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  • 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.

    in reply to: Severe constipation #98977
    gavin
    Moderator

    Hi Hatice,

    Sorry to hear this. My dad suffered with this as well and he was given Lactulose for this which helped him a lot. He tried Movicol first which didn’t really work too well and I think that that has been the case for quite a few here  over the years as well. As Mary says though, any laxative should be discussed with your doctor first and they would no doubt be able to prescribe something for that for you.

    I have a few links for you as well on this issue from the UK and I hope that they will help.

    https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/eating-problems/constipation.html

    https://www.evidence.nhs.uk/search?om=%5B%7B%22srn%22:%5B%22Macmillan%20Cancer%20Support%22%5D%7D%5D&q=constipation+and+prune+juice&sp=on

    https://www.cancerresearchuk.org/about-cancer/coping/physically/bowel-problems/types/constipation/causes

    https://www.cancerresearchuk.org/about-cancer/coping/physically/bowel-problems/types/constipation

    https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/constipation

    Hope that you can get some relief for this Hatice.

    Gavin

    gavin
    Moderator

    Thank you Cindy! Jarret Payton wearing his CC bracelet, brilliant!

    Thanks loads!

    Gavin

    gavin
    Moderator

    Hi Laurens,

    I will keep my fingers crossed for you both here and hope to hear good news from you about further treatment options. Please do not give up hope. Keep looking and keep fighting as well.

    My best to you both,

    Gavin

    gavin
    Moderator

    Actually, just double checked ENS link again and it is only this one that is a hyper link that will take you to their website.

    Radboud University Nijmegen Medical Centre (Nijmegen)

    The other ones for Holland you would need to put into google to get the exact details for them.

    Thanks,

    Gavin

    gavin
    Moderator

    Hi Trieneke,

    First off, welcome to the site. I am sorry that you had to find us all here and I am very sorry to hear about your son and what you are all going through right now. I do hope that we can help in providing some more information that will be of use to you here. Mary has given you an excellent  run down on molecular profiling and some options here and there is not much that I can add to that. And like Mary also, I am not a doctor or medical person so can’t give specific medical advice to you.

    I have some links for you and hopefully they will be of use here. Mary mentions ENS-CCA and here is their website –

    http://www.enscca.org/

    A lot of info on there and they have a section on Holland with some contact details –

    THE NETHERLANDS
    University of Maastrich (Maastrich)/University of Aachen (Aachen)
    Erasmus MC Hospital (Rotterdam)
    Academic Medical Center (Amsterdam)
    Radboud University Nijmegen Medical Centre (Nijmegen)

    Follow the ENS link above, scroll down the page to the Netherlands section then you can click on the names of the hospitals in Holand and that will take you to the website for more contact info. As they are listed on ENS-CCA I would class them as very qualified to deal with CC patients etc.

    If you wish to seek help or info from hospitals in the UK then this list is very good for specialists in CC. They are all very experienced again in dealing with patients specifically with CC.

    Specialist Centres

    Here is the link to the European Clinical Trials register –

    https://www.clinicaltrialsregister.eu/ctr-search/search?query=cholangiocarcinoma

    I did a search for you in that for CC and that link should give you all of the trials for CC in Europe.

    This is for CC and imunotherapy –

    https://www.clinicaltrialsregister.eu/ctr-search/search?query=cholangiocarcinoma+immunotherapy

    I could not find anything on the EU database for CC and molecular profiling trials.

    Here is the link to SWOG S0809 that Mary mentions as well –

    https://ascopubs.org/doi/10.1200/JCO.2014.60.2219

    I so hope that some of that will be of use to you and your son Trieneke and that you will be able to get some further treatment options through it. Please do not give up though. There has been much progress made lately and more is happening all the time. Please keep coming back here as well and let us know how things go here. And know as well that we are all here for you and will help as best as we can.

    My best wishes to you and your son,

    Gavin

    in reply to: Entinostat in Combination With Nivolumab #98759
    gavin
    Moderator

    Thanks kgroft, no apologies are ever needed here though! I replied to you over on the other thread, before I seen this one. And please, feel free to post on any threads that you want to! You go right ahead.

    Thanks,

    Gavin

    gavin
    Moderator

    Hi Kgroft,

    Thanks for letting us all know about this trial and that your husband is on it. I will of course keep my fingers crossed for him and for the best possible outcome for him as well. I assume that his onc is aware of the side effects that your husband is experiencing right now and hopefully he will be able to cope with them.

    Thanks loads as well for offering to keep us all updated on his progress, thats great. But please do not feel any pressure or anything to post and stuff as you will have a lot to deal with with all of this.

    My best wishes to you both,

    Gavin

    gavin
    Moderator

    Hi Mary,

    Thanks for the clarification on how things stand with you post surgery. And I too am very grateful that you are NED after these 42 months, fingers are crossed for you here for the next 42 months and more to continue with NED! Yes the amount and type of the abstracts that are coming out here each year at Asco and other conferences throughout the year is very encouraging and I do feel progress is being made. I see a lot more stuff in general, read about things and hear a lot more in general that is positive for progress and I believe as always that we will get there in the end!

    My best to you as always Mary and hope you are having a great weekend!

    Gavin

    gavin
    Moderator

    Thanks for that Mary. And thanks as well for sharing what you did with the results of the abraxane and showing it to your onc. I hope that that will be an option for you and thanks loads for sharing it with everyone. I always say to people that if they see something in the material and studies that I link to here then to print it out and show it to your onc to see what they say. Just as you did!

    Yep, like me and most of us I guess we all find a lot of the medical literature tough to understand so people could just jump to the conclusions to get the highlights of the piece. Usually the conclusions are a lot easier to understand for us all.

    I think that there were 89 or so abstracts that came out last night from the upcoming ASCO annual meeting for this year and that seems to be more then last year. Actually, it seems to be increasing every year which I would say is a good thing. The more research we get the better!

    I put most of them on here like every year but some didn’t seem to be related to CC too much. And I like to put them on the site individually so that if people are searching for say XYZ then it will show up in the search forum function rather than just put a link up to the whole list of them in one go.

    But here is the link anyway to all of them if anyone wants to go through them all –

    http://abstracts.asco.org/239S/search.php?zoom_query=cholangiocarcinoma&op.x=32&op.y=16

    There are a lot of them!  Most of the better CC ones are on the first 6 pages or so.

    Thanks Mary!

    Gavin

    gavin
    Moderator

    Hi Mary,

    Thanks for that and I am glad to be of help as always. And yes, I so agree with everything that you say on the trial and results etc. Let’s keep fingers crossed that the data from phase 3 is good as well! Your point as well about chemo leading to possible surgery for those previously deemed inoperable is so important too and this would have been good for my dad had he been able to go down that road. Much has changed since he was diagnosed in 2008 and that is good, but there is still so much more to do yet as I am sure you would agree. We will get there though!

    Thanks loads Mary!

    Gavin

    P.S One thing that I would add about research and stuff is that compared to what I used to find when I started looking for it all  and posting links about it back in 2008 and compare that to what I come across now, there has been a huge increase in pieces, news, data and studies etc now compared to back then. The progression has been gradual but seems to be getting quicker now from what I find online and read about. But we still want more and better don’t we!

Viewing 15 posts - 31 through 45 (of 6,141 total)