| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The survey being conducted by Moffitt Cancer Center is a great way for oral cancer survivors, current patients and also their caregivers to have their say. This survey is backed by OCF and has taken months of planning before it was opened for participation. Please give just a few minutes of your time to help OCF help future oral cancer patients. It is completely confidential. To any caregiver who has a patient that is not part of the forum, please ask them to also fill this out. It gives them a chance to speak up and be heard, no matter where they live. The survey is even open to oral cancer patients who have gone thru battles with other types of cancers. While taking the survey, please just focus your answers towards what you experienced during your oral cancer treatments. At the end of the survey, in the comment box, anyone who has had another type of cancer just please list it there. Here are the specifics In order to participate, you must: � be greater than 18 years of age; � be able to speak and read standard English; � have a history of oral cancer or have cared for someone with oral cancer; � have use of a computer; and � be willing to provide informed consent. If anyone has any questions please contact Dr. Kristine Donovan at (813) 745-1818 or send an email to Dr. Donovan at [email protected] Feel free to also PM me if you have a question about the survey. THANKS!!!! Moffitt Oral Cancer 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  | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | A quick update. The survey is still going on. PLEASE take a couple minutes to complete the survey. Share it with your caregiver or if you are the caregiver, have the patient also complete it. This survey has the potential to help change how oral cancer patients are treated and what additional services will automatically be offered to them.
Right now about 100 oral cancer patients and their caregivers have taken the survey. Moffitt is looking to have a minimum of 150 responses from patients and also 150 from caregivers. Please pass it along to any other oral cancer patient or caregiver you know.
Thanks!!!
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 | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | This thread has been viewed 162 times. The original post from Dr Donovan was viewed an amazing 1447 times. With all these views it would be reasonable to think that this survey easily passed the minimum of 150 patients and 150 caregivers completing it. Unfortunately the latest numbers are not even close to that. Only 75 patients and about 40 caregivers have completed it. This is a major disappointment! I am hoping this is only due to people thinking others will do the survey so their input isnt that important. Every single completed survey counts and helps to get a better sense of what oral cancer patients really need in addition to their treatments. Every single voice matters! With over 8000 members here (many no longer active) the survey should have already met its minimum numbers. Dr Donovan has put months of hard work into preparing and tweaking the survey. I have helped her along the way and also done sample surveys to test it. PLEASE take a couple minutes to help others by doing the survey, it only takes a couple minutes. Then pass it over to your patient or caregiver to complete. It is open to anyone over 18, even if they have had another type of cancer. That would NOT exclude them from the survey. At the end add what other type of cancer you had and when answering the questions think only of your oral cancer battle. To the newer members, you are encouraged to participate in this. If anyone has questions please ask either privately by PM or reply here and if I cant answer it I will get the answer for you. Lets pitch in and help those who walk this road behind us. When we all work together we can do great things! Moffitt OC 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 | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I did the survey & have now sent the link to my husband. How refreshing that someone wants to hear from the PATIENT and CAREGIVER about what we need. I sure hope many more take the few minutes to complete this survey. GREAT survey and not "intrusive". Kinda like voting - if you didn't give your opinion you don't get to complain!!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thanks Donna and everyone who has already participated!
The survey is open to any oral cancer patient and caregiver. You do NOT have to be in the US to complete this.
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 | | | | | Joined: Jun 2010 Posts: 1 Member | | Member
Joined: Jun 2010 Posts: 1 | Please add metric options, saves mucking around with calculators.
Otherwise fine
KLo's Love of Life
Dx March 2010 Age 51
T4N1M0 SCC Tonsil, BOT, lymph node (R). No surgery
Tx Chemo x 3 cycles (cisplatin, taxotere, 5FU) plus 1 bonus round end 31/06/10. 4cm lesion not visible
Chemo/rad x35 from 12/07/10
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Hi Alex. So nice to meet you. Cheers, Linda (Simon's sister)
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Also wondering when you were going to post Alex so now lets see #2  Did the survey such a long time ago forgot about having to do the conversions. Have a great program for that and use it a lot for temperatures too. So we had a cold winters 18c degrees here but most would relate to 64f. Love to you and the love of your life  Gabriele
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
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