Hi all,

I had my 3 month appointment today and my doctor saw a spot towards the front of my tongue near the bottom that can no longer just be watched and will require yet another partial glossectomy (this will be my 5th) nothing is scheduled yet because she told me about a study being done at Penn that she wants me to look into.

So...the study is on PDT (photodynamic therapy) from what I understand there is a drug injected into the bloodstream and a couple days later the area is exposed to light. The cancer cells hold the drug while the good cells do not so when exposed to light the cancer cells die. My doctor told me this has been used on other types of cancers and has favorable results.

Has anobody heard of this or know anything about it?

Hi Suzanne,

I'm so sorry about your appointment. I am thinking of you. I know about PDT pertaining to ophthalmology, and suspect it would be similar in your (oral) case, but wouldn't want to give you any wrong information. I can only imagine the stress you must be feeling. I'm sorry!

Oh Suzanne, my thoughts are with you my beautiful friend. I haven't heard of PDT but I hope it's promising. Please keep us posted on how things go xx

Suzanne, just wanted to let you know I am thinking of you. I have not heard of PDT either but if it holds any promise for cancer patients, then I am all for it! Good luck with it all xx

Susanne

Here is a link to a thread last month about PDT
PDT ocf post The second post in this thread by LeslieB has even more links .
Typing in PDT in the search box does not work, you have to type in - using the quotation marks - "photodynamic therapy" to pull up all the threads running back to 2007
Sounds interesting
Charm

I have heard of PDT and know of a test currently ongoing at Northwestern in Chicago. I believe the early results are very promising. From what I understand in oral cancer the medication can also be applied topically and then the area is exposed to a laser which only attacks the cells that have absorbed the drug. Healthy epithelial cells then replace the cancerous ones.

I was unable to participate in the Northwestern study because you had to be cancer free for two years. I hope that you will be able to participate in the Penn study and I wish you the best of luck!!

Thank you all. I just wrapped my head around the fact that I'm going back to work on the 16th and will be leaving my son for the first time. I finally started to feel ok about it and then this happened. Now everything is up in the air again. Cancer is so much harder as a mother.

I have an appointment with the doctor at Penn who is doing the study this Tuesday, the 15th at 8:45am. We'll see what happens:)

Charm and Catherine...I must have been posting when you were too because I just saw what you posted. Thank you both...Charm, I will check out that link. Thank you:)

Suzanne, I am so sorry you have to go thru anything more. Im also sorry you are going back to work already. Never enough time home with the children! Glad Charm posted the link, I knew there was a recent post about it. Sorry I didnt see your post earlier. I wish you the very best of luck this week with everything!

I am also so sorry that you are again looking at another partial glossectomy. I have so enjoyed seeing how your life was going so well.
Hope that the PDT is something that proves to also be favourable in OC.
Have they done a biopsy of the �spot� ?
I am having one done next month on what may or may not just be scar tissue.
Love
Gabriele

Suzanne, This just not fair! I am so sorry you are going through this again. Yes, there is never enough time kids when you have to work. You an I both have had 4 partial glossectomies. I can not believe you are looking at a fifth. I will keep you in my prayers.

Well, I'm staying positive..and one of the reasons I can is because of you all here. I'll be interested to hear what the doctor says on Tuesday. According to my doctor, I am just the kind of patient the doctor wants for her study. So, hopefully she agrees and we can start it and take it from there.

As far as my return to work...before I found out I may need surgery again Ray and I had a good talk. I finally felt as comfortable as possible and when I got the news I felt like that changed everything. But...it doesn't have to. I can still go to work like I planned, I'm not going to let this turn of events change anything.

Thank you all...

Love,
Suzanne

Suzanne --

Actually, I am having PDT next Wednesday for aktinic keratoses on my head, neck and chest. I have had a variety of skin cancers (basal and squamous cell) over the years, and numerous AKs treated with cryotherapy. The wages of sin for 20+ years as a competetive swimmer in California in the days when it was all about Coppertone and SPF wasn't even a known term.

It apparently can do a nice job of handling pre-cancerous lesions, even before they become visible, at least in skin conditions. Hope things turn out well for you!

Interesting Jeff...thank you for sharing. Have you had PDT before? I Googled Cryotherapy and it seems a little bit different. How interesting that there are different options out there...I just wonder why my doc didn't tell me about it before. I know there is no promise that it will work but it seems there is a chance.

Good luck on Wednesday.

Suzanne sorry to hear about your news - I agree do not let this mess with your plans - PDT rounds very promising!!! good luck! Sending good healing vibes your way!!!!