will you keep us posted on this (if possible?)

    Hugs
    Marion

    #51861
    katja
    Member
    Just_Jill wrote:
    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….

    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

    #51860
    marions
    Moderator

    Cathy…..absolutely there are numerous CC survivors out there.
    I have encountered numerous, cancer free, CC patients who had received a diagnoses anywhere from 5 to 10 years ago.
    We have to remember that these people don

    #51859
    jathy1125
    Participant

    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

    #51858
    marions
    Moderator

    Got it, Percy. I will pass this on.
    Thanks a million,
    Hugs
    Marion

    #51857
    pcl1029
    Member

    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.

    #51856
    marions
    Moderator

    Great thought, Percy. Our president, Sara, and our board member Demitrious both, are attorneys and they would be able to handle the legal matters for us.
    In addition to working in my husband’s law office and my past and present work as an advocate, I have been part of numerous discussions with the NCI and other Medical/Scientific Institutions re: ramifications of use of proprietary data though, I strongly believe solving this issue will be the lesser of our problems.
    The major obstacles present the collection of accurate data from our past members which as I had mentioned presents the bulk of information.
    We could however, start the process as soon as possible but in this case it will take some time (year or years) until we have a significant cross section of information available to us.
    What do you think? A board phone conference is scheduled for this week and I would like to present everyone

    #51855
    pcl1029
    Member

    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.

    #51854
    marions
    Moderator

    Hi all,
    collecting the ongoing data on this site had been contemplated by us for quite some time. In fact my son who happens to be an Epidemiologist had prepared a questionnaire several years ago however; we simply have not had the manpower to compile the survey. Percy, you provided us with another, more extensive questionnaire which could set the guidelines for us.
    However, we are presented with some obstacles.
    At present the bulk of information is presented by previous members and retaining the updated, correct, information may be difficult at best. Additionally we would have to include a consent form in order to release The Cholangiocarcinoma Foundation from any liability. A Statistician would need to analyze past data in order to provide the projections and this person would have to volunteer his/her time. (We are a volunteer organization.)
    But, in the past we have had the ability to overcome major obstacles and I don

    #51853
    lainy
    Participant

    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?

    #51848
    pcl1029
    Member

    Hi,
    I agreed with your suggestion;I did submit for a similar request for the population of cc patients here a while ago. I think the board still consider about whether we have enough manpower to do the survey that I suggested or it may not be a survey that are looking for and the legal aspects of the survey.(my is a bit longer,about 2pages long).

    Yours seems to be much easier to do.

    My personal thought about CC is that,even 2 patients have the same time frame,same diagnosis,same size of the CC, same location,same treatment, same caretaker etc. the outcome for each of the patient will be still different. I do not know why I have that kind of intuition but even so,it will not hampered my research on CC.
    I know one thing for sure,if I try my best I will have no regret.

    God bless.
    God bless.

    #51852
    lainy
    Participant

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

    #51851
    jladams
    Member

    Hello Just_Jill and Lainy,
    I agree that a much bigger sample size is needed. I also believe that qualitative research needs to be completed on CC.
    I hope I am way above average for survival with this cancer.
    Johanna

    #51850
    just_jill
    Member

    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….

    #51849
    marions
    Moderator

    Jill…..this is one study conducted with 69 patients. We would need studies with 1000 times as many patients in order to have a more accurate result. And than this very same study, taking in another part of the world may still differ from another. Studies are just that

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