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Viewing 15 posts - 1 through 15 (of 6,122 total)
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  • gavin
    Moderator

    Thanks for that Tarheelll.

    Gavin

    in reply to: Anyone Have Treatment with 5Fu Monotherapy? #99511
    gavin
    Moderator

    Hi there,

    I did a search on the boards for you using the search forum function and it threw up these discussions here –

    https://cholangiocarcinoma.org/db/search/5Fu+monotherapy/

    Not a lot to go on there I know. So I did another one for you on just 5FU and it came up with this, much more here.

    https://cholangiocarcinoma.org/db/search/5fu/

    I hope that some of that will be of use and interest to you. And I will be keeping my fingers crossed for you as well with regards to the treatment and hope that it works very well indeed.

    My best wishes to you,

    Gavin

    in reply to: Survived very long #99502
    gavin
    Moderator

    Catherine,

    I am so very sorry indeed to hear of the passing of your mum. Please accept my sincerest condolences. I lost my mum too just over a year ago so know how you are feeling right now. I wish there was something that I could say that would help ease the pain that you feel right now but know there are no words.

    Your mum did fight a long hard fight and both you and your mum together did not give up and kept looking for answers. I know how proud of you she would be in your quest to help her through all of this and to deal with it all.

    My thoughts are with you and your family right now.

    Hugs,

    Gavin

    in reply to: Ciitizen Webinar – Take Control of Your Health Data #99440
    gavin
    Moderator

    Hi all,

    Just a quick reminder about the Citiizen webinar on the 18th for those who may have missed the details about it. Further info and registration for it can be found in this link here –

    https://register.gotowebinar.com/register/218534936110332939

    Thanks loads,

    Gavin

     

    in reply to: Ciitizen Webinar Weds 20th #99350
    gavin
    Moderator

    Hi all,

    A quick reminder everyone that this webinar is tonight for those that are interested in it. The details are in the first post on this thread.

    Thanks all,

    Gavin

    in reply to: Ciitizen Webinar Weds 20th #99345
    gavin
    Moderator

    To the top once again as the webinar is upcoming soon. Details in the link below for those interested.

    Gavin

    in reply to: 10 years!! #99338
    gavin
    Moderator

    Hi Randi,

    Congrats to you my friend! 10 years is a long time and as you say, so much has happened to you in that time. You have certainly went out there and grabbed life by the horns and done so much in that time so further kudos to you for that too. And you even made it all the way over here to my side of the pond and now know what it means to get some scran!!!

    You along with everyone else here are most certainly not statistics and as I always said, stats are just there to be broken anyway! Yes much has changed here in the last 10 years and sadly many from back then are not with us now. But today is a good day Randi and Lainy certainly would say to you to go girl! Love hearing stories such as yours and I do hope that others will read it too. As for sure you will inspire many many people who do.

    My best wishes and celebratory hugs to you Randi!

    Gavin

    in reply to: Ciitizen Webinar Weds 20th #99333
    gavin
    Moderator

    THought I would bring this one to the top again in case anyone missed it.

    Gavin

    in reply to: Moms liver failure #99332
    gavin
    Moderator

    Dear Katie,

    I too am so sorry to hear of the passing of your mum, please accept my sincerest condolences to you and your family at this time. Having lost my dad to this disease in 2009 I know how you feel and what you are going through right now. But please do not beat your self up about this and what could have been or any possible misdiagnosis of your mum.

    Mary is right about how this cancer is unpredictable at the best of times and disease progression can occur very quickly for some people or not so much for others. In my dads case, he passed away 18 months after diagnosis. None of us can say for sure what happened to your mum as we are not medical professionals, but one thing I can say for sure is that you did everything you could to help your mum in her fight with CC and to help her in every way possible and I know how much that would have meant to her.

    I also lost my mum in November of last year and she like your mum was the matriarch of our small family. Again from my own experiences I can tell you that in time you will look back on the much more happier memories that you have of your mum. It will take time though and this period is different for everyone, but my advice would be to not focus on what might have been or could have been as we just do not know. Please look after yourself and know that we are here for you and my thoughts are with you and your family right now.

    My best wishes to you,

    Gavin

    in reply to: Phase 2 trail for CC shows promising results for pemigatinib #99225
    gavin
    Moderator

    Thanks for posting that Penny!

    Gavin

    in reply to: Aspirin to slow down CC #99208
    gavin
    Moderator

    Thanks for that Penny. And I do agree so much with Mary on Asprin use as it can do severe damage to the stomach and does have risks involved with regular use of it. I took it years ago as a standard pain killer sometimes for sore heads etc and years later ended up in hospital with a stomach ulcer that burst. Was not nice to say the least and I still have to take medication now to keep it in check even after all of these years.

    Thanks,

    Gavin

    in reply to: Oktoberfest #99153
    gavin
    Moderator

    It was Oktoberfest in Covington with polkas, wienerschnitzel, lederhosen and beer galore

    https://www.nola.com/news/communities/st_tammany/article_70f65b4e-deed-11e9-ab38-dbf3e840742f.html

    in reply to: ESMO 2019 – Some abstracts from the meeting #99138
    gavin
    Moderator

    Video from ESMO with Prof Valle.

    Juan Valle reports on key results from ESMO Congress 2019 on LBA10_PR: ClarIDHy: A global, phase 3, randomized, double-blind study of ivosidenib (IVO) vs placebo in patients with advanced cholangiocarcinoma (CC) with an isocitrate dehydrogenase 1 (IDH1) mutation Produced by the European Society for Medical Oncology https://oncologypro.esmo.org

    Gavin

    in reply to: Oktoberfest #99095
    gavin
    Moderator

    FOX 8 News shares details about the Oktoberfest happening this Saturday, Sep 21, 2019. Come and celebrate with German food, dancing, music and drinks.

    For more details – https://hosannalutheran.com/oktoberfest/

    Gavin

    in reply to: Offsetting the Cost of Cancer #98997
    gavin
    Moderator

    Hi Mary,

    Thanks loads as always for all of your extra thoughts and links, very helpful and useful to all! I think it might have been Stacie that flagged this article up, or maybe it was Melinda, not sure now! But yes, great info as you say.

    We also have a page here on the site that contains links to other organisations that can help with financial things involved with and about CC. I think that there was an organisation that helped with travel costs as well for patients and families travelling for treatment and stuff but can’t remember exactly what the name was. The link below though has a lot of other links in it that should be of help to people.

    https://cholangiocarcinoma.org/for-patients/resources/

    Thanks loads for your post Mary and helping me to jog my memory as well on this issue!

    Gavin

    PS – I think in the UK as well newly diagnosed patients can be fast tracked through the application for benefits after diagnosis and that is something that the social care team in the hospital can do for you. At least they did when my dad was diagnosed and because he was applying in the hospital through the social care team the benefits agency did not question anything at all and was helped straight away. I guess that many countries will have different schemes etc.

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