Topic: Photo Dynamic Therapy (PDT) Personal experience

I have been treated w/PDT 3x in the last year at the Mayo Clinic in Minnesota
If you are a canidate, it starts with an injection of photofrin, 2 large syringes.
This happens 3 days before the actual procedure so the tumor cells have
time to absorb & retain the photofrin.  Normal cells do not retain it and it passes through the body slowly being eliminated through the skin over the next 6-8 weeks. Light sensitivity is the side effect of the photofrin.  You have
to be covered up.  Sunlight, Daylight and incadescent lights are the biggest
problem with burning.  Especially the first 3 weeks. Just a few minutes can
mean skin burn, eyes too.  I have had some slight burns and have taken Benedryl to help with the itching and pain.  I have heard of some very bad
burns so I don't gamble at this.  The procedure is about and hour and they
burn off some of the tumor and place a temporary stent in the bile duct.
The stent is plastic and lasts 12 wks. max, 5 wks. min. at least for me.  I also
take 2 weeks to recover from the procedure. There is some pain which drugs always help and sometimes I need help sleeping too during recovery.
If anyone wants to know more, feel free to ask.  I thought I would just share my experience.   I was diagnosed 11/14/08 and am happy to share with anyone. 
Bill

Re: Photo Dynamic Therapy (PDT) Personal experience

Hello BW.....Welcome to our site.  Here you are signing up and already, you are informing us of your treatment.  That is very nice and I thank you much for sharing your experience with us.  How are you feeling presently and has the tumor reduced in size?  I am sure that many more questions will be coming your way and am very happy that you have found us.
Best wishes coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Photo Dynamic Therapy (PDT) Personal experience

Hi BW,

Welcome to the site, although I am sorry that you have to be here. Please keep coming back as you will get a load of support and help from us all. And feel free to ask any and all questions that you might have and I know that we have so many people here that will be able to help.

Thank you so much for sharing your experiences with PDT. My dad was diagnosed in summer 2008 and his treatment was PDT. His specialist who did the procedure was part of a group running a trial at the time in the UK and one of his specialties was treating and researching inot the use of PDT for CC.

My dads treatment was very similar to yours, 2 injections of Photofrin 3 days before the laser treatment, but he had the metal stent instead of the plastic one that you get. His PDT was also done just once and not the 3 times that you had. Here is a link to my dads experiences with the treatment -

http://www.cholangiocarcinoma.org/punbb … hp?id=1940

The point you make about sunlight, daylight, lighting and burning is so very important and as you are aware, it is so easy to burn, even when you think the light is not strong. My dad also had to get his glasses treated by his optician and the were blackened to the strongest level. He needed this level as conventional sunglsses were just not strong enough to protect his eyes.  So, yes as you say, do not gamble with this! To test his skin to the light a few weeks after treatment, my dad used to go out into the garden with one glove on and a paper bag over his hand. He would cut a small inch squared hole in the bag and hold his hand in the sky for 10 minutes. If his skin reddened the next day then he would stay fully covered for another week and then test again using the same method.

If you or indeed anyone else has any questions regarding my dads experiences with his treatment please jsut ask and I will help if I can.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Photo Dynamic Therapy (PDT) Personal experience

BW I am happy to hear this is working for you. Thanks for telling us your story. I wonder if my mother is a candidate?? Her oncologist never brought this up as an option.  I will bring this up on her next oncology visit.  Does anyone know what is required to be a candidate.  My mother is unoperable and in stage IV.  However the tumor has not yet spread to any other organs she just has 2 nodules in her lower abdominal cavity aside from the liver.

Janet

Re: Photo Dynamic Therapy (PDT) Personal experience

Hi Janet,

As to whether your mother could be a candidate for PDT, no one here will be able to tell you yes or no either way. I think that the best thing for you to do perhaps would be to speak with your mums doctors and see what they say about this type of treatment but I understand that it is not widely used. Then after doing this if your mum wanted to look further into it then you could look for centres that offer this type of treatment.

In my dads case it was his GI specialist that diagnosed his CC as being inoperable and it was also him that recommended and carried out his PDT. At this point, my dad had not seen an oncologist and an onc had no input at all into the decision to go for PDT. They decided to go for PDT due to the location of my dads tumour, around the portal vein.

Please keep us up to date and let us know how your mum gets on.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.