| | Joined: Aug 2012 Posts: 8 Member | OP  Member
Joined: Aug 2012 Posts: 8 | Hi, I am a tongue cancer survivor and I am glad to have found The Oral Cancer Foundation. I am glad to have found a place for those dealing with oral cancer. There is so much attention to other cancers and not many for those who suffer with oral cancer. I am a volunteer and committee member for the ACS Relay For Life. When I am feeling well, volunteering and helping others with cancer gives my life purpose. Thank you for having me.
Paula
SCC
Stage 2
DX 07/12
Partial Glossectomy (Rt half 07/09 and 01/10) Radical
PEG: Many/last one almost fatal
RX: MS Contin, Percocet, Klonapin, Omeprazole, Wellbutrin, HCTZ, Ambien, Zofran Injections
QOL: Difficult but optomistic
Xerostomia
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Hi Paula, glad you're here. There are a lot of people who come here for advice and it's always good to have another voice of experience. Iknow that oral cancer gets completely overlooked at our local RFL. As a volunteer perhaps you could get Brian Hill to send you some hand outs.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | 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 | Paula,
Welcome and as I told Laura, Gina will be in touch as soon as she can.
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.
| | | | | 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 | Paula, welcome to OCF! Its always nice to have another survivor join our forum.
The Oral Cancer Foundation is a very small nonprofit organization which depends on its volunteers and donations to stay running. They invest in things to help oral cancer patients thru studies, research, clinical trials along with running this website. There are also brochures printed that can be given to dental professionals. I always carry some with me to make sure all my doctors have them on hand. If you would like some brochures, call the OCF office at 949 646-8000. They are open PST 9:30-5 M-F
Last edited by ChristineB; 08-01-2012 04:04 PM.
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: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 |
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | | Joined: Aug 2012 Posts: 8 Member | | OP Member
Joined: Aug 2012 Posts: 8 | I feel I did not give enough info after reading your posts. I am a newbie, so I will do my best.
Diagnosed July 2009 at 43. Had Partial glosectomy. Six month later after PET scan another partial glosectomy January 2010 resulting in half my tongue removed. Numbness and no feeling on right side of tongue and mouth. Constant pain that does not let up and makes eating difficult. Many nasal and feeding tubes resulting in large weigh loss and constant battle to keep weight on. All the surgeries and meds caused the damage of the nerve the controls your stomach to contract resulting in severe gastropharisis and allergic to the only meds that help. Suffer from debilitating nausea and inject Zofran at least 4 times daily to be able to function. My last PEG got dislodged and nicked a blood vessel and my entire abdomen filled with blood and almost died. Spent 6 days in the hospital in September 2011. Currently my voice left 10 days ago and back at the Oncologist. Had a scope and biopsy and another PET on this coming Monday. Try to do all I can to educate others and volunteer when I am well enough. I try hard not to give in to the chronic illness and be as productive as I can. I work with new cancer patients and try to help them and give them through the initial diagnosis process. That is my story. Paula Foster
Paula
SCC
Stage 2
DX 07/12
Partial Glossectomy (Rt half 07/09 and 01/10) Radical
PEG: Many/last one almost fatal
RX: MS Contin, Percocet, Klonapin, Omeprazole, Wellbutrin, HCTZ, Ambien, Zofran Injections
QOL: Difficult but optomistic
Xerostomia
| | | | | 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 | Paula thanks for adding some more info about your journey. Im right there with you with still using zofran. I have alot of nausea and end up spending a couple days a month on the couch or worse being woken up in the night sick as a dog. Its horrible so I sure feel for you having to be on zofran every day.
Please add a signature when you can to help us to get to know you easier. Click on the "My Stuff" tab, on the drop down menu, click on "edit Profile". Then scroll to the bottom and type your info in the white box and "submit". It can be updated at any time.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Paula,
Thanks for sharing your story. I'm so sorry it has been such a battle. I am amazed at your positive attitude toward life and helping others. It is people like you that keep people going, even when you are feeling ill yourself. Thank you for that!
Welcome to OCF. We battle together!!
Blessings,
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Welcome Paula! You're an inspiration!
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: Aug 2012 Posts: 8 Member | | OP Member
Joined: Aug 2012 Posts: 8 | David, I totally agree that Oral Cancer is overlooked at the RFL and that really bothers me. This is one of the reasons I am so glad that I found this organization. There was no one else I knew who was dealing with oral cancer. I would gladly pass out any hand outs that would educate.
Paula
SCC
Stage 2
DX 07/12
Partial Glossectomy (Rt half 07/09 and 01/10) Radical
PEG: Many/last one almost fatal
RX: MS Contin, Percocet, Klonapin, Omeprazole, Wellbutrin, HCTZ, Ambien, Zofran Injections
QOL: Difficult but optomistic
Xerostomia
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