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#111229 01-29-2010 07:50 PM
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CherylR Offline OP
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and you will find a picture of my husband. What a hard head! I haven't posted much for about 6 months as we have just been locked into a standoff. He needs his esophagus stretched....radiation, the gift that keeps on giving, right...and he was convinced he was having a recurrence and was refusing treatment. In the meantime I've had surgery on my foot and thumb. Finally, finally, he goes to the surgeon today who explains that he needs the esophagus stretched due to radiation......sigh...just like he did last time. So now he's going to have it done. No sign of cancer, a few blood tests and he will schedule it. Sometimes you just want to beat your head on a wall......


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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Ah Cheryl, I know exactly how you feel. Steve and I still but heads every now and then about things. For some reason if things come from me they just don't have the same impact as if they come from the doctor or his dietician. So if you looked up stubborn, frustrating and a pain in the butt in the dictionary then I'm pretty sure you'd find Steve's picture. Luckily for him I still love him lol.

Hope all goes ok with the stretching. Doesn't sound very nice. And hope you thumb and foot are feeling better now.

Good news though that no sign of cancer. Take care and good to see you back on here x

Wendy


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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I'm afraid I'm the same as your men. When Ray tells me something I listen sometimes...if my doctor says it then I really listen. Not sure why because Ray is usually right:)


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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CherylR Offline OP
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@ Wendy....thumb has been fine...foot still limping...hooray that there's no sign of cancer! @ Suzanne - the doctor told him this 6 months ago but he's just a hard head.
I guess the part that really irks me is that H has been constantly losing weight during his stubborn fit, can't swallow much of anything, and has to sleep upright. Fiddled around with this until he's made himself so much worse than he had to be. It was hard to come back here and post much except to encourage some since I couldn't even motivate my own H! There are such a bunch of fighters on here that I am sooo soooo proud of. But I certainly identify with the frustration of those who have to push, pull, drag and butt heads with their patients!! Obviously, I have farmed myself silly on FB to keep from fighting with him LOL!


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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My wife isn't stubborn she just doesn't listen to me unless I happen to agree with her which isn't often.


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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lol David, your wife is a gem smile


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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Posts: 2,219
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Men...can't live with them, can't live without them. At least you didn't have to resort to a sledge hammer. Oooops, was I really talking about women?


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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CherylR Offline OP
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@ Jerry....yeah, I considered a sledgehammer a few times smile so now he's upped the name from obstinate to pig headed ass (see, using my farming words) as he went out and shoveled all the snow today....the man has dropped close to 70# and has the stamina of a gnat. Would not allow me to help at all. Men!!!!


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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personally, i think the search would result in a picture of andy...im just saying! i call him my bad patient and the fact that he is a stubborn new yorker would surely put a pic of him at the top of the list!


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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CherylR Offline OP
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I will assume then you are as crazy as I am smile


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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I know I fought my wife every step of the way, from refusing to get Dx'ed and all through Tx. I remember one instance where I was badly in need of a hospital stay and I was refusing to go because I wanted to watch a college FB game on TV that afternoon and I was afraid I would either miss it or even worse be put in a semi private room with someone already watching Judge Judy so my wife finally having enough of my butt looked at me and said "ALL RIGHT THEN JUST LIE THERE AND DIE!!!" and with that she walked out of the room. A few seconds later I relented. I remember one doctor telling my wife that I was 24 hours from my kidneys shutting down...OK so she got lucky.


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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CherylR Offline OP
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Your wife is a saint!!! I've read some of your stories on here! LOL I've tried that tact and have been unsuccessful. If I argue with him, he just gets worse, and if I don't say anything then he just does what he wants which is nothing. Frankly there are days I could just get in the car and drive (south since I'm sick of the snow - 12" a couple days ago and now anywhere from 4-9 this week). I'm considering life as a beach bum because I've just about had it. Even used the ole line "if I said that to you, how would you feel??" But that's different. Personally, I think his thyroid is totally screwed up - mood changes, depression, cold, etc. then fine for awhile and then back to the Dr. Jekyll and Mr. Hyde routine. His last TSH was in September and was .46 and he's due now for a TSH, T3 and T4. We'll see.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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try taking the good batteries out of the remote and replacing them with dead ones. "no honey, we dont have any batteries but if u get up and go, i will stop by the store and get some". sometimes we have to resort to mean and nasty tactics, but its all for their own good wink


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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Posts: 8,311
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Whoooooa, that's hitting way below the belt and I thought my wife was cruel and unusual!!


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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id like to think of it more as creative caretaking grin


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: Sep 2006
Posts: 8,311
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Yeah and I'm sure Hannibal Lecter came up with some catchy phases to describe his trade!!


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: Nov 2009
Posts: 396
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u guys and ur remote...priceless!


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: Sep 2006
Posts: 8,311
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Excuse me, my wife has a sign on her desk that reads, "The one with the most shoes when she dies WINS" and believe me she has to be a front runner in that race.


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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shoes...where...i want some! yeah its pretty dangerous to get in my way when there is a shoe sale wink


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: Jan 2009
Posts: 216
CherylR Offline OP
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A quick update on my pig headed h...he had the esophageal dilation today...doing well after a few breathing problems due to the anesthetic. Only one small stricture which was easily cleared. No sign of cancer in view during procedure! Now to set an appt with an endocrinologist...surgeon says do it, too much stuff going on that needs checked. Guess I have to quit calling him pig headed now....at least for awhile smile


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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klo Offline
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My goodness. I am in a normal relationship! Substitute the word Alex for husband, Steve, Jerry or Andy in any of these posts and it is him. Alex owns the word procrastinator smile


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #118101 06-17-2010 05:10 AM
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Well then I own the word stubborn!


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: Jul 2009
Posts: 453
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lol David you men drive us women crazy. I think Steve has a share in the word stubborn with you David. In fact I think he actually invented it. He would have to be the most stubborn man I have ever, ever met. Luckily for him I love him.

Yes Karen, I do see many similarities between Alex and Steve. Got to feel sorry for you there because I know what you are up against. Steve's treatment was extremely hard work, for both of us, but so worth it when we got to the end. I think most of Steve's issue was he had no control. So he tried to control the little things like eating and doing his oral care etc. Didn't matter how much it would hurt him in the end, I think in some way just by being able to say no I don't want to, it helped him to feel better about the whole situation. Who knows. All I can say Men, I'll never figure them out.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: May 2010
Posts: 638
klo Offline
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and I will take ownership of "bully". I also have the advantage of a high balcony that I can threaten Alex with when the master procastinator has had his head in the sand long enough.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #118548 06-25-2010 08:02 PM
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i agree with u there Wendy....MEN--gotta love em....


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: Sep 2006
Posts: 8,311
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Well I'm married, 20 yrs, to the most stubborn, pig headed female in the world. She's Cuban born and I think it's genetically instilled in them to be the leader of the family. It' funny though as she will often complain about how stubborn her mother is and how frustrating it is to talk to her and I just laugh.

She always tells me "please talk to Mima, you are the only one she will listen to" and I quietly think to myself, why can't you follow that advice!


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: Nov 2006
Posts: 2,671
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Sons can be obstinate, too! I don't know if it has to do wih being a computer programmer with answers to everything else or what, but after much "Mom, I'm an adult now", and lots of obstinate refusals, the thing that turned the tide for us was when I printed out lots of concerned, experienced, compassionate postings from OCF people and just laid them by his bed while he was sleeping. The next day he was a whole lot more receptive.


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.)



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