#156396 - 10/17/12 06:28 PM
Your input needed
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Administrator, OCF Ambassador at Large
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 6738
Loc: PA
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There are some exciting things coming up in the future for OCF. One thing that will interesting is an addition to our newsletters. OCF would like to do a brief story about one person each month. We would love to hear from anyone who is interested in being featured. Its ok to add some personal things like hobbies, activities, etc. The primary focus is to be your battle with OC.
We will be doing something online as well. It could be something here on the forum, on the main OCF pages or possibly on our Facebook page. At this time we are trying to gather interesting stories about our wonderful members, a recent photo is necessary. If we get enough responses we could even feature a new person every day for April, Oral Cancer Awareness Month.
To be considered please send us a bio and either email Jamie at oralcancerfoundation.org or you can also PM me.
Thank you!!!!
_________________________
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 rad end 9/27/07, no caregiver Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 155 HBO,trismus 3/09 teeth out 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma, 2 mo hospital PICC line IV antibiotics 8 mo 10/4/10, 2/14/11 reconst surg OC 3 times in 3 years very happy to be alive 
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#156406 - 10/18/12 04:13 AM
Re: Your input needed
[Re: ChristineB]
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Patient Advocate (old timer, 2000 posts)
Registered: 11/03/06
Posts: 2227
Loc: TN
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What a wonderful idea, Christine! There are so many interesting people here with great experiences to share. Looking forward to this. Can we nominate our favorites?
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#156415 - 10/18/12 07:35 AM
Re: Your input needed
[Re: ChristineB]
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Administrator, OCF Ambassador at Large
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 6738
Loc: PA
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At this point, its completely voluntary so nominating someone might not work. Since the board is anonymous, only people who dont mind sharing their identities and ask to be part of this will be featured. So far, I havent gotten any responses. Hope to hear from at least 30 members, 50 would be even better!
_________________________
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 rad end 9/27/07, no caregiver Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 155 HBO,trismus 3/09 teeth out 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma, 2 mo hospital PICC line IV antibiotics 8 mo 10/4/10, 2/14/11 reconst surg OC 3 times in 3 years very happy to be alive
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#156421 - 10/18/12 08:08 AM
Re: Your input needed
[Re: ChristineB]
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Patient Advocate (old timer, 2000 posts)
Registered: 06/12/07
Posts: 5245
Loc: Mingo Jct., Ohio
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You know my OC history pretty well Christine. If you find it worth being included let me know.
Edited by ChristineB (10/18/12 09:53 AM)
_________________________
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
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#156425 - 10/18/12 09:52 AM
Re: Your input needed
[Re: ChristineB]
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Administrator, OCF Ambassador at Large
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 6738
Loc: PA
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Jim, Im going to move part of this over to its own thread. im very sorry you are struggling!!!!!
If you want to be included, you will need to send your info to Jamie at the OCF office or PM it to me. Even if I know your history, I cant write it for you. It must come directly from you as only you can word things how you would like ti to appear.
_________________________
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 rad end 9/27/07, no caregiver Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 155 HBO,trismus 3/09 teeth out 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma, 2 mo hospital PICC line IV antibiotics 8 mo 10/4/10, 2/14/11 reconst surg OC 3 times in 3 years very happy to be alive
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#156433 - 10/18/12 05:07 PM
Re: Your input needed
[Re: ChristineB]
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Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Registered: 09/28/06
Posts: 7413
Loc: Gulfport, Florida
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I'll volunteer if you need me.
_________________________
David
Age 58 at Dx, HPV 16+ SCC, T1N2bM0, Stage IV BOT and 2 nodes, non smoker, casual drinker and exercise nut, Cisplatin x 3 with concurrent IMRT x 35, (70 Gy), no surgery, no Peg, Tx at Moffitt over 8/28/06. June 2007, back to riding my bike 100 miles a week as if nothing happened.
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#156449 - 10/19/12 07:19 AM
Re: Your input needed
[Re: ChristineB]
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"Above & Beyond" Member (500+ posts)
Registered: 10/09/11
Posts: 676
Loc: NY
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Of course we are in. We're away right now, ALONE ;o) and next week the people from FOX5 are coming, so I will try to get something to you after all that is done. Not sure about a photo though, but the story for sure. I don't suppose we could get the picture from the CURE magazine?? Probably not! Will be in touch. Great idea by the way.
Come on Eric S., Charm and the rest of our online heroes!!
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012
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#156452 - 10/19/12 07:24 AM
Re: Your input needed
[Re: ChristineB]
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Administrator, OCF Ambassador at Large
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 6738
Loc: PA
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Anyone who would like to be included, please email your story with a photo to Jamie@oralcancerfoundation.org
Thanks for participating!!!
_________________________
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 rad end 9/27/07, no caregiver Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 155 HBO,trismus 3/09 teeth out 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma, 2 mo hospital PICC line IV antibiotics 8 mo 10/4/10, 2/14/11 reconst surg OC 3 times in 3 years very happy to be alive
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#156462 - 10/19/12 09:12 AM
Re: Your input needed
[Re: ChristineB]
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Patient Advocate (1000+ posts)
Registered: 07/12/09
Posts: 1042
Loc: Los Angeles
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I'll send my info today, Christine.
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 PET-CTs clear through 1/13!
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#156508 - 10/20/12 11:37 AM
Re: Your input needed
[Re: ChristineB]
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Platinum Member (300+ posts)
Registered: 06/21/09
Posts: 439
Loc: Texas
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I suppose I might be able to! Lol
_________________________
Dx 3/27/09 High Grade MEC T4N2M0
Elizabeth, 32, mother of 3 girls (4,6,&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
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