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#148951 - 05/01/12 10:39 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
I completed it as well.
Female, nonsmoker, 70, 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. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

#148954 - 05/01/12 11:34 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: zengalib]
kaddie Offline

Registered: 12/09/11
Posts: 4
Loc: Tampa, FL
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.


~ because cancer is hard ~

#148958 - 05/02/12 01:02 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
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 10/12 and 10/13 and ct in 6/14

#149025 - 05/03/12 02:11 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
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.

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.


Edited by Charm2017 (05/03/12 02:11 PM)
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

#149027 - 05/03/12 03:13 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Charm2017]
Ray in Texas Offline
Supporting Member (50+ posts)

Registered: 01/28/09
Posts: 71
Loc: Texas
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.
6/12/09-PET, PEG out
(all clean)

#149034 - 05/03/12 07:06 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Ray in Texas]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
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?
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

#149040 - 05/04/12 12:17 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Ray in Texas]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9435
Loc: PA
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!!!!! smile
SCC 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 smile

#149074 - 05/04/12 04:35 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/25/09
Posts: 695
Loc: Media, PA
Did the survey, too.
Anita (62)
CG to husband, Clark, 73,
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
Fractured jaw w/surgery 7/14

#149142 - 05/05/12 07:20 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]
MikeG Offline
Gold Member (200+ posts)

Registered: 10/23/06
Posts: 209
Loc: Ohio
I did just completed the survey.
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.

#149161 - 05/06/12 03:08 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: MikeG]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Completed survey. Glad clinicians are going to the source for research information. Encouraging.

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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