#88728 01-23-2009 01:35 PM | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Hello everyone, I'm new here. A fellow OC survivor told me about this site. I'm so glad you are here, I finally have someone to talk to! Thank you for being here. Carol
BTW I'll update my profile soon. I'm a survivor of stage 4 ssc of the right tonsil that had advanced to a lymph node. Like most of you, I went thru the treatment from hell and have lived to talk about it. I'm 3 1/2 years out of treatment. C.
Last edited by Buttercup; 01-23-2009 01:36 PM.
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | 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 | Welcome Carol. We look forward to you wisdom and experiences.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Welcome...I agree with David. I always like to hear from others who have been treated and are here to tell us about it.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | 3 1/2 years is great Carol, welcome.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Whoo Hoo indeed, from another tonsil cancer survivor! Welcome to the forum. It was one tough SOB wasn't it?!?! We're glad you're here.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Thank you for coming on board, and I hope you are doing well after 3 1/2 years. I look forward to hearing about how you have handled eating issues, dry mouth, etc. Any pearls of wisdom from an old hand. I'm 10 months out and still struggling with these issues.
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: Jan 2009 Posts: 11 Member | | Member
Joined: Jan 2009 Posts: 11 | 3 1/2 years! Great! Time to start planning the big 5 year party!
Welcome and best wishes.
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
| | | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Hi everyone and thank you for the wonderful welcomes.
Gary A, Yes, it was an SOB. I'm not exactly sure that if it weren't for the love and responsibility I felt for my family, I might have quit treatment. I've read and heard Head and Neck cancer treatments are the worse and alot of folks will quit about halfway through them. We here on this sight are definetely warriors for sure.
David R, I have the oddest eating habits now. Things I used to love, I no longer care for. I probably had my PEG removed too soon as I couldn't stand the thought of anymore "hardware". I have different stages where I find something I like and will eat it all the time. Anything with any black pepper or tang, like ketchup, I can't yet handle because of the burn. I ate alot of ice cream, in fact so much that I ate my way into a Curves membership. LOL Recently I gave ice cream up and am trying really hard to eat better. With the dry mouth, which I still have although it slowly gets better, I use Oral Balance by Biotene. It has been a life saver. My dentist gave me samples of it and I use it more than water. Strange as it weems, if water isn't ice cold, it just seems to create more dry mouth with me.
Thanks again all and I'll see you all around the board, Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | 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 | Carol
Welcome to OCF. Nice to have another survivor joining us. Hope you find lots of support with any questions about lingering after effects. Unfortunately there are many little things that tend to hang around long after tx finishes.
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  | | |
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