Hello to all. It has been determined that I am a candidate for photodynamic therapy at a CCC in upstate New York. The procedure was developed there (Roswell Park) and is currently in the trail stages for oral conditions, so I am not sure if it is offered anywhere else (I would be happy to find out if anybody is interested). It was suggested to me that I post about the procedure on the board with hopes of helping somebody else in the same boat as I. It is very successful in treating dysplasias (pre-cancerous lesions) and Ca in situ. I am not sure if anybody has ever posted on the subject before and have no idea how much information there is available on the procedure, but I have plenty. If anybody would like information about this procedure, please, feel free to send me a message and I will send you all that I have. I'd be happy to post on the board somewhere as well, I am just not sure if it would be appropriate/redundant etc. Thanks and best wishes to all!!!

Rick

Rick, I and others will be very anxious to hear your results. I first read about this being worked on in Seattle, WA, I believe at Fred Hutchinson, last fall. From what I read, I was pretty excited about this, as if it is as effective as hoped, it will be one whale of a lot easier than rad and chemo. Please keep us posted.

Hi Joanna, it is currently an accepted procedure for esophogeal (and I believe lung) tumors/dysplasia. The WONDERDERFUL news is that it "destroys" most pre-cancerous conditions as well as cancer cells. I am not sure whether or not it would be used as an alternative to rad/chemo, but it certainly seems like a possibility. I am still in diapers when it comes to researching these procedures, so I don't want to speculate much more without the information in hand. I have decided to go through with the procedure as a part of their (Roswell) clinical trial, for it is still in that stage for oral conditions. I will not be undergoing until the fall, for you must remain out of direct sunlight (or remain COMPLETELY covered) for up to 8 weeks due to the drugs photosensitivity. I will definately keep you all posted, and again, if anybody wants specifics, please feel free to message me! Thanks, and best wishes to all!!!

rickt,

How did it go at Roswell. I recently saw them about a new primary on my tongue, (, 1 mm deap). What area did you have illunnated and how did it heal. Did you get PHOTOFRIN or HPPH?

Thanks,

Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09.

Hey Mike,

Roswell was great! I received Photofrin. The procedure was a simple, in and out the same day, and was over 3 years ago now with no signs of recurrence. The first day, there was tremendous swelling, but no pain. The following three+ weeks were EXTREMELY painful, but the pain management at Roswell was fantastic....they were very accomodating & understanding of this. The photosensitivity was a bit much to tolerate, but well worth it. I had a family trip to Florida planned almost exactly four weeks after the treatment, and, against their advice, I "took one for the team" and ended up with sun poisoning on both of my hands (despite my best efforts to keep all my body parts from being exposed to sunlight). I have my six month follow up with them next week and always look forward to my visits. They have a terrific team there and I feel like I am in good hands. Please feel free to contact me if you have any other questions or if there is anything that I can do to help. Best wishes to you and I hope your treatment goes well!!!!

God Bless!
Rick

Rick,

Thank you for letting me know how things went for you at Roswell. I am talking to Dr. Rigual, ENT surgeon and Michele Cooper the PDT nurse. Is that who you saw?

About the pain � didn�t the hydrocodone and lidocaine swish handle it? Does that stuff only dull it?What part of your mouth did you have treated?

Have you chatted with anybody else who had PDT to the oral cavity? If you want to correspond directly, my email is [email protected].

Thanks,

Mike

age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09.