| 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 originally started this idea in my introductory thread. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=130391&page=8So far, I've sent an 800+ word document with photos via email to the following locations: FREE TO AIR:The Today show, Sunrise, 60 minutes, 7pm Project, A Current Affair, Today Tonight, ABC Health & Wellbeing RADIO:Nova, B105, Triple M NEWSPAPERS:Courier Mail, Daily Telegraph OTHER:news.com.au These are the places i could think of. I'm from Brisbane.. I sent out these emails about 2-3 hours ago. I just checked my emails & i've recieved a reply from ABC's Health & wellbeing. They are interested in the story. Here's the email they sent sent me.. Hi Dave Thanks so much for taking the time to write to us. It sounds like you have really been through the mill in the last year, but it's great that you are getting back on the road to good health now. We would love you to write something for us about your experience and we think the messages you hope to spread, about the disease and the importance of early detection, are incredibly important. We usually ask people to work on the piece for a Your Story themselves, but then one of the editors on our site will have a look at it and help polish it up before we publish. So there is sometimes a bit of back and forth before it's published. We will also work on some fact boxes to go in the story, explaining a bit more about the condition for the audience. We also send all our Your Story contributors a gift voucher for the ABC Shop as a thank you for their time and being kind enough to share their story. Let me know if you are still keen to go ahead. All the best Rebecca Jenkins On behalf of the ABC Health & Wellbeing team ........... ........... So promising signs early on. By the looks, this will require me to film a segment on myself if i've read correctly. Out of the listing i sent the email too, this one would be the station with the lowest ratings though. What are people's thoughts? 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: 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!!!!!
Im hoping that these news outlets will pick up on the trend that we have going on here in the US. OC is beginning to get noticed. You are doing a wonderful job at trying to educate both the public and medical community of this terrible disease.
Have you considered hosting an oral cancer screening event? They are very popular here in the US. Not sure how things like this work in other countries. 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 | thanks Christine. It's a start. I'm heading out to the gym now, but i'll have a think when i get home and i'll reply to them and go from there. Hopefully i'll hear from elsewhere as well.
As for an oral screening event, i've only heard of them through here with you guys. I'll have a look into it. I've gotta go now for an hour or so.
talk soon
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 | Dave, I have found that most people about to do a story on HPV or Oral Cancer will first contact a local CCC, in this case Moffitt, and if the CCC is aware of your desire to speak on the topic they will refer the reporter to you so I have found it very helpful to make sure that Moffitt's PR dept had all my info. Good luck, you can make a difference!
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 475 | Hi Dave, great news!!! Keep up the good work!!
Would love to help if you do decide to do a screening or any other event over there!!!
One of our other members also inquired about doing a walk in Australia!!! Woudn't that be great to have several!!!
Contact me if you need help and are pursuing!!!
All my best, Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | 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 | Good for you Dave, You will need to keep us posted when something gets published or goes to air. We get most of the same programs in Sydney. I have 1 OC maroon braclet and sticker left. If I did not send you one before and you would like one just send you address in a PM. As davidcpa says "Good luck, you can make a difference!" 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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Hi Dave
Sorry I didn�t read your thread earlier. You are doing great work trying to get the word out about oral cancer.
I�m in regular contact with the Cancer Council and Peter McCallum Cancer Centre in Victoria helping to improve services and assist with projects for Head and Neck cancer patients. Not only awareness, but also assistance and aftercare for oral Cancer survivors in Victoria is incredibly low . Several other cancer survivors I know have been writing to various groups including the Minister for Health + Local and Federal Members of Parliament for assistance.
There was a young man on �X Factor� a couple of years back - his name is Karl Dimachki. I�m not 100% sure, but I think he was from QLD also. He had tongue cancer and was trying to get the word out. I had a quick look, he is on Face Book. It might be worth teaming up with Karl as he might have some contacts he could share with you.
If there is anything I can do from here, please send me a PM.
Good luck! Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | 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 Thankyou for all the replies, support and advice you're giving me. It's hugely appreciated. Hey David, thanks. I'm seeing my surgeon tomorrow morning for a checkup. Maybe he'll be able to help point me in the right direction. Hey Susan, thanks ! I'm all for trying to organise something like a screening or fundraising walk. It may take some time and planning but it's definitely worth pursuing. Thanks for the offer! Thanks Gabe I've recently recieved a heap of armbands and brochures when i ordered a couple of shirts online. So i should be right at this stage, but thankyou ! Hey Karen. It sounds like you're doing great work. I can already tell it's tough work getting the word out, but it's definetly worth the effort. I'll have a look into writing into government, minister of health, etc. Thanks for the advice! I was actually watching the X factor show. That was post surgery, pre treatment for me from memory. He was very inspiring. I actually watched his video back a few times during my treatment. I didn't realise he was on facebook. I'll try and add him on there. Thankyou ! Again, thanks everyone for the advice. Sorry I couldn't get on here any earlier tonight. I've been in contact with the ABC page, and i'm going to write up a report they'll post on their website. When i have more details i'll post on here. 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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Good luck Dave! The reward of spreading awareness is so huge, so glad you decided to help!
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 2008 Posts: 475 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 475 | Hey Dave, I am in the process of helping Jeanna Edwards organize her walk iin Australia!!! Maybe you can help, not sure if you are near her or not, she is near Carlton, Vic or Mordialloc, hope I got that right!!! Are you near there? We are in the early process of getting a date and location.
Let me know!!
Thanks so much!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | 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!
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Great job on the story. You are an excellent communicator. Do you think that teaching is still a possibility?
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | 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 Marlene. I sent the link to a couple of sites today. It's the weekend though, so I doubt I'll hear back until next week, if at all. Fingers crossed.. Hey Maria, Thanks! I re-started my Online (or distance education) University degree this week. A Bachelor of Education- Sport, Health & Physical Education. So far so good, and i'm very confident i'll be able to teach if I continue to have good health. I work outdoors in a physical job, so that side of things i'll be fine in. My speech is quite good once i've woken up properly and stretched the jaw & surrounding muscles 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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Dave - glad to hear it and study hard!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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