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Joined: Mar 2008
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"OCF Down Under"
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"OCF Down Under"
Platinum Member (300+ posts)

Joined: Mar 2008
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Some footage of a patient having their head and shoulders bolted down under the mask on the radiotherapy table before a treatment would make for some confronting viewing. That would make anyone sit up in their chair and get their attention.

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: Aug 2007
Posts: 1,301
"OCF Down Under"
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"OCF Down Under"
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Joined: Aug 2007
Posts: 1,301
Great idea Karen.
Also one in the hospital with the many tubes connected. Plus having to write on a board due to not being able to speak due to the trach.
A nurse sucking the mucus from the track site also..can still remember the sound!!!


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"
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"OCF Down Under"
Platinum Member (300+ posts)

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Ooohhhh my goodness yeah, the horrible trache and the suction machine.... that sound used to haunt me. I still have the occasional nightmare about that and probably will for the rest of my second life. My trache blocked up about a week after my first surgery and I had a cardiac arrest. I left this planet for a while and was brought back to life by an IC doctor David and his trusty machine!!!!


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: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
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Joined: Jan 2009
Posts: 1,844
I actually have footage of me being bolted down on the radiation table with my mask. I also have footage of me 2 weeks post op from the mandiblectomy/flap/nd...it's pretty shocking as how swollen and the incisions etc..hard to look at for me. Was going to forward it on to Megan with before and after pics but couldn't get it to upload to my mail server.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
MeganCannon
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MeganCannon
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OCF's grant proposal has been approved by Pepsi!!

Now its up to us to get the MOST votes to see that this happens! Starting today (Feb 1) through the end of the month (Feb 28th), everyone will get a chance to vote everyday for this grant. So that means you can vote on OCF's grant once everyday for the entire month. As of this morning we were ranked 76th, and we need to be in the top 2 to win the grant.

Here's the link:
http://www.refresheverything.com/oralcancerfoundation#

There's several ways to vote:
1. Sign in with your facebook email & password
2. Dont have facebook? You can sign in as a new user with your email
**You can vote once a day per email address.

PLEASE spread this around to as many people as possible! If we win this grant it will be HUGE for OCF and will be the start to see the death rate of oral cancer decrease.

Just a side note- We chose a different message to spread than the "before and after" oral cancer photos. I know that we can all agree that seeing the effects of oral cancer sends a shocking message. However, from our experience- most tend to turn their heads away from shocking images like that. It may be reality- but most people do not want to accept that reality. The only way they will spread a message is if it makes them feel good. Pepsi's campaigns, commercials, and marketing always take a positive approach leaving you feeling good about the message and wanting to pass it along to more people. In order for us to fit into Pepsi's goal is if we adapt our campaign to reflect their marketing strategy.

Once you click on the link above, you will see that OCF's campaign is taking a positive approach to share this message to the general public. We want people to know that its as simple as getting screened. But- it's your responsibility to make sure you're screened every year.

It's a hard disease to swallow, so speak out now to prevent oral cancer!

Thank you all for your help!

Last edited by MeganCannon; 02-01-2010 04:57 PM.
Joined: Jul 2006
Posts: 388
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Jul 2006
Posts: 388
Voted and posted to my Facebook profile. : )


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: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Be careful. The language on the Pepsi web site is confusing. At first blush, it seems like if you use a different email address, you can vote more than once a day for OCF. Actually while you "can" (physically able) vote multiple times with different email addresses, any one who does so RISKS HAVING ALL THEIR VOTES DISQUALIFIED. The site should be clearer in my opinion but when you read the official rules (how could I help but do so as a lawyer when clicking meant agreeing)you see that they mean person and email address to be one and the same.

Here is the official rule from Pepsi FORBIDDING USING MULTIPLE EMAIL ADDRESSES BY THE SAME PERSON
[quote]An individual can register on the Website as either a Participant or as a Voter but not both. If Sponsor determines, in its sole and absolute discretion, that any Participant or Voter has not complied with these Official Application Guidelines in any way, for example by registering more than one (1) time on the Website and/or using multiple e-mail addresses or other fraudulent means in an attempt to cast more than the ten (10) Votes allotted per day of each Voting Period or to allocate more than one (1) Vote per day to the same Application, then Sponsor reserves the right to cancel that Voter's or Participant's account, disqualify all their Votes and disqualify any Application that they have submitted and disallow any further participation by such individual in the Grant Program.[/quote]
I voted and will vote each and every day.
Charm

Last edited by Charm2017; 02-01-2010 05:43 PM. Reason: clarification

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: Oct 2008
Posts: 251
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Oct 2008
Posts: 251
[quote=RPCV]�Detection can be easy, Treatment is not!�
[/quote]
Megan,

Thanks for including this in OCF's grant proposal submitted to Pepsi!!

At last, I feel like I have contributed something to OCF other than $$s.

I voted today, and will vote every day in February. It's on my calendar! Let's do this!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
MeganCannon
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MeganCannon
Unregistered

Thanks Charm- I took back my statement above. That was wrong and if we win this, I want it to be because we deserved it, not because we figured out how to get the most votes with multiple email addresses.
Thanks to everyone who has voted thus far and spread the word to their friends on facebook! My news feed is full of people spreading the word! Keep it up!

MeganCannon
Unregistered
MeganCannon
Unregistered

The OCF Pepsi Refresh Project is now in 33rd place! Thats up from 76th yesterday! (Note- Pepsi only updates the rankings on a daily basis).

Remember- you can vote EVERYDAY until February 28th! Here's the link again-
http://www.refresheverything.com/oralcancerfoundation


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