| | Joined: Feb 2011 Posts: 82 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Feb 2011 Posts: 82 | i know the feeling hehe. i do have facebook. i am already a part of the ocf fb list. i am dave tyssen, if you want to add me  . 'dave' rather than david to be sure you get the right person. i think i'm the only one on there.
21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
| | | | | Joined: Feb 2011 Posts: 82 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Feb 2011 Posts: 82 | hey, I thought I'd check back in here since i haven't been on for a while. i've been reading here often though. I recieved some good news on Thursday. my first PET scan (post treatment) came back clear. so that was great news! I'm fit and healthy at the moment and my appetite has been huge since i've returned to outdoor work fulltime and gym 4-5 times a week. Sour cream is my new favourite food. you can add it to almost anything, and it's delicious. it's certainly changed the way i taste & enjoy food again which is great. I'm hoping to re-start a university course i'd begun just before my diagnosis last July. Studying to become a Primary school teacher. my speech has been near perfect. i sound very much the same as before my surgery, which certainly wasn't expected. and my neck scar, thigh scar, & 'jaw split' scars are all healing nicely. so things are getting back to a 'new normal' which is good. I have a lot of people to thank for that. something i've wanted to do since i was sick, was to get a tattoo that tells a story about my experience. i'm not sure where to start though. I'm a terrible artist. my drawings now, are actually worse than when i was 4-5 years old i think  but i'll think of something, or get some help to design it. thanks for the support i've been given here so far. i've really appreciated it. i've learnt alot in my short time here and it's certainly put my mind at ease on different aspects of my experience. I can't thanks you guys enough cheers! dave
21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
| | | | | 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 | Congrats Dave. Sounds better than terrific!
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 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 | That's awesome I am so happy for you!
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 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Congratulations on the clear PET scan Dave.
You are doing so well and have such a positive attitude.
So good to see you looking forward and wanting to continue your education.
I am not a fan of tattoos but I did see one of our OC family post a picture of one she had done on FB using the maroon colour that you will see on the OCF store here in the wrist bands.
I�m sure I downloaded the picture and will have a look for it.
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: Nov 2010 Posts: 167 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | Congrats Dave - so wonderful to hear your recovery has been so speedy and you're enjoying life - along with sour cream!!
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | Joined: May 2011 Posts: 13 Member | | Member
Joined: May 2011 Posts: 13 | Welcome Dave, I myself just joined this site. Something my therapist has been telling me to do for a year. I read your story and I have to say I felt shame. I just got done complaining about not having the bottom left and bottom front teeth, and I than read your story and I feel like a naughty child. I thought I was young, my god your a baby with your whole life ahead of you. You sound so strong and secure with what you have been through. You humble me!!!! I wish you the best of luck and I hope we can become friends and help each other. Everyone is so nice and helpful, we have a whole new family on this site.
Misty
Msity
I was 42 when diagnose two years ago, smoker, light alcohol use, partial gossectomy, left neck dissection, peg, 7-09 IMRT, no chemo deemed nesseccary, 3-2011 HBO.
| | | | | Joined: Feb 2011 Posts: 82 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Feb 2011 Posts: 82 | cheers guys ! and thanks for sending me that tattoo pic Gabe Misty, thanks for the kind words. i found this site by accident by 'surfing' the net one night. i'm glad i did as well. it's been of great help. i'm in a better place now then i was before i joined. nothing about my experience has been easy, and moving on with life has some difficulties. but the people on here are very nice & helpful like you say! i'm very happy i found it. cheers ! dave
Last edited by Dave1989; 05-17-2011 10:46 PM. Reason: error
21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
| | | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | Hi dave
Having had surgery and facing treatment I can't tell you how good it is reading your posts! Brilliant need on your latest scan! Your attitude to this speaks volumes and the tattoo is a great idea
Life is for living and you are so young go for it!
Jayne x
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Feb 2011 Posts: 82 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Feb 2011 Posts: 82 | hey jayne!, thanks for your kind words. all the best with your treatment. keep fighting! i'm sure you'll get through it. stay positive and focused on the mission. best of luck dave
21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
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