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#156396 - 10/18/12 01:28 AM Your input needed  
Joined: Jun 2007
Posts: 9,541
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,541
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
#156406 - 10/18/12 11:13 AM Re: Your input needed [Re: ChristineB]  
Joined: Nov 2006
Posts: 2,671
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)
Anne-Marie  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
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.)



#156415 - 10/18/12 02:35 PM Re: Your input needed [Re: ChristineB]  
Joined: Jun 2007
Posts: 9,541
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,541
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
#156421 - 10/18/12 03:08 PM Re: Your input needed [Re: ChristineB]  
Joined: Jun 2007
Posts: 5,260
EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
You know my OC history pretty well Christine. If you find it worth being included let me know.

Last 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
#156425 - 10/18/12 04:52 PM Re: Your input needed [Re: ChristineB]  
Joined: Jun 2007
Posts: 9,541
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,541
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
#156433 - 10/19/12 12:07 AM Re: Your input needed [Re: ChristineB]  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
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 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#156449 - 10/19/12 02:19 PM Re: Your input needed [Re: ChristineB]  
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
KP5  Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
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 10/12 and 10/13 and ct in 6/14
#156452 - 10/19/12 02:24 PM Re: Your input needed [Re: ChristineB]  
Joined: Jun 2007
Posts: 9,541
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,541
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
#156462 - 10/19/12 04:12 PM Re: Your input needed [Re: ChristineB]  
Joined: Jul 2009
Posts: 1,362
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,362
Los Angeles
I'll send my info today, Christine.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 7 years all clear in 6/16
#156508 - 10/20/12 06:37 PM Re: Your input needed [Re: ChristineB]  
Joined: Jun 2009
Posts: 440
ESikon Offline
Platinum Member (300+ posts)
ESikon  Offline
Platinum Member (300+ posts)

Joined: Jun 2009
Posts: 440
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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