Forum Replies Created
December 16, 2019 at 1:00 pm in reply to: Ciitizen Webinar – Take Control of Your Health Data #99440
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 –
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.
To the top once again as the webinar is upcoming soon. Details in the link below for those interested.
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!
THought I would bring this one to the top again in case anyone missed it.
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,
GavinOctober 28, 2019 at 10:17 am in reply to: Phase 2 trail for CC shows promising results for pemigatinib #99225
Thanks for posting that Penny!
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.
It was Oktoberfest in Covington with polkas, wienerschnitzel, lederhosen and beer galore
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
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/
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.
Thanks loads for your post Mary and helping me to jog my memory as well on this issue!
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.
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.
Hope that you can get some relief for this Hatice.
GavinAugust 6, 2019 at 3:42 am in reply to: Remembering Walter Payton on What Would be His 65th Birthday #98944
Thank you Cindy! Jarret Payton wearing his CC bracelet, brilliant!
GavinJuly 7, 2019 at 6:22 am in reply to: Prognostic immunohistochemical biomarkers of chemotherapy efficacy in biliary tr #98832
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,