| | Joined: Jul 2012 Posts: 1 Member | OP  Member
Joined: Jul 2012 Posts: 1 | Ive actually been here for awhile now, but, this is all so new to me. Most of you all know me on Facebook, I am Ron Baker, and I am so happy to be here with all of you. If you ever need someone to talk, vent, cry to, Im here. Ive been through all of this within the past year and 5 months. What have I been through? Well, stage 4 squamous cell in right cheek, free flap performed March 31, 2011 at the age of 42. Teeth removed April 25th, 2011 to perform radiation ... 6 weeks, 5 days a week. Squamous Cell re-occurence, stage 4, August 2011. Pectoral Flap performed September 10th, 2011. I know I havent been through as much as alot of you, but, when needed, Im here. Hope to see and hear from of my good friends from FB here, and I am sure I will! As I become more involved, more of my story will come out, for right now, though, this is a HI EVERYBODY!!
Stage 4 SCC in rt cheek, free flap performed 3/11 Teeth removed 4/11 to perform radiation-6 weeks, 5 days a week. SCC re-occurence stage 4-8/11. Pectoral Flap performed 9/11 "It is what it is!" RONwww.facebook.com/biskittwitter.com/RonHawkeyeBaker
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Hi Ron! Welcome to OCF!!! So glad you have decided to join. I think we already are friends over on facebook but I dont have much time to spend there. I sometimes see bad advice given there which makes me nuts since Im an admin here and OCF must always have correct medical info. Wrong info scares me that someone will get hurt.
If you see my signature you will see that I also had a tumor inside my cheek. There arent alot of that type of oral cancer here but we all go thru the same awful things. Guess thats what helps to make us all so connected. You have gone thru quite alot and its always great to have another survivor aboard.
If you want to add a signature, its easy. Go to the My Stuff tab and click on the drop down menu, my profile. Then scroll to the bottom and type your info in the white box. It helps everyone to get to know you quicker.
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Christine,
I am also on Facebook on the Survivors of head and neck cancer page. (I think that's what it is called.). I do wish that some of the folks on there would go to the OCF site as well. There is so much more information here. I do look at the Facebook page, but this is so much better.
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.
| | | | | 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 | Hi and welcome to OCF Ron.
We are also FB friends but as Christine writes this is the place to come for correct medical information and advice.
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
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome to the party Pal! (sorry great line from a great movie!)
So great to talk to you this morning brotha, glad you finally made it to these boards! Represent!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Facebook chats are not in any way even close to being a reliable source for facts or medical info. Facebook is a social media which is exactly that..... social. There is no comparison between facebook and OCF. Many times I end up being added to different chats on facebook. That does NOT mean I endorse any of them, it just means someone thought enough of me to want me to be part of their group.
I spend my online time on here, the OCF forum helping sick people and their caregivers. Im not sure if everyone knows but OCF is part of the HON Code which is the Health on the Net Code. That means OCF provides correct, verifiable medical info. OCF has also won the Web Health Awards 2010 Merit Winner. These are HUGE accomplishments and with that comes major responsibilities too. As an admin one of my duties is to make certain that only correct medical info is given on the forum. This keeps me pretty busy with little time for facebook or any other sites. If I check in on any of the chats, I continually see wrong advice given which worries me about the safety of the unwitting patients who depend on the wrong place for help. I always attempt to steer patients over to the OCF forum. Im so glad to finally begin seeing several of the chat members join our forum.
Sorry Ron!!!! I did NOT intend to hijack your introductory post. I had to explain why its such a big deal when patients depend on group chats for help instead of OCF which has an excellent reputation for giving correct info. I really am very glad you have joined our forum!!!!
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | G'day Ron. Nice to meet you. I will really have to bite the bullet and get a Facebook account.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
