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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
Thanks to everyone who has participated in this very important survey!!! I am hoping that every single active member will take just a couple minutes to fill out this survey. Any member who is a caregiver should also ask the patient to help by filling it out too. Even if they are not active on the forum, they can still be part of this survey. Any patients who have already filled out the survey, please ask your caregiver to take a couple minutes to also fill this out.

The results will help the future oral cancer patients. I hope everyone can work together to help make a difference!


THANKS!!!!


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
Joined: Dec 2011
Posts: 4
kaddie Offline OP
Member
OP Offline
Member

Joined: Dec 2011
Posts: 4
Thanks to all of you who have participated thus far in the Survey of Supportive Care Needs in Oral Cancer.

To date, 42 individuals have completed the survey. The majority of these individuals are caregivers. This is a great thing - the needs of caregivers often go unheard.

We need to hear from patients too!

There is a real lack of research available about oral cancer patients and survivors and the psychosocial / psychological aspects of oral cancer.

Please take a few minutes to complete the confidential survey. Your responses are anonymous; there is no way for us to identify you by your responses.


https://mysurvey.moffitt.org/Checkbox/SupportiveCareNeedsinOralCancer.aspx


Thank you in advance for your time and effort.

If you have questions about the study, please call Kristine Donovan, PhD at (813) 745-1818 or send an email to [email protected]





~ because cancer is hard ~
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
So far 42 is very good!

I hope more patients will participate. This is our chance to get heard!!!! The study is so important to how future oral cancer patients will be treated and what services will automatically be offered to them.

Come on patients from anywhere in the world, lets all take a few minutes and get noticed!


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
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
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"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Done by an "OCF Down Under" member wink


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 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
I too, down under, have done this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Excellent! Thank you very much!!!

To any caregivers.... PLEASE ask your patient to help by taking the survey too. They do not have to join OCF or even come onto the forum to do the survey. This survey will impact the future of treatment protocols for oral cancer patients.


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
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Please help participate!!!

With so many newer members recently, I am hoping they will help OCF and Moffitt CCC by taking this important survey. It only take a couple minutes. Its open to oral cancer patients/survivors and also their caregivers from any location. Its our chance to give oral cancer patients a voice and change how future patients are treated. We need to get a minimum of 150 patient responses and another 150 from the caregivers. When you complete the survey also ask your caregiver to help out or the oral cancer patient.

Moffitt Oral Cancer Survey





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
Joined: May 2012
Posts: 162
Likes: 1
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 162
Likes: 1
Just completed the survey, very easy. Also, gave me some things to think about, A


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
Joined: Dec 2011
Posts: 4
kaddie Offline OP
Member
OP Offline
Member

Joined: Dec 2011
Posts: 4
Thank you to everyone who has participated in the Supportive Care Needs Survey. Please, encourage those you know who have not yet completed the survey to do so. Your participation is very important to us!

Kris


~ because cancer is hard ~
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
The survey is still going on and needs ALOT more participants. PLEASE take a couple minutes and take the survey. So far there are only 75 patients out of 150 minimum participants and 40 caregivers out of 150 needed. We really need to pitch in and work together to help other future oral cancer patients.

Please address any questions or concerns to me or Dr Donovan (kaddie screen name).

Thanks!!!


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
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