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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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Joined: Jun 2007
Posts: 9,591
ChristineB
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007
Posts: 9,591
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 -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 
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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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Joined: Mar 2008
Posts: 3,082
Charm2017
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008
Posts: 3,082
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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Joined: Jan 2011
Posts: 123
kenswife
Senior Member (100+ posts)
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Senior Member (100+ posts)
Joined: Jan 2011
Posts: 123
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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Joined: Dec 2010
Posts: 5,260
Cheryld
"OCF Canuck"
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010
Posts: 5,260
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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Joined: Jun 2007
Posts: 9,591
ChristineB
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007
Posts: 9,591
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 -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
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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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Joined: Nov 2006
Posts: 2,671
Anne-Marie
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006
Posts: 2,671
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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#148949 - 05/01/12 09:42 PM
Re: A Study of Supportive Care Needs in Oral Cancer
[Re: Shelley K]
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Joined: Jun 2007
Posts: 9,591
ChristineB
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007
Posts: 9,591
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 -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
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