#95623 05-17-2009 04:26 AM | Joined: May 2009 Posts: 12 Member | OP  Member
Joined: May 2009 Posts: 12 | Greetings fellow oral cancer survivors! It's so nice to find you. I just finished radiation and chemo a week ago friday for a stage 2 tumor on the base of my tongue. I am now going through "recovery" phase. Frustrated at how long it is taking to see any improvement, I went googling and found this forum. Hallelujah! I am already reassured by reading others' accounts of their experiences. Thanks!! You can see ongoing details of my adventure at this blog I created: http://squamouscell.blogspot.com/2009/03/start-here.html. david
Stage 2 SCC right base of tongue. 7 weeks radiation & chemo with erbitux. Peg tube. Concluded radiation treatments 5.7.09. Two recurrences, two surgeries. Most recent, a substantial glossectomy, 3/25/11. PEG tube. Minimal swallowing ability, but working on it.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Welcome, you will find a lot of support on here as I have. I too am just going through recovery, but have not began the chemo and rad stage yet. I go back for my next appt. this Wednesday to discuss what the next step is. Sorry that you had to join this club, but these people are wonderful in here.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | 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, I read your site but I'm wondering if anyone mentioned HPV to you?
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Welcome David1, we are happy you found us, but happier that you are done with treatment and can now adjust to your new normal. Keep us updated and stay with us - we appreciate folks with the gift of the writing (or as it's known today, the gift of BLOG). You won't find a more understanding and helpful group than the nice folks here in OCF!
Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | 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 | Welcome to OCF David. Its comforting when you find there are many others out there like you who have been thru OC treatments. You will find lots of help with your questions and Im sure you can be a help to others who are just starting out. Very soon you will start feeling like your old self. It usually takes a few weeks after treatments end to feel better. When you have time, please add a signature so we can get to know you better.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Welcome to our home David and say what ever comes to mind. We all like fresh comments and maybe a few ideas. THe ones that tested positive for HPV have the best chance to beat this stuff and the ones that tested negative have a bad shot of reoccurence. Brian posted that yesterday or the day before from a meeting he attended.
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: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Your blog is incredible, David!
Good luck with your healing and for a better future without OC.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | David1 welcome to OCF. I quickly browsed your blog and loved the "Teletubby" bandage pix. The Erbitux and radiation did a similar number on my neck and throat, and I also had to use burn victim techniques to get through it. Changing the bandages twice a day (all had to come off for radiation) was so painful and tedious with the skin coming off. I will peruse your blog later more fully as it brings back memories. Funny how some of us do not discover this OCF forum until we are in recovery phase. congratulations on uncovering your cancer at an early stage, it really improves your odds of total remission. You may be surprised about your beard coming back as they told me emphatically that it was gone especially with the damage so deep but I need to shave every day. One piece of advice: seriously adjust your time lines: one week after chemo and radiation is NOT a long time for improvement. In fact the worse part of radiation still awaits you. As they say here: Radiation is the gift that keeps on giving for the rest of your life. Great attitude and spirit. Hope you grace our forum with your style and wit that shines through your blog. Please mention OCF in your blog so others can find us. charm
Last edited by Charm2017; 05-18-2009 05:46 AM. Reason: TYPO
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: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Hi David,
Welcome. Just read your blog, you seem to be coping really well. Hope your recovery is smooth.
Cecilia
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Congrats on finishing your treatments. Sounds like you know it's going to be a slow process for the body to heal from all that's been thrown at it. Time will march by though. Good luck.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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