#148951 - 05/01/12 03:39 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: ChristineB]
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Platinum Member (300+ posts)
Registered: 11/30/09
Posts: 433
Loc: Ohio
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I completed it as well.
_________________________
Female, nonsmoker, 67, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 6 clear scans! Port out 9/11.
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#148954 - 05/01/12 04:34 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: zengalib]
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Member
Registered: 12/09/11
Posts: 4
Loc: Tampa, FL
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Thanks so much for the response thus far. I hope that everyone who participates - patients, survivors, and caregivers - finds the survey to be a productive use of both their time and energy. Your effort is much, much appreciated. So, please, do continue to encourage others to participate.
Kris
_________________________
~ because cancer is hard ~
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#148958 - 05/01/12 06:02 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: ChristineB]
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"Above & Beyond" Member (500+ posts)
Registered: 10/09/11
Posts: 671
Loc: NY
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Done!!
_________________________
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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#149025 - 05/03/12 07:11 AM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: ChristineB]
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Patient Advocate (old timer, 2000 posts)
Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
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Hey Fellow Patients/Survivors:
I did not mean to give the impression that this survey is just for caregivers. It is also for patients. So take it.
Caregivers
This could be an interesting discussion starter or just informational if you have your patient also take this survey. The questions are a little bit different but it does let an impartial third party ask all those questions of the patient that you suspect the answers to. Plus it's a rare chance for your patient to do a survey that actually cares about what they are feeling and undergoing.
Charm
Edited by Charm2017 (05/03/12 07:11 AM)
Edit Reason: typos
_________________________
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
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#149027 - 05/03/12 08:13 AM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Charm2017]
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Supporting Member (50+ posts)
Registered: 01/28/09
Posts: 66
Loc: Texas
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just finished.
_________________________
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
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#149034 - 05/03/12 12:06 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Ray in Texas]
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"Above & Beyond" Member (500+ posts)
Registered: 07/15/11
Posts: 707
Loc: Ohio
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Did mine - will have my husband do one tonight. Kris, you may have already mentioned - but will the result / summary of the survey be available?
_________________________
Caregiver to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 and 3/2012 clear, 1/2013 physical exam clear
On thyroid pills. Getting slightly less sensitive to hot peppers, and can handle sweet hungarian paprika again. Life is good.
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#149040 - 05/03/12 05:17 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Ray in Texas]
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Administrator, OCF Ambassador at Large
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 6713
Loc: PA
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Ive been assisting Dr. Donovan for several months with the survey. She said it will be published in peer-reviewed academic medical journal which is very exciting! The results will also be made available to OCF and its members. Way to go with stepping up, everyone! Lets make our voices heard!!!! Both patients and their caregivers too. Even if the patient is not part of the forum I hope they will help future oral cancer patients by giving their input. Thanks everyone!!!!! 
_________________________
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 rad end 9/27/07, no caregiver Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 155 HBO,trismus 3/09 teeth out 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma, 2 mo hospital PICC line IV antibiotics 8 mo 10/4/10, 2/14/11 reconst surg OC 3 times in 3 years very happy to be alive
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#149074 - 05/04/12 09:35 AM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: ChristineB]
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"Above & Beyond" Member (500+ posts)
Registered: 09/24/09
Posts: 629
Loc: Media, PA
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Did the survey, too.
_________________________
Anita (59)
CG to husband, Clark, 69,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture
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#149142 - 05/05/12 12:20 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: ChristineB]
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Gold Member (200+ posts)
Registered: 10/23/06
Posts: 209
Loc: Ohio
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I did just completed the survey.
Ginny
_________________________
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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#149161 - 05/05/12 08:08 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: MikeG]
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Contributing Member (25+ posts)
Registered: 04/14/12
Posts: 32
Loc: VA, USA
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Completed survey. Glad clinicians are going to the source for research information. Encouraging.
Ken
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer
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