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#156396 - 10/18/12 01:28 AM Your input needed
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8396
Loc: PA
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!!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#156406 - 10/18/12 11:13 AM Re: Your input needed [Re: ChristineB]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2596
Loc: TN
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 02:35 PM Re: Your input needed [Re: ChristineB]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8396
Loc: PA
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!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#156421 - 10/18/12 03:08 PM Re: Your input needed [Re: ChristineB]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
You know my OC history pretty well Christine. If you find it worth being included let me know.


Edited by ChristineB (10/18/12 04:53 PM)
_________________________
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.
--- Passed away 5/14/14, will be greatly missed by everyone here

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#156425 - 10/18/12 04:52 PM Re: Your input needed [Re: ChristineB]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8396
Loc: PA
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.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#156433 - 10/19/12 12:07 AM Re: Your input needed [Re: ChristineB]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8309
Loc: Gulfport, Florida
I'll volunteer if you need me.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#156449 - 10/19/12 02:19 PM Re: Your input needed [Re: ChristineB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
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 02:24 PM Re: Your input needed [Re: ChristineB]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8396
Loc: PA
Anyone who would like to be included, please email your story with a photo to Jamie@oralcancerfoundation.org

Thanks for participating!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

Top
#156462 - 10/19/12 04:12 PM Re: Your input needed [Re: ChristineB]
David2 Online   content
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1267
Loc: Los Angeles
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 | Hit 5 years all clear in 6/14

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#156508 - 10/20/12 06:37 PM Re: Your input needed [Re: ChristineB]
ESikon Offline
Platinum Member (300+ posts)

Registered: 06/22/09
Posts: 440
Loc: Texas
I suppose I might be able to! Lol
_________________________
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

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