Any PDT Success Stories for CC?
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I forgot to mention the issues with light sensitivity and PDT treatment so thanks for mentioning them Marion. Welcome back by the way!
Tracy, please ensure that your mum does everything that she can to protect her eyes and skin from any direct light for a while after the treatments. Please do NOT take that issue lightly! I mention my dads experiences with the light etc in my postings here on the site.
Hugs to all,
Gavin
Tracy…..it’s wonderful to hear of your Mom’s positive response to either Gem/cis, PDT, or the combination of both treatments. How is she fairing with the light sensitivity?
Hugs
MarionHi Tracy,
Welcome to the site and I am sorry to hear about your mum. But I am glad that you have joined us all here as you will get tons of support and help from everyone here.
My dad had PDT back in 2008 after his diagnosis of non operable CC and that was the only treatment that he had. I wrote quite a bit on the site about his experiences with it back then and here is a link to my first post on the site where I mention PDT.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940
If that link does not work then please just go to the search forum function at the top of the page. Then type in my name, “Gavin PDT” PDT is not my surname by the way!! But if you do that then it will bring up 11 pages I think of my posts. Jump to page 11 and you will see my early posts on my dads experiences with PDT.
If that does not work then please let me know and I will see if I can bring up some more links to my postings etc.
My dads treatment with PDT was a one shot treatment and I think things have changed with it now so that it is able to be done more than one time which I think you say your mum may get if needed?
Please keep on coming back and let us know how things go for your mum with everything. We are here for you and feel free to ask questions and we will do what we can to help in answering them, we don’t bite!
My best to you and your mum,
Gavin
My mom was diagnosed with hilar CC this past fall (October 2016). We sought treatment at University of Chicago; they have been wonderful. Since her cancer is inoperable but has not spread far, they approached her about PDT (photo dynamic light therapy) in November and she had it done via ERCP in December. She’s also doing Gem/Cis so they did the PDT on an off-week. Her Dr. told us she could continue to do it as necessary to keep the tumor under control and indicated it’s hard to see a real difference via the scans so the true success of PDT is that no growth/change occurs. Her Jan scan showed no change, which we were happy about but I’m curious if others here have had PDT and what results they’ve seen since we are most certainly new to this all.
It is wonderful to have this wonderful community to learn about all of the amazing new treatments being used and you moderators are so positive, kind and supportive. I feel lucky to have found this group to help keep my family and my spirits high and hope going strong. You all make such a difference!
Best,
Tracy
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