#88040 01-14-2009 12:54 PM | Joined: Dec 2008 Posts: 11 Member | OP  Member
Joined: Dec 2008 Posts: 11 | Hello loyal posters:
Now that i have been at OCF for about a month I'm getting started on the newsletter!!!! We have some ideas about what we want to write about but i want to know if there is anything specific that people would like to read or learn more about.
Let me know what your ideas are and i will see about getting them into print. Have a great day and i hope to hear back some great ideas.
thank you,
Brittany | | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Hi Brittany,
I'd like to see information on current research and studies, obviously, but also information on the day-to-day stuff that we talk about here. Things like recommended foods when eating is tough, tips for managing PEG tubes, trachs and whatever else the docs throw at us. And a few 'feel good' stories about survivors would be great. I also think some stories about caregivers and what they go through, coping tips and that sort of thing would be great.
Just some thoughts off the top of my head...
- Margaret
Nice to see you 'onboard,' btw.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Everything we ever need to know about HPV.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | How about the upcoming Oral Cancer Awareness Walks? Also a "Help Wanted" section to get more people involved with the State Chapters and other OC events. David, we could just list your name and phone number under "Got questions about OC and HPV?" You sure have taught me a lot on the subject! Thanks!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | OK what about Carnation VHC? Those are the only 2 things I preach about.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | proper nutrition and the importance of staying hydrated
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I am along with Susan, listing all the oc walks would be great even though they will be listed on the current ocf events page, listing them in a newletter would ensure people would see them. Having oc survivors attend these walks is so inspiring to all who attend, it gives hope to others and they also represent OCF in such a good way.
And like she said, an ongoing "help wanted" for volunteers. That would be great.
Also a section on people who make a difference in the world of oral cancer. People who really are making strides in this fight. Highlighting their efforts would be inspiring as well.
Just some thoughts . . . .
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Survivor stories
possibly photos and stories about some of the loyal posters that were comfortable with it - showing the new normal and the other sides of their lives besides just the cancer
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Yes, spotlighting an OC survivor would be nice.
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Really good suggestions people. With all this to choose from, we will have to have some of these alternate from month to month, as it could become a full on magazine not a newsletter in short order. Submissions (after approval of an idea) of things written by some of you would also be interesting.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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