| | Joined: Oct 2010 Posts: 5 Member | OP  Member
Joined: Oct 2010 Posts: 5 | Hello!
I have recently learned of The OCF and this forum and feel like I have discovered a family that I didn't know I had. I am 17 and a half years out from my treatment for two bouts of oral cancer.
I am alive and well and telling my story of survival to groups around the country. Certainly, there are still issues to deal with from the cancer. But I survived to become a grandmother and am very grateful for the bonus life I have.
Looking forward to chatting with you all. I am happy to offer any support I can from this vantage point!
Take great care,
Terri | | | | | 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 | Welcome to OCF Terri,
It always does our hearts good to hear from long term survivors.
17 years is wonderful (congratulations) and gives comfort and hope to those who are going through treatment now. Also encouraging for those of us worried about a recurrence. I am sure many here would love to hear your story and a good start would be to put a brief description in your signature.
Go to My Stuff, Profile and when you scroll down to the bottom you will see signature. What you add there it will come up with every post.
I am looking forward to hearing more from you.
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
| | | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Wow!! Welcome Teri! Seeing a 17 year survivor is so uplifting. Where was your cancer located?
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Teri! It's so uplifting hearing that your a long term survivor. Can't wait to get to know you better!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Me too, Teri. I will be looking for more information from you as to the type oc you had and your treatment(s). WOW - 17 years! That's wonderful and so encouraging, which is what we all need. Thank you for joining us.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Wecome aboard Terri. Your type of OC history is a great for us to read. I hope you post your history as to where you had OC and what the Drs did to cure you so long ago.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 |
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Welcome Terri,
Good to hear from another long term survivor. As Gabe suggested, please update your signature so all will know where your cancer was and what type of treatment you received.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Terri and welcome, wow, 17 years, that is wonderful! And it is also very hopeful, I have had 3 bouts of it myself. Again, thanks so much for joining us! Take Care, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | 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 | Welcome to OCF Terri. So nice to have another long term survivor on board Im sure you will be able to help many with your experiences. We all would love to hear your story. Hope you take the time to add your signature.
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 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Whats up Terri!! Survivor stories are always awesome, I try and pay more attention to those stories rather than the opposite.
Your Friend,
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | I was building up to a "what if it comes back" moment today, and then I read your post. 17 years! I'll keep that thought.
Welcome!
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Hey Teri,
I found this site shortly after my diagnosis. I had already found all the sites that had the ugly info on them; I was looking for survivors and their stories. I wanted to know I at least had a future to look forward to.
I've been coming here ever since.
My ONE YEAR ANIVERSARY FOR COMPLETION OF TREATMENT WAS YESTERDAY!
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Jun 2010 Posts: 2 Member | | Member
Joined: Jun 2010 Posts: 2 | My mom is a 5 year survivor but lives a much different life. Once a non stop powerhouse now she rarely leaves her home. She is addicted to oxycotin and refuses to see this as an issue . She refuses to eat and uses only a feeding tube. Had radiation and chemo. Her family loves her but she will not live near us. It breaks my heart that surviving for her is just that not enjoying life. I know that she has been to hell and many times is still there. Is there any way to reach her and improve quality of life.
Grieving Daughter | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Sometimes making a change from something familiar where you have gotten used to knowing what to expect can be very difficult even if the change would be a better one and would improve well being. Have you talked to her doctor re the oxycotin? Maybe he would have an idea or could talk to her about getting off the oxycotin. My son always reacted better to suggestions when they came from someone other than me. Printing out and showing your Mom what others have said about the benefits of exercising the mouth with "real" food and not only relying on the feeding tube might help. I sure hope that things improve with your Mom so that you can feel better too!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Oct 2010 Posts: 5 Member | | OP Member
Joined: Oct 2010 Posts: 5 | Congratulations Kelly! That is fantastic--I hope you are having a grand celebration!
Terri | | | | | Joined: Oct 2010 Posts: 5 Member | | OP Member
Joined: Oct 2010 Posts: 5 | Dear Daughter,
I am really sorry to hear about your mom. Will she listen to your concerns? Hard to know the impact of the addiction. You might get help from people or groups that deal with addiction--just a thought.
There is a way for us to communicate privately by email and I'd be willing to do that is you want to.
Be well,
terri | | | | | Joined: Oct 2010 Posts: 5 Member | | OP Member
Joined: Oct 2010 Posts: 5 | Thanks Marlene. Believe me, I had plenty 'what is it comes back' moments and I'm here. Glad that helped!
take care, Terri
| | | | | Joined: Oct 2010 Posts: 5 Member | | OP Member
Joined: Oct 2010 Posts: 5 | I agree about survivor stories. My saga is pretty dramatic and I'm here to tell it, so super grateful.
take care,
Terri | | | | | 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 | Hi Terri,
I think we are all interested to learn a little about the details of your experience with OC.
Things like type of OC, treatment and any issues etc.
also if you could add a signature that would be great (see my previous post).
Cheers
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
| | | | | Joined: Jun 2010 Posts: 2 Member | | Member
Joined: Jun 2010 Posts: 2 | going to see mom this wekend will share what i have learned here | | |
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