Discussion Board Forums General Discussion Wikipedia and cholangiocarcinoma – what do you think?

Viewing 15 posts - 1 through 15 (of 16 total)
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  • #47800
    monkeybutt
    Participant

    There is one key difference between Wikipedia and a traditional encyclopeda. Wikipedia entries don’t have to be brief. Fluffing an article up with nonsense may not pass such review as there actually is, but as long as you’re providing material information there really is nothing hindering anyone from adding more info, or making the language a little less harsh. Or rewriting the whole thing for that matter!

    #47799
    lainy
    Participant

    Guess I never read Wiki, always felt what can they tell me that I don’t know? Just kidding but I had this impulse to say that!:):)

    #47798
    jim-wilde
    Member

    Malc, I’ve never read Wikipedia stuff on CC, and I wouldn’t put too much credence in it. It’s written by non-paid and unsupervised contributors like you and I, and sometimes by experts. I’ve read some topics there that are clearly not true (areas I know very well from professional experience). Unfortunately, with a subject like CC, there’s a huge potential to scare the daylights out of people unnecessarily.

    I don’t presume to be an expert on CC, but I’ve survived for almost two years post surgery and still appear to be clean. I have chosen to be optimistic and don’t try to count the days ahead, but enjoy now. It’s just as well we don’t know our whole book ahead of time. There’s just too little data to make very many broad generalizations about CC.

    #47797

    Sara – if it’s any use to you, AMMF has put together an A – Z list of fundraising ideas which our supporters can download from our website.

    You can get this from the following page:

    http://www.ammf.org.uk/get-involved/

    Have a look – it might give you some ideas!

    Helen x

    #47796
    sara
    Member

    Katja – that is fantastic that y’all are in the process of raising funds for AMMF. Please keep up the efforts, as we are all in this together.

    If you have time, could you please forward a summary of how you raising money to assist research? We would love to pull together some stories to help inspire others to host local fundraisers.

    Happy Valentine’s Day!

    #47795
    katja
    Member

    Thanks for welcoming my dad everyone! I can agree with what he says about wikipedia, in that it is terrifying, although I wonder about the word ‘incurable’ because I don’t think there are many ‘curable’ cancers.

    It was actually the pancreatic cancer website that gave me and my mum hope, as they say that ampullary/bile duct/head of pancreas tumours are more easily detected, and have a more positive prognosis.

    I did notice that cholangiocarcinoma.org comes up higher in the google ratings now than it did when I joined over a year ago. What we need is more research so that wikipedia can cite more positive outcomes. And that, Dad is where your trial comes in, and the money we raise for AMMF through our various ventures (has my brother thought through his Land’s End to John o Groats cycle?!). As Marion says we are looking at research at least five years old.

    Andie, don’t think anyone can wait until the day when Joseph is running around with a football/rugby ball, least of all him. He’s already a little whirlwind.

    #47794

    Hi Malcolm

    I have just one comment to add to what the others have said – you are not a statistic!!

    Keep thinking positive, and have a wonderful trip …

    Helen

    http://www.ammf.org.uk

    #47793
    malc2073
    Participant

    Thank you Sara – I suppose it is google and its tendency to throw the site up near the top of any list.

    #47792
    sara
    Member

    Completely understandable. Wiki can be helpful in some cases, like when I need to know where Cabinda is located in Africa. However, keep in mind that anyone can edit Wiki, so the information found on Wiki is not always correct. This can be quite entertaining when you are looking at a Wiki entry for an actor or politician, however it can be quite frightening when you are looking at a disease. Instead, I usually focus on medical sites when doing searches on disease – like PubMed, the National Cancer Institute (NCI), the Mayo Clinic, Johns Hopkins, etc.

    #47791
    andie
    Participant

    I must admit my Dad does not use the internet so I never told him what I had read, only the positive stories.

    Grandson taking first steps, how wonderful but tell Kate this is when the trouble really starts lol, and he will have you kicking a football (or Rugby) around before you know it!.

    Best wishes

    Andrea

    #47790
    lainy
    Participant

    Oh, My Bad! I didn’t recognize your name but of course your are Kate’s Dad. I just want to wish you good luck on your upcomming scan! Wait! You don’t need any doctor, best perscription? That Grandson!!!!!!!!!!

    #47789
    malc2073
    Participant

    Hi Andie – greetings passed on as Kate is here for Sunday meal and we are watching grandson take his first steps – priceless.

    Sorry to hear of your dad’s experience. The Wikipedia page knocked me sideways, backwards and upside down in two sentences

    Thank you for your good wishes. I do feel well right now if a little tired from at trip to Twickenham to watch the rugby yesterday!

    #47788
    andie
    Participant

    Hi Malc,

    I have just read your previous posts and realised you are Katja Dad! Welcome to the site and I am so pleased you are feeling so well.

    I met with Professor Lodge in November but unfortunately it was too late for my Dad to be treated.

    When my Dad was jaundiced I went on the net with his symptoms and came up with Cholangiocarcinoma. Then went on Wikipedia and had the fright of my life. Luckily I found this site and it’s helped me and my Dad get through the last 12 months.

    Good luck with your forthcoming scan.

    Enjoy your trip and say hello to your Katja for me

    Best wishes

    Andrea

    #47787
    malc2073
    Participant

    Hi Lainy
    My post was inspired by the previous “do you consider to be cured” post – I think a couple of ‘mights’ or ‘coulds’ would help with the Wikipedia wording and that this would balance the negatives and give more chance for us to work on that “attitude is everything” frame of mind. I understand that the medical profession avoid that form of wording however.

    My cc was distal located, staged at 2B – whipple operation by Mr K V Menon of the Leeds liver team headed by Professor Lodge.

    I completed the Xeloda capcitebane trial in August 2010 and have had a clear scan in September with another due at the end of this month.

    5 good years sounds an amazing achievement for Teddy and yourself and the kind of info that a truly ‘encyclopaedic’ publication should be including prominently.

    Malc

    #47786
    lainy
    Participant

    Dear Malc2073, the problem is that Wikipedia is just that, an Encylepedia. It gives the hard cold facts. But you see, we have all learned not to listen to that. I believe that if you google Cholangiocarcinoma, you do get medial facts but also treatments. The cold hard fact is that right now CC is rated lowest, below Pancreatic Cancer. It is an Orphan Cancer with not much research as it is rare and a lot of Doctors do not even know that much about it. That is the down side. UPSIDE: We are finally starting to be noticed! Research is beginning. We have survivors of years that were told months. I think you might want to take a trip through some of our posts. We have a search button at the top of the page and just type in something like survivors and posts will come up. What was your prognosis. Where is the CC located? We have found that a positive attitude helps so much and guess what? We were not born with expirations dates. My husband had a double Whipple (first one was aborted) in 2005 at the age of 73. He passed 2 months ago but the Whipple bought him 5 good years. CC has many twists and turns it is truly a rarity. Are you underany treatment at the moment? I would say, if your Whipple was 2 years ago you are doing quite well.
    Plan the trip, anything can be cancelled if it has to be but if you are doing well, why not go?

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