#148900 - 04/30/12 09:02 PM
A Study of Supportive Care Needs in Oral Cancer
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Member
Registered: 12/09/11
Posts: 4
Loc: Tampa, FL
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~ because cancer is hard ~
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#148903 - 04/30/12 09:28 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: kaddie]
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 9251
Loc: PA
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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!!!!
_________________________
ChristineSCC 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 
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#148914 - 05/01/12 12:11 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 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
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#148916 - 05/01/12 01:44 AM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Charm2017]
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Senior Member (100+ posts)
Registered: 01/05/11
Posts: 123
Loc: Massachusetts
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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
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#148917 - 05/01/12 02:01 AM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Charm2017]
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
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Done!!!
_________________________
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
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#148922 - 05/01/12 04:02 AM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Cheryld]
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 9251
Loc: PA
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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!!!
_________________________
ChristineSCC 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
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#148929 - 05/01/12 10:11 AM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: ChristineB]
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Patient Advocate (old timer, 2000 posts)
Registered: 11/03/06
Posts: 2671
Loc: TN
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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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#148934 - 05/01/12 01:52 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Anne-Marie]
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"Above & Beyond" Member (500+ posts)
Registered: 07/12/07
Posts: 939
Loc: Punta Gorda, Florida
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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!
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#148943 - 05/01/12 07:32 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: debandbill]
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Platinum Member (300+ posts)
Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
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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.
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#148949 - 05/01/12 09:42 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Shelley K]
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Registered: 06/23/07
Posts: 9251
Loc: PA
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Way to go!!!!
Keep up the great teamwork with this survey!!!!
_________________________
ChristineSCC 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
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