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#89171 01-29-2009 06:18 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
For the newer OCF members, OCF is on Facebook. Many of the forum members can be found there, myself included. This forum is wonderful and so helpful to so many. Facebook takes things a step further and adds faces to OCF's family members. Its located under The Oral Cancer Foundation.

Thanks Brian for putting OCF on Facebook.



Christine
SCC 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 smile
ChristineB #89189 01-30-2009 06:01 AM
Joined: Jan 2009
Posts: 253
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Jan 2009
Posts: 253
Christine:
I'm new to this list. Just diagnosed with tongue cancer. I like to look up the facebook page, but can't find it. Do I look under OCF or a person's name.
Thanks
Sandy Stevens


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

SandySt. #89208 01-30-2009 11:02 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
OP Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Sandy...


In the search field of facebook type.... The Oral Cancer Foundation


Christine
SCC 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 smile
ChristineB #90067 02-15-2009 09:35 AM
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
I am on Facebook too. As Christine knows...I love to put a face with a name.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #90113 02-16-2009 07:17 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I just joined Facebook but when you go to the OFC how can we tell who's who? I mean I see the pictures and their names but how do we associate that with their OFC name?


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.
davidcpa #90123 02-16-2009 10:53 AM
Joined: Sep 2008
Posts: 489
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Sep 2008
Posts: 489
David

This is the fun part of the game. You have to try to figure out who is who. smile I'm on there - can you find me? It is like Marco Polo.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
davidcpa #90124 02-16-2009 10:53 AM
Joined: Aug 2008
Posts: 716
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2008
Posts: 716
Never thought of that...

On OCF, my name is Ray1971 and on Facebook I put my full name which is Raymond Flaherty...


hello my name is Raymond Flaherty, aka Ray1971...LOL...everyone can just call me Ray and some call me Ray-Ray...I don't know why..they just do...


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
Ray1971 #90128 02-16-2009 11:40 AM
Joined: Sep 2008
Posts: 489
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Sep 2008
Posts: 489
David I think I spotted you dancing with a lovely lady??

Nice curls Ray.

Isn't it great to put a face with a name?

I'm Patricia Goodwin on facebook.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #90130 02-16-2009 12:15 PM
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
I'm Suzanne Ryan on Facebook


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #90145 02-16-2009 04:50 PM
Joined: Aug 2008
Posts: 716
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2008
Posts: 716
Thank you for the curl comment Patty...Somehow through being dx'd with cancer and loosing 40 to 50 pounds I managed to get a little thin...I'm hoping as my eating habits improve so does my hair...it could be worse. The freckles the radiation gave me are almost gone. Man, the things I worry about! I find if I think about the smaller issues I don't think about the larger ones--Hey, it works for me to make my life less stressful.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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