| | 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 | Oh wait until your Tx is over, EVERYONE will start off EVERY conversation with .... So how are you doing? I heard that literally for years post Tx.
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: Sep 2012 Posts: 74 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 74 | Oh yeah, too true. I've already endured that for nearly 3 years with no end in sight!
mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
| | | | | Joined: Sep 2012 Posts: 13 Member | | Member
Joined: Sep 2012 Posts: 13 | [quote=davidcpa]Oh wait until your Tx is over, EVERYONE will start off EVERY conversation with .... So how are you doing? I heard that literally for years post Tx. [/quote]
I can't say for sure I'm out of hot water, but I feel like this is beginning. Some of them are very sincere, and others I can tell could care less. It becomes redundant if there's no sincerity.
I just "love" it when people compare their medical stories to my own. If you've actually gone through something (i.e.- anyone on OCF), I will show nothing but empathy for you. However, I don't think your cyst compares to the baseball sized tumor that was in my mouth and tongue base. Just sayin'.
How do you guys cope with that? I'm just laughing in my head and taking it lightly for now.
Last edited by Garrett; 10-04-2012 05:29 PM.
Wrong DX since 05
Tx Since 11/10 3 KTP laser surgeries
Correct DX Sarcoma Tongue 9/11
5 cycles doxerubicin + ifex 11/11
35x IMRT 03/12
Near Total Glssctmy/Right Nck Dsct + Trach + PEG 9/7/12
Recovering Nicely.
| | | | | Joined: Nov 2012 Posts: 5 Member | | Member
Joined: Nov 2012 Posts: 5 | people who back away from you or cover their mouth when they learn you have/had Cancer; like it's contagious or something.... guess their afraid their gonna get cooties!!  just plain funny ..ignorance!! jc | | | | | 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 | ....yes, I did gain weight (soft puddings, gravies, etc.........plus my love of food) I guess. I hate it when people see me after we have been apart for some time and they say........"well aren't you looking (pause) ... HEALTHY" - with emphasis!! Based on their comments over 35% of the North American Population are very "healthy"!!
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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Ha, I had someone say they had TMJ so they could understand what I was going through...
Seriously, I have over 350 stiches in my head, and I am numb from my ears to my boobs and you get it because your jaw clicks??????
The other side is "cancer face" when they cock their head to one side and ask "how are you" is a soft voice...
Not sure which is more irritating
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Nice to see this thread back in action. Anytime you don't have a good book - either old fashioned paper on your e book,but want to read a 48 page short story collection that started three and half years ago when I was a young 62. just hit page 1 and start reading.
amazing how some things are so common and so just outright strange and others heartbreaking that people say or do the OCF community. I learned so much from you all on how callous and thoughtless comments are our daily bread. But we rise above it
My frustration made me start this thread, your participation has made it the Wikipedia of "Don't you just hate it" for oral cancer IMO .
Charm
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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Ooh oooh, I have another one...
When a complete stranger asks about your scars, prefacing with "I hope you don't mind if I ask".
Makes me want want to respond "I hope you don't mind if I ask why you didn't that hairy mole removed, or lazy eye fixed, or when you're due (when they are clearly just fat and not pregnant)" (pick your relevant response).
We could do a choose your own adventure book, except it would be a choose your own snappy comeback book!
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | During my son's treatment, although he hadn't lost that much hair, he decided to shave his head bald. Soon after as he and I were walking to my car in a large shopping area parking lot, one of his female acquaintances who had not seen him in a while and pointing to his head yelled loudly "What happened!?". And without skipping a beat, he yelled back loudly across the parking lot, "CANCER"!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | my fiend Lucy just passed a week ago Saturday (god bless her she was a fighter and had peritoneal cancer) .  anyway just to share - there was a woman at Costco one day where lucy was shopping - and she kept staring at her because she was bald due to treatment - my friend - having put up with this for some time finally turned around and said what the F___ are you staring at? Haven't you ever seen someone with cancer? She had balls!
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
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