| | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | 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
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | 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.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | 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:)
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | @ 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
| | | | | 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 | 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.
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | lol David, your wife is a gem 
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | 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"
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | @ Jerry....yeah, I considered a sledgehammer a few times 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
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | 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
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | I will assume then you are as crazy as I am
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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