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Joined: Jun 2007
Posts: 10,507
Likes: 3
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 3
WE NEED YOUR HELP FOR RESEARCH ABOUT HOW
HEAD AND NECK CANCER IMPACTS COMMUNICATION
Who is doing the research?
 Researchers in the Departments of Speech and Hearing Sciences, Otolaryngology-Head & Neck Surgery, and Rehabilitation Medicine at the University of Washington.
What is the research about?
 We want to learn more about how head and neck cancer impacts communication in everyday activities. We are developing a questionnaire to use in research and in otolaryngology and speech clinics. The information you share will be used to develop and test this questionnaire. We also want to know about how treatment for head and neck cancer affects communication over time.
What will I be asked to do?
 There are a number of procedures that you may do, based upon your eligibility
 You will be asked to participate in the study two times. The sessions will take place 12 months apart.
 You will be asked to fill out questionnaires that ask about the impact of head and neck cancer on different activities such as work and home, as well as other health symptoms
 You may mail the questionnaires from home or fill them out on a website
 You may be asked to participate in an interview to tell us what affects your speech
 Your participation is voluntary. The sessions will each take approximately 1 hour. You may be eligible to participate in up to 2 sessions at each time point.
Who can participate?
 Adults who speak, read, and write English
 Adults who are 18 years or older
 Individuals who are at least 2 years post-treatment for head and neck cancer and who live at home
 It does not matter what kind of treatment you had for your head and neck cancer
Will I be compensated?
 You will receive $20.00 for completing the questionnaires and $20.00 for completing the interview to compensate you for your time.
 You will receive this compensation for each completed time point.
Does participation affect any treatment you are receiving?
 NO! Participation in this study is entirely independent of any medical treatment you may be receiving.
 You will continue your treatment as you wish regardless of whether you participate in this study or not. You are free to discontinue your participation in this study at any time.
How can I learn more?
 You can ask your speech-language pathologist more about this study, or you can give them permission for the researchers to contact you. You can also call Tanya Eadie, Ph.D., at the University of Washington at 206-616-2753, or researchers in the Vocal Function Laboratory at 206-616-0312. The voice mail is private. Only researchers in the laboratory have access to the voice mail. You can also send an e-mail to: vocalfx@uw.edu. Please note: If you choose to contact us by e-mail that we cannot guarantee the confidentiality of any information sent or received in this manner.


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
Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
I will call them tomorrow morning. Thank you for giving us the opportunity to be involved in this research.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
I gladly participated in this two part research questionnaire a year ago. The follow-up, 2nd part, was completed about two months ago, and feels good that it may help any future head and neck cancer patients.

Thank you


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jun 2007
Posts: 10,507
Likes: 3
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
OP Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 3
Thank you very much Jo and Paul!!!

Its thru studies like this that future OC patients will reap the benefits of our experiences. The studies usually take only a few minutes to complete.

Another study will be coming early next year. Lets all work together to make sure it is successful.

Thank you 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
Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
You are welcome ! I am all for professionals gathering information from those who have been in the trenches.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***


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