gavin
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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
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
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
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
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
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
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.
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.cancerresearchuk.org/about-cancer/coping/physically/bowel-problems/types/constipation
Hope that you can get some relief for this Hatice.
Gavin
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
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
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 –
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.
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
