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Joined: Dec 2011
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kaddie Offline OP
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To Oral Cancer Patients, Survivors and Caregivers,

I am a psychologist at the Moffitt Cancer Center in Tampa, FL. My colleagues and I want to learn more about the supportive care needs of persons who have ever been been diagnosed with oral cancer and oral cancer caregivers.

To this end, we are conducting a web-based survey of supportive care needs in oral cancer. The survey has the full support of the Oral Cancer Foundation. Several members of the online forum have been instrumental in the survey's creation.

To access the confidential survey, please follow the link below (or, if necessary, copy and paste the link into your web browser):

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



If you'd like more information before you access the survey:

Why are we conducting this survey? Understanding supportive care needs is a necessary first step toward providing effective psychosocial care in active oral cancer treatment and survivorship.

Who may participate? Persons who have ever been diagnosed with oral cancer and/or persons who have cared for someone with oral cancer.

In order to participate, you must:
� be greater than 18 years of age;
� be able to speak and read standard English;
� have a history of oral cancer or have cared for someone with oral cancer;
� have use of a computer; and
� be willing to provide informed consent.

How long will the survey take to complete? About 15 minutes.

Who is conducting this study? This study is being conducted by psychosocial researchers at the Moffitt Cancer Center in Tampa, Florida with the support of the Oral Cancer Foundation. This is a non-funded study.

How do I access the survey? To access the survey, click on the link below or copy and paste the link into your web brower:

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

Who should I contact if I have questions about the survey? If you have questions about the study, please call Dr. Kristine Donovan at (813) 745-1818 or send an email to Dr. Donovan at [email protected]

If you have ever been diagnosed with oral cancer or provided care for someone with oral cancer, please consider taking this survey. All of the information you provide is confidential. Thank you in advance for your time and effort.


~ because cancer is hard ~
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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
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I hope everyone will take a couple minutes and help Dr Donovan with the survey. It is confidential and will give much needed feedback about what can be fixed regarding our treatment and after care. This is very important to help future oral cancer patients! Lets all pitch in and show them how supportive OCF members can be.

Please help!!!!




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: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2008
Posts: 3,082
Hey Hey Caregivers. Here is your chance to document what works and what didn't. My wife just took this survey. It brought back lots of memories of times better forgotten but it's important to get academic credentials of the existential tribulations caregivers endure. Plus Dr. Kris has a great sense of humor and my personal endorsement. So take the survey
oh; WARNING; Take a minute to write out the definitions of the choices before taking the multiple choices since they make sense but not quite common parlance. My wife winged it with my cynical translation of Low Need as: Concerned/ difficult, I needed Help but never got it so did it Myself.
Because Satisfied did not quite get it

Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jan 2011
Posts: 123
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Senior Member (100+ posts)

Joined: Jan 2011
Posts: 123
I just took it. Thank you for thinking of us caregivers!


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Done!!! smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
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Patient Advocate (old timer, 2000 posts)

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Caregivers are in for the ride right along with the patient. How could they be left out of this survey? So glad that its off to a good start!!!


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: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Just did it! How great that caregivers are included in this.


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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Posts: 939
"Above & Beyond" Member (500+ posts)
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Posts: 939
Done!



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Aug 2005
Posts: 307
Platinum Member (300+ posts)
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Joined: Aug 2005
Posts: 307
Done!


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
Likes: 6
Way to go!!!!

Keep up the great teamwork with this 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
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