gavin
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Hi Pat,
Thanks loads for the update on the meeting, sounds like you all had a blast in so many many ways! Stripping too…..what on earth was going on there!!!! Ha! Can’t wait to see all of the photos of everyone from the meeting, I love seeing that every year! It must have been great for everyone to meet one another, connect with each other and share stories and experiences as well.
I guess that from this meeting like the other ones there will be something put up on the website, a video or photo montage as it were of the meeting as a whole and I can’t wait to see that as always. Thanks for attending Pat and for letting us know how it went! Sounds like you had a great time.
All the best,
Gavin
Hi Mary,
Great stuff, thanks loads for posting them all here! And of course, we have our own blog here on the site too, Cholangio what?
https://cholangiocarcinoma.org/get-involved/cholangio-what/
Hugs,
Gavin
Remember all to tune into our broadcasts live from the meeting in Salt Lake City. You can view through this link now –
https://www.micro.site/ccf2018
And if on twitter and you want to get involved with questions etc, please use #ccfac18
Gavin
Great stuff Tia, will see you there, so too speak! I can’t be there in person either, but will get there one day!
Hi Semih,
Thanks for letting us know about your visit to the Onc on Monday. I hope that goes well and that they will be able to help find the right trial for you. Good luck with that and please let us know how that goes.
My best wishes to you,
Gavin
Hi Semih,
Welcome to the site. Karend asked me to post this info for you as she is having issues right now posting on the boards for some reason. So the following is not from me, it is from Karend.
All the best to you,
Gavin
Hi Semih!
Melinda Bachini may be able to help you connect with someone in the Netherlands, or at least with the family of one person I know who lived in the Netherlands. He attended the CCF meeting in Salt Lake City back in 2016 I believe, and had been receiving care at Memorial Sloan Kettering in NYC. He would fly back and forth to receive treatments. I’m probably remembering incorrectly, but I thought he had an HAI pump.
This support group on Facebook is super helpful too https://www.facebook.com/login/?next=https%3A%2F%2Fwww.facebook.com%2Fgroups%2FCHOLANGIOCARCINOMAsupportGroup%2F
You may very likely find members who are from Europe or other countries, and perhaps discover how they are navigating treatment or seeking acceptance into clinical trials within the US or elsewhere. It is a really wonderful group, and ties in well with the information provided here on the discussion board. 🙂
Here is some information for you from MSKCC (Memorial Sloan Kettering Cancer Center). https://www.mskcc.org/cancer-care/types/gallbladder-bile-duct/treatment
Clinical trials info/available trials at MSKCCÂ https://www.mskcc.org/cancer-care/clinical-trials/search?keys=cholangiocarcinoma&disease=All&phase=All&investigator=
Drs. Ghassan Abou-Alfa and William Jarnagin are regular attendees of the CCF annual meeting in Salt Lake and are the PIs on these two clinical trials. You could always reach out to them directly and ask their nurses/clinical trial assistants for advice.
-Karen
Hi Darragh,
Welcome to the site, although I am sorry that you have had to find us all here. But I am glad that you have “delurked” and joined in with us all as you are in the best place for support and help and I know that you will get a ton of both from all of us.
Thanks loads for sharing everything that is going on with you and what has happened with all of this. You sure had had a ton of stuff to deal with during all of this and I so love to hear that fighting attitude of yours, excellent! From what I read from your post it also sounds like you have a great support network around you with your wife and son, and now you have all of us as well fighting with you in your corner so well done once again from coming out of the shadows as you say and delurking! I know that we have a ton of lurkers worldwide who just want to read the posts and stuff and hopefully you posting now will help some of them come on board as well.
You are ALL most welcome here if you are reading this!! We don’t bite!
Just wanted to throw this in as well in case you didn’t know. Prof Valle has been with the CCF for a long time now and is the Vice Chair of our Medical Advisory Board. He, along with a load of others have made many presentations at our Annual Meeting in Salt Lake City and hopefully he will be there again at our next one very soon.
https://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/
Anyway, just thought I would throw that in in case you did not know that and I am real glad to hear that you have consulted with him as well. He is very experienced in dealing with patients with CC as you say and has treated quite a few of our members or their loved ones.
Looking forward to hearing much more from you Darragh.
My best to you and your family,
Gavin
Hi Mich,
Thanks for letting us know about your getting onto the trial. Please if possible could you let us know how it all goes if you can? I will of course be keeping my fingers crossed for you on this and hoping for the best possible results as well. I hope it all goes well and a ton of positive vibes are coming your way from over here!!
Hugs,
Gavin
Hi Mark,
Welcome to the site. Real sorry to hear what you are going through with everything but am glad that you have joined in with us here as you are around people who care and know how you are feeling. And of course, we will all help as best as we can. We do not have all of the answers but as I said, will help when and if we can.
You reached out to Rick and he got in touch with me to see if I could help with your questions on the mechanics of the board and how it works. So please, if you have any specific questions then ask away and I’ll do my best to help.
As to the threads on the boards, yes everyone in the community can see the posts whether they are logged in or not. To reply to a posting in a thread, all you have to do is scroll down to the bottom of the page and type a response to any post in the text box then hit submit and it will be posted on that thread. The most recent posting on a thread will be at the top of each page of that thread. Eg – once I finish this message and hit submit it will go to the top of the page and everyone will see it. Then if someone else posts on your thread then that will go to the top and mine will be the second post on the page. I hope that helps?
People do not have to reply to a post to read them, anyone can read them. You can also message soemone directly if you want to as Mary has said to you. It is all quite easy once you get the hang of it! But please, do not be afraid to ask for help on anything board related, there are no silly questions!
That is great that you are looking to attend the annual meeting in person and I know that you will get to meet a load of people there. And no doubt you will get a lot of answers in person for the many questions that you no doubt will have.
As I said, I am real glad that you have joined us all here, but of course wish you didn’t have to be here. And I know that you will get the support from everyone that you have been looking for. Keep on posting and know that we are all here for you Mark.
My best wishes to you,
Gavin
Thanks Deb! Yep, I too wish for 2018 to bring more of everything, research, breakthoughs, new treatments etc for CC! Lets hope so!
There definitely seems to me that there is much more going on now on the research front than say a few years ago. Progress does seem to be being made but we need to keep pushing don’t we! Lets hope that 2018 will be a good year for all!
Hugs,
Gavin
Hi Debbie and Mary,
Thanks for your kind words and as always I am very glad to be of help. And yes, you both are so right in what you say about keeping on top of any changes what so ever and reporting that to your doctors or oncs as soon as possible. Making lists of thing to mention to my dads team always helped me in meetings with them no matter how small or insignificant my dad thought they were! The peace of mind aspect you talk of Mary is very important I would argue.
Yes the mets to the scalp I had not heard of before and seems very rare indeed. Only finding 2 patients for their pubmed piece could show the rarity of these mets to the scalp. But, you are both right in that everyone needs to be vigilant about everything to do with CC!
I hope you both enjoyed the New Years and I wish you all the best for 2018!
Hugs,
Gavin
Hi Catherine,
Yay to your mum being home now, great stuff! And as you say, a Christmas to remember with special memories and your mum was able to attend the graduation of your daughter as she wished. I know how much that would have meant to both your mum and your daughter. Fingers are crossed for a speedy recovery for your mum and tons of positive thoughts are coming your way from over here.
Hugs,
Gavin