| | Joined: Jan 2011 Posts: 20 Member | OP  Member
Joined: Jan 2011 Posts: 20 | 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.
Husband has bucal mucosa tumor on right side, Stage 1, biopsied November 1, 2010 by oral surgeon/MD same day from hygienst appt. by dentist. Photodynamic Therapy clinical trial, 12/8/2010, follow up Jan. Feb. with a biopsy March, 2011. No chemo/radiation. Smoking stopped July 1974.
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | 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.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | 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
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | 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
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | 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.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | 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.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | 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.
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | | Joined: Jan 2011 Posts: 20 Member | | OP Member
Joined: Jan 2011 Posts: 20 | 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.
Husband has bucal mucosa tumor on right side, Stage 1, biopsied November 1, 2010 by oral surgeon/MD same day from hygienst appt. by dentist. Photodynamic Therapy clinical trial, 12/8/2010, follow up Jan. Feb. with a biopsy March, 2011. No chemo/radiation. Smoking stopped July 1974.
| | | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 |
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | | Joined: Jan 2011 Posts: 20 Member | | OP Member
Joined: Jan 2011 Posts: 20 | 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.
Husband has bucal mucosa tumor on right side, Stage 1, biopsied November 1, 2010 by oral surgeon/MD same day from hygienst appt. by dentist. Photodynamic Therapy clinical trial, 12/8/2010, follow up Jan. Feb. with a biopsy March, 2011. No chemo/radiation. Smoking stopped July 1974.
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