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#148900 - 04/30/12 09:02 PM A Study of Supportive Care Needs in Oral Cancer  
Joined: Dec 2011
Posts: 4
kaddie Offline
Member
kaddie  Offline
Member

Joined: Dec 2011
Posts: 4
Tampa, FL


~ because cancer is hard ~
#148903 - 04/30/12 09:28 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
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
#148914 - 05/01/12 12:11 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
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
#148916 - 05/01/12 01:44 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Charm2017]  
Joined: Jan 2011
Posts: 123
kenswife Offline
Senior Member (100+ posts)
kenswife  Offline
Senior Member (100+ posts)

Joined: Jan 2011
Posts: 123
Massachusetts
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
#148917 - 05/01/12 02:01 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Charm2017]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
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
#148922 - 05/01/12 04:02 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Cheryld]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)

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PA
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
#148929 - 05/01/12 10:11 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Nov 2006
Posts: 2,671
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)
Anne-Marie  Offline
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Joined: Nov 2006
Posts: 2,671
TN
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.)



#148934 - 05/01/12 01:52 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Anne-Marie]  
Joined: Jul 2007
Posts: 939
debandbill Offline
"Above & Beyond" Member (500+ posts)
debandbill  Offline
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Joined: Jul 2007
Posts: 939
Punta Gorda, Florida
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
#148943 - 05/01/12 07:32 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: debandbill]  
Joined: Aug 2005
Posts: 307
Shelley K Offline
Platinum Member (300+ posts)
Shelley K  Offline
Platinum Member (300+ posts)

Joined: Aug 2005
Posts: 307
North Hills, CA
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.
#148949 - 05/01/12 09:42 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Shelley K]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
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
#148951 - 05/01/12 10:39 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
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]  
Joined: Dec 2011
Posts: 4
kaddie Offline
Member
kaddie  Offline
Member

Joined: Dec 2011
Posts: 4
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.

Kris






~ because cancer is hard ~
#148958 - 05/02/12 01:02 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
KP5  Offline
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Joined: Oct 2011
Posts: 805
NY
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 10/12 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]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
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.

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

Last edited by Charm2017; 05/03/12 02:11 PM. 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]  
Joined: Jan 2009
Posts: 71
Ray in Texas Offline
Supporting Member (50+ posts)
Ray in Texas  Offline
Supporting Member (50+ posts)

Joined: Jan 2009
Posts: 71
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.
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)
#149034 - 05/03/12 07:06 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Ray in Texas]  
Joined: Jul 2011
Posts: 945
Maria Offline
"Above & Beyond" Member (500+ posts)
Maria  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
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]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
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


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
#149074 - 05/04/12 04:35 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Sep 2009
Posts: 697
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)
AnitaFrances  Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 697
Media, PA
Did the survey, too.


Anita (63)
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]  
Joined: Oct 2006
Posts: 209
MikeG Offline
Gold Member (200+ posts)
MikeG  Offline
Gold Member (200+ posts)

Joined: Oct 2006
Posts: 209
Ohio
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.
#149161 - 05/06/12 03:08 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: MikeG]  
Joined: Apr 2012
Posts: 32
KenEggman Offline
Contributing Member (25+ posts)
KenEggman  Offline
Contributing Member (25+ posts)

Joined: Apr 2012
Posts: 32
VA, USA
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
#149239 - 05/07/12 08:49 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Ray in Texas]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
Thanks to everyone who has participated in this very important survey!!! I am hoping that every single active member will take just a couple minutes to fill out this survey. Any member who is a caregiver should also ask the patient to help by filling it out too. Even if they are not active on the forum, they can still be part of this survey. Any patients who have already filled out the survey, please ask your caregiver to take a couple minutes to also fill this out.

The results will help the future oral cancer patients. I hope everyone can work together to help make a difference!


THANKS!!!!


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
#149367 - 05/10/12 03:38 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Dec 2011
Posts: 4
kaddie Offline
Member
kaddie  Offline
Member

Joined: Dec 2011
Posts: 4
Tampa, FL
Thanks to all of you who have participated thus far in the Survey of Supportive Care Needs in Oral Cancer.

To date, 42 individuals have completed the survey. The majority of these individuals are caregivers. This is a great thing - the needs of caregivers often go unheard.

We need to hear from patients too!

There is a real lack of research available about oral cancer patients and survivors and the psychosocial / psychological aspects of oral cancer.

Please take a few minutes to complete the confidential survey. Your responses are anonymous; there is no way for us to identify you by your responses.


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


Thank you in advance for your time and effort.

If you have questions about the study, please call Kristine Donovan, PhD at (813) 745-1818 or send an email to oral.cancer@moffitt.org





~ because cancer is hard ~
#149380 - 05/10/12 07:14 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
So far 42 is very good!

I hope more patients will participate. This is our chance to get heard!!!! The study is so important to how future oral cancer patients will be treated and what services will automatically be offered to them.

Come on patients from anywhere in the world, lets all take a few minutes and get noticed!


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
#149390 - 05/11/12 02:13 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Aug 2007
Posts: 1,301
Gabe Offline
"OCF Down Under"
Gabe  Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Sydney NSW Australia
Done by an "OCF Down Under" member wink


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

#149391 - 05/11/12 02:24 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: Gabe]  
Joined: Mar 2011
Posts: 1,005
tamvonk Online content
"OCF Kiwi Down Under"
tamvonk  Online Content
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,005
New Zealand
I too, down under, have done this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
#149392 - 05/11/12 02:26 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: tamvonk]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
Excellent! Thank you very much!!!

To any caregivers.... PLEASE ask your patient to help by taking the survey too. They do not have to join OCF or even come onto the forum to do the survey. This survey will impact the future of treatment protocols for oral cancer patients.


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
#149815 - 05/21/12 05:22 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
Please help participate!!!

With so many newer members recently, I am hoping they will help OCF and Moffitt CCC by taking this important survey. It only take a couple minutes. Its open to oral cancer patients/survivors and also their caregivers from any location. Its our chance to give oral cancer patients a voice and change how future patients are treated. We need to get a minimum of 150 patient responses and another 150 from the caregivers. When you complete the survey also ask your caregiver to help out or the oral cancer patient.

Moffitt Oral Cancer 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
#149834 - 05/21/12 05:05 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: May 2012
Posts: 161
AnaD Offline
Senior Member (100+ posts)
AnaD  Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 161
Illinois
Just completed the survey, very easy. Also, gave me some things to think about, A


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; Completed tx 9/12; Just completed 18 mo scans, completely clear, thank God.
#149942 - 05/24/12 12:59 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: AnaD]  
Joined: Dec 2011
Posts: 4
kaddie Offline
Member
kaddie  Offline
Member

Joined: Dec 2011
Posts: 4
Tampa, FL
Thank you to everyone who has participated in the Supportive Care Needs Survey. Please, encourage those you know who have not yet completed the survey to do so. Your participation is very important to us!

Kris


~ because cancer is hard ~
#150702 - 06/12/12 03:24 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
The survey is still going on and needs ALOT more participants. PLEASE take a couple minutes and take the survey. So far there are only 75 patients out of 150 minimum participants and 40 caregivers out of 150 needed. We really need to pitch in and work together to help other future oral cancer patients.

Please address any questions or concerns to me or Dr Donovan (kaddie screen name).

Thanks!!!


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
#150732 - 06/12/12 01:30 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
Thanks Ray, and everyone else who has already participated!

This survey is very important and is backed by OCF. Location does not exclude anyone, its open to all OC patients and their caregivers.

Moffitt OCF Survey

Last edited by ChristineB; 06/12/12 01:33 PM. Reason: add link

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
#150801 - 06/13/12 10:53 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Feb 2010
Posts: 79
Cathi Carpenter Offline
Supporting Member (50+ posts)
Cathi Carpenter  Offline
Supporting Member (50+ posts)

Joined: Feb 2010
Posts: 79
Aurora, CO
Done!

Cathi


57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends

*** 1-7-16 passed away unexpectedly ***
#150803 - 06/13/12 01:58 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: ChristineB]  
Joined: Jun 2012
Posts: 31
TimD Offline
Contributing Member (25+ posts)
TimD  Offline
Contributing Member (25+ posts)

Joined: Jun 2012
Posts: 31
San Antonio, TX
Christine:

I completed the survey a few weeks ago from a link on the OCF Facebook page. It was very comprehensive and had some good information.


Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
#151911 - 07/11/12 12:36 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
The Moffitt survey is still going strong, There are several newer members here who may not be aware of this important project. Please take a few minutes and give your thoughts and opinions on this confidential survey. It has the potential to help future OC patients with offering more necessary services instead of the patient always pushing to be their own advocate.

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



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
#151954 - 07/12/12 03:56 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Oct 2006
Posts: 383
Steve F. Offline
Platinum Member (300+ posts)
Steve F.  Offline
Platinum Member (300+ posts)

Joined: Oct 2006
Posts: 383
Hamilton, Ohio
Completed it tonight and shared it with my wife to complete as well.
Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

#151983 - 07/12/12 10:41 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
Thanks Steve! Feel free to pass it along to any other oral cancer survivor or caregiver you know.


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
#153203 - 08/13/12 08:58 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jul 2012
Posts: 2,993
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,993
NYC
This is for oral Cancer. I have Oropharyngeal cancer. Should I take the survey?


10/09 T1N2bM0 Tonsil
11/09 TPF IC 6 Months Hosp Tx Stopped
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap Graft IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#154020 - 09/02/12 10:00 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 5,260
EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
I just finished this and enjoyed it. I like the questions that I was aked . Very easy . Now it's Isosource time. Gotta fire up that tube to keep this kinny body happy.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#154854 - 09/21/12 09:20 PM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Sep 2012
Posts: 35
lynney0814 Offline
Contributing Member (25+ posts)
lynney0814  Offline
Contributing Member (25+ posts)

Joined: Sep 2012
Posts: 35
NJ USA
Done! It's nice to be able to do even the smallest of things that might help people deal with this dis-ease.


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
#155535 - 10/03/12 03:03 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
PS, anyone who has already completed the survey, thank you! Only one survey per patient.

To the caregivers reading this, please feel free to participate. Your opinions are also wanted in this survey. If you are a caregiver please pass the survey along to your oral cancer patient. To any oral cancer survivor who has completed the survey, please also give this to your caregiver to complete. The more who participate, the better Moffitt will understand what us oral cancer patients go thru.


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
#156631 - 10/23/12 11:43 AM Re: A Study of Supportive Care Needs in Oral Cancer [Re: kaddie]  
Joined: Jun 2007
Posts: 9,714
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,714
PA
Last call for our OCF members to have their say. The survey is coming to a close very soon.

While it is still open, any patients or caregivers who have not yet taken the survey, PLEASE do it now. It only takes a few minutes, is completely confidential and will help provide a more well rounded approach to future oral cancer patients. The survey is to help understand what we as patients (or caregivers) go thru so additional services can automatically be offered to help us. More detailed info is in a couple posts above.

Any patient that has done the survey, please ask your caregiver to also take it. The same goes for our wonderful caregivers, please ask your patient for their help, their input is very important.

Thanks to everyone who has given their support already!

Moffitt Supportive Care 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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