| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | 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?
Last edited by suzanne98; 02-11-2011 06:46 PM.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2011 Posts: 25 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 25 | 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!
Age 35
Superficial SCC lateral tongue
HPV(-), nonsmoker
Right lateral tongue resection 1/17/11 w/ Alloderm Graft
Proud mother of 2
Enjoy walking/aerobic kickboxing
Pittsburgh Steelers Fan! (#86)
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | 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
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | 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
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | 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
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | 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!!
Last edited by cbhh; 02-12-2011 07:40 AM.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | 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:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | 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
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | 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!
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | 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
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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