| | 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 | Thanks ESikon  Hey Susan. That sounds great, but i'm up in Queensland. It's a fair journey unfortunately. About a 1.5-2 hr flight. Please keep me updated if you can on how you go though. I'm unsure how these walk's work. It's something i'll look into. Hopefully her's will be a success ! Good luck While I'm here, here's a quick update on my attempt to raise awareness. I haven't heard from anyone else yet. I'll be writing up a report/article to put up on an ABC website soon. I'll post the link on here once it's published. Next time I get some time off work, i'll send some more letters to tv stations in the mail. Maybe i'll have a better chance of someone picking it up. Maybe the photos will get there attention. 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: 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 guys. Just a brief update. I've been in contact with the 'ABC Health & Wellbeing' website and my article has been edited once or twice by myself and one of their editors. The article should be up on their site next week. We're just doing any last minute changes and she's organizing a 'factbox' to help teach people about the disease. ( http://www.abc.net.au/health/) - This is the link to the website. My story will be posted on their next week.
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: 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 | Just went to the cancer section and while 8 cancers are listed OC is not one of them. Congratulations on getting your story posted Dave and I hope they will include it in that section. Great job and will look for it next week  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 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 | I cant wait to read it!!!
Thank you for spreading the word about oral cancer.
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: 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 Gabe. Hopefully they will add it to the section once the story is up. I'll post on here any updates once it's ready for the site !
Thanks Christine ! It's the very least I can do. Hopefully it's a decent read and the message gets across !
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 guys, good news! The article is now up on the website.. I wrote the article and the abc editors edited it a little bit. But it's mostly my words, except for the occasional part where they've edited it to sound a little more dramatic I think. Which I suppose is fair enough. Anyway, see what you guys think Here's the link the website main page where you can see my article. http://www.abc.net.au/health/And if you prefer the direct link, here it is: http://www.abc.net.au/health/yourstories/stories/2011/07/20/3272418.htmEnjoy, and let me know what you think! Feel free to share the article with others if you wish to also! edit: for those who have me as a friend on facebook, i've posted the link to my page. Feel free to 'share' the article. Cheers, Dave
Last edited by Dave1989; 07-19-2011 10:46 PM.
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: 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 | Excellent article Dave!!!! Thank you for making people aware of this deadly disease.
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: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Great article, Dave! I am so sorry that you have had to undergo this disease. But, your perspective and your age will have a significant impact on many who might otherwise have never known about OC. You said you wanted to be a teacher...well, there you are, teaching millions and raising awareness. My best to you!
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | 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 | Thankyou very much Christine! It's the least I can do. And thanks Anita as well! I hope it's done some good  Cheers guys 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: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | I hope other news outlets get interested in your story, David. Good luck, & may you continue to have good health.
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!
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