July 29, 2015 at 6:50 pm #89022
I am so happy that the info about the PIPAC might be of use to you.
I have just found a rather recent article iwritten in English about the procedure.
It is with the inventor of the PIPAC and I find it incredibly fascinating. What a man!July 29, 2015 at 1:13 pm #89021sherriMember
Sorry to hear about your Dad but it sounds like you have a good handle on his health treatments.
I wanted to thank you for the article on PIPAC. I was very interested in the chemo going directly to the cavity and Abdonmen since that is where my cc has spread and I’m on my third different chemo combo and nothing seems to work. I translated the article in English ( will email to anyone that wants to read it) and took it to my onc yesterday. He was very interested in it. He says he doesn’t know of anyone in the USA that has done this. However Wake Forest university is testing something called a Hypac for advanced ovarian cancer and is showing success. I’m am going to back to Anderson Cancer Center in September and will be asking my doctor there about both of these treatments. I will volunteer to be the first CC patient to be tested.
Again thanks for the new information
SherriJuly 23, 2015 at 8:38 pm #89020
THis from 2013 Katia may be of interest to you –
Current Status of Photodynamic Therapy for Bile Duct Cancer.
Glad to hear that you have talked with the professor in Bochum and that they have dealt with patients with CC. I know that when my dad had PDT in 08 it was a one time treatment, one zap as it were with the laser but as I understand it now patients can get more than one treatment with the laser and it sounds like things may have moved on with PDT from where they were back in 08.
GavinJuly 23, 2015 at 12:39 am #89019marionsModerator
Katia….this link offers explanations to PDT: Note: it kills cells nearby, hence is appears to be a localized treatment.
You are correct, this treatment is not used often in the US. Perhaps the efficacy still has not been determined for our cancer; clinical trials are under way, but we don’t yet know the outcome of such. Why it is used predominantly in Europe…I don’t have the answer.
MarionJuly 22, 2015 at 10:29 pm #89018
Actually Talked to one of the professors in Bochum regarding PIPAC and peritoneal mets for cholangiocarcinoma. They have already dealt with cc patients, so it is indeed an option and the pipac was actually developped to deal with peritoneal mets.
My question still stands about photodynamic therapy and mets. I was wondering if those were compatible. I am not sure.
Thank you!July 22, 2015 at 8:41 pm #89017
I am not sure to the answer to your questions re PIPAC and mets so would not like to take a stab at that one. Hopefully someone else will be able to help with that and I am not too sure really what PIPAC involves etc.
How is your dad feeling today?
GavinJuly 22, 2015 at 10:55 am #89016
Thank you very very much!!
You are all so kind, I am overwhelmed.
One thing that is bothering me now:
Maybe I did not understand well, but it looks like PDT is not advised for people with mets.
Though some of the studies I have looked at showed people with mets who had it.
Maybe after the results, they realised it was not a good idea?
I wonder, if the mets go away with the PIPAC, is it considered that you still have mets???
And Gavin, did your dad have mets when he was treated?
Thanks again!July 21, 2015 at 6:02 pm #89015
And forgot to say as well, that is great treatment that your dad is getting there and I hope he recovers well and quickly from his surgery too!July 21, 2015 at 6:01 pm #89014
PDT is not used a lot but my dad had it as his treatment when he was diagnosed back in 2008. I wrote quite a lot about his treatment and experiences with it here on the site at the time and if you want to you can search for my first posting. I would post a link to them but for some reasons links to previous postings do not seem to work here.
But, to save you time searching through all my pages of posts just go to user search, Gavin, click on all posts link and that brings up all of my posts. Then click on page 333 which is the first page of my posts and that brings up my first posts. There are posts about PDT on that page and pages 332 and 331 as well I think.
Hope that some of the info in there will be of use to you and if you have any questions about my dads experiences etc just ask and I will do my best to answer them.
And no, your question is not a dumb one. No question ever is dumb! But the reason that you can not find much experiences of people talking about PDT for CC is that it is not widely used for it.
Hope that helps.
My best to you and your dad,
GavinJuly 21, 2015 at 2:50 pm #89013lainySpectator
Katia, it is so good to read that your Dad is such a GOOD RESPONDER! He has a ton of fight and spunk in his, Bless him! Also glad to read about the Hospital as I am sure that will help others in the surrounding areas. Praying for the treatment to work and of course for your Family!July 21, 2015 at 1:49 pm #11517
So I have just finished watching the recent webinar about Photodynamic Therapy. I find it extremely exciting.
And my question after watching this is how comes that I don’t read more about people using it on the forum or on CC fb groups? I read a lot more about chemotherapy, but not PDT. Is it not really widely prescribed? If not, why?
Maybe this is a dumb question, but it is one that is really bothering me .
( ha, let me mention that last week, dad experienced his first ascending cholangitis episode. A tumor had started growing in his liver, at the bifurcation of the bile duct. A surgical team was scrambled up in emergency to operate on him atthe week-end at the U.Z Leuven. That saved my dad’s life. What an amazing hospital!)
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