| | Joined: Jan 2014 Posts: 1 Member | | Member
Joined: Jan 2014 Posts: 1 | Hi, I'm a student from Katherine Stinson Middle school in San Antonio, Texas. We are doing a cancer unit for the Gifted and Talented program, which are a program to make people to be more aware of cancer and what the risks are. So right now I'm searching for a cancer survivor that won't mind me interviewing them, and telling me from their experience what you should do after getting the tongue cancer. If you are a tongue cancer survivor and doesn't mind me interviewing, then give me a reply and we'll arrange a time where and when we can meet. Thank you.
Last edited by OCSupporter; 01-10-2014 08:12 PM.
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | I don't think you are going to have much luck finding someone who lives near you to be interviewed.
Might I suggest a different approach ... go to the websites home page and start reading the wealth of information available about oral cancer. There is plenty of information there for you to do a very informative school project.
Even if you did find a person to interview, I don't think any of them know as much as you can learn from the home page information.
Good luck
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | You might have to do an online interview or a skype interview I think some people here would be willing to help. 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | I have a good friend in San Antonio who probably would help you. Please send me your contact info (thru a private message) and I will pass it along to her. I will make it easy and send you one first.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hey OCSupporter I would like to invite you to come out to OP Schnabel on Saturday, April 12 for an Oral Cancer Foundation awareness walk. Bring your whole class. Better yet, form a team and have all of your class help raise money for research! That would sure help you see a few survivors, learn a lot more and even get a free oral cancer screening.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2009 Posts: 3 Member | | Member
Joined: Jun 2009 Posts: 3 | Hi OCSupporter,
I would be happy to help with your project. I live in Mississippi so the interview would have to be via phone/Skype. You can PM me if that helps your project.
Way to go on building awareness for OC!
CA
Age 23 at Dx - Oral Tongue SCC, Stage IV, T3N2bM0, HVP-negative
Non-smoker, occasional beer, exercise daily
Treated at MD Anderson (consults at Johns Hopkins and Sloan Kettering)
3/2009, 6 rounds paclitaxel, carboplatin, cetuximab
5/2009, Partial glossectomy and left-neck dissection (39 nodes removed)
6/2009, IMRT 60 Gy in 30 fractions, PEG
10/2010, Spontaneous Pneumonmediastinum
Now, Still doing great with minor long term side effects (low WBC, neuropathy, arthritis in jaw)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Feel free to contact me. Every year I speak to High School students about my cancer caused by HPV and the way to prevent it by the Gardasil vaccination. I've done this for 5 years and each year teachers line up for me to talk to their students. This past year instead of going to individual classes I spoke to an auditorium full of students.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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