Hello, I am new to this forum and am hoping to learn about a newly diagnosed, November 3, 2010 cancer of the cheek and photodynamic protocol which was done on December 8, 2010. Thanks for being here, we need the support so much.
You've come to the best place around for information and support. The posters here are generous with their knowledge, so bring on any questions you may have.
If you haven't already done so, type
photodynamic in the search box in the upper right of each message-board page and hit the Go button. You'll get three pages of results, including two
substantial threads. A followup to the first thread is
here.
These threads were started by people who have had PDT. Click on their names to get their profiles -- you could send them an e-mail or a private message for additional details.
More links about PDT are available
here and
here.
There is a separate search function for the main part of the OCF site. Click the gold "search" link at the bottom of each message-board page to get to that search engine.
Darbi,
I never heard of photodynamic I did look it up on WebMD it's laser therapy something new, what I read.
Seeing you're from Buffalo, NY did you go to Roswell Cancer Center, I'm originally from Lockport, NY?
In the signature line of your profile tell us more, diagnosed, treatment, where etc...it can all be found on his medical records. If you don't have them I would request them.
You'll get a lot of information on the forum, people are here to help and very knowledgeable.
Keep us posted.
Connie
Leslie...excellent!!! I never thought of doing a search here. Looks like this was talked about before I never heard of it, must have missed it along the way.
Connie
Hi Darbi, welcome to OCF. The first time I had oral cancer was 2007, the spot was located on the inside of my left cheek. I had a second, seperate spot up behind my top left molar. Im not familiar with the treatment you are having. Please tell us more about it.
Welcome to OCF! I have never heard of photdynamic therapy. I would love to hear more about that. I was diagnosed in May of 09. I can hardly believe it has been a litt over 18 months since all this began. You have come to the right place for support. Coorect me if I am wrong, your husband is the one who has oral cancer, right? Do you know the stage, location? If you look at the bottom of our posts we have placed information about our cacner and treatments there. You can go to your profile page and go down and fine where you place that info. Please keep us update.
From my research, photodynamic therapy is when a photosensitive chemical is applied topically to dysplasia in the mouth (I think it can also be given intraveneously but I'm not sure how it is targeted to the tissue). A laser, tuned to the frequency of the chemical, is then aimed at the tissue. Only the coated tissue is distroyed and healthy epithelial cells return to the site. Apparently there is a low rate of dysplasia recurring.
Most of the trials are out of the US but there is an ongoing study at Northwestern in Chicago- however you have to be cancer free for two years to participate. I would be very interested to hear that someone else is performing this treatment.
Thank you all for the welcome and I appreciate the Photodynamic Therapy procedure was explained by Cbhh. A light sensative dye is infused by IV the day before the procedure. The actual procedure is done with a light which is directed on the lesion. They also checked the lymph nodes by a dye injection before the procedure.
It is limited to Stage 1 tumors because of the depth the light will reach in the tissue. You are to stay out of sunlight for at least a week.
We will see the doctor in January.
I wasen't sure where to post after the Introduction, Under Treatment and posted a rather long message.
Have been reading alot so many things, I didn't know why losing weight happens even if you are eating fairly well.
I assumed that it was that food didn't appeal or the treatment made you ill to eat.
From what I have read, it is the tumor itself is taking the nutrients to grow as it is part of your DNA, meaning it is part of your body. That is why you lose weight. Am I wrong in this?
Sometimes I wonder if reading is a good thing or something that just scares you to death. I go back and forth on this, is it better to Know or just to have hope and not know? How do others feel about this? I am going to try to move this message to another area in the forum as I think it is not an introduction matter. Thanks all, Darbi,
Tom's wife/caregiver, Photodynamic treatment of the buccol mucosa right side, December 8, 2010, Roswell Cancer Institute.
Thank you for the search information, Leslie, I have looked at the threads and pages and they are very helpful. This is a new procedure and not alot of long term data on it as yet. thank you so much for your help as it is very informative, we are both very scared and trying not to be. Darbi
In my non medical opinion our weight loss is multifaceted resulting from perhaps a combination of the effects of chemo, radiation and the mental aspect of cancer. Both the radiation and chemo damage cells and the radiation damages both healthy as well as cancerous ones so in this regard our body is expending energy to repair itself. I assume it's also expending energy to fight the cancer in the first place. I also believe that we expend an amount of energy dealing with all the mental issues that cancer brings. The physical damage speaks for itself but that doesn't explain why PEG users sometimes loose as much weight as non PEG users. I have heard that the radiation changes our metabolism so hopefully Gary can address that as I can't understand how radiation could do that but I do still find it easier to maintain my weight now compared to pre TX.
A very non scientific but intuitive reason for the weight loss may be in major dietary changes. Studies show survey respondents usually gloss over excessive drinking (they're all "social") or gluttony (just some "snacks"). I can't recall a single fellow radiation patient in the waiting room talking about eating candy bars, or potato chips, or cookies or any sugary snack. Nor did they guzzle sodas and with the exception of myself, they gave up alcohol. Major calories not usually counted by people. Just speculation on a Sunday morning.
Of course I had given up all sugar years ago, and lost weight during TX, but expected it since I did not want or have a PEG.
But I used to eat a bag of potato chips at one setting and after IMRT had no desire to do so ever again.
Charm
Thanks to David and Charm, and I am going to be posting in the thread "In Treatment" instead of the Introduction thread, as I did here - I'll be posting an answer there to you both - Darbi