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Unfortunately for us we have all earned that PhD in Cancer and I'm sure we may have said something "uneducated" before our advanced degree so I usually don't hold such statements against the person and I try to educate them if I can.


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.
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Just venting here and now a calmer mind prevails, thank you! I am usually very calm as well, educate them, not sure I want to bother. I will just bite my tongue, can't feel it anyway.


Adele,
mucoepidermoid carcinoma of the submandibular gland, 05/06, left neck dissection, gland and tumor removed, intermediate grade, margins negative, 9 lymph nodes negative, no rad, no chemo,
11/07 surgical biopsy of lymph node left neck, no cancer!
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well, today was out first day of school. I still have some problems with my sssss, they sounds more like thththth. I was trying to say a kids name with a lot of sss, and my principal repeated what I said making fun how it sounded. Then I slowed downed and tried to say the name correctly. I think she felt bad after that. She said she was sorry and sometimes she talks like that. I responded "I am missing part of my tongue.' I wanted to go off and say what is your excuse. But I didn't. Why are people so cruel. i guess they just do not think about what they are saying. Some people tell me that I sound wonderfull, but I do not feel like I do.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Tell that principal it's inexcusable to humiliate you in public. She owes you a big apology. She also isn't a good role model for the kids.
It might make it easier for you to explain to the kids that you had surgery on your tongue and some of your words might sound different. Kids are usually very accepting if you tell them what's going on, unfortunately it's the adults who are usually the cruelest. I know my husband had to tell a lot of people in the courts what had happened so that they would be more understanding. Sorry you had to go through this
Good luck


caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
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Now how many overly people do you know that have a lick of common sense? They have book learning and that is about it.


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
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Did it again LOL overly educated


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
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Posts: 8,311
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Whenever I testify as an expert witness I always try to get the Judges permission , IN ADVANCE, to have a cup of water with me on the stand. I found out the hard way that this approach is the best. Occasionally I will also have to stop myself mid discussion with new clients to explain my dry mouth condition. Just comes with the new territory.


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 2007
Posts: 1,301
"OCF Down Under"
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My speech has improved with each surgery to correct the join between tongue and flap. I sounded different after each one.
That�s why I put speech therapy on the back burner after the original operation.
One thing I will always remember is talking to a supplier on the phone.
He asked me what I was eating mad
I told him I wasn�t eating anything and the reason why I sounded the way I did�..
It went quite on the other end of the phone for a while....then the apologies started..
Needless to say I don�t deal with this person anymore.


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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Sounds all too familiar. At least your caller got quiet. We were the victims of prank calls at 1 am from some kids who were making a pun on our last name and when I asked them to quit calling, they started calling back even more frequently but this time mocking my speech and asking for the "guy who talk funny" with a garbled imitation of my impediment. We had to disconnect the phones at midnight for a week to get rid of them.
and forget about calling any support help or customer service line that has been outsourced overseas. I quickly tired of "I sorry, no understand, thanking you for repeating please".


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
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Amazing. No sooner does Brian Hill post about how scammers and people trying to sell stuff on OCF sneakily hide their pitches in their signature line with a link to the commercial web site, then I am a victim of the same underhanded behavior on a post of mine that had no other responses. I did behave myself in my reply this time and try to be less "derogatory" since it was just a pitch for DVDs and not a mexican clinic. Still I will never ever use that web site and I will make sure every friend and family member boycotts it also.
So now I have something else to "hate": people who try and profit from our misery and misfortune by trying to take the one safe harbor here at OCF away from us.


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
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