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CherylR Offline OP
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LOL! Now that was the best laugh I've had all day. Sainthood under extreme duress......I like it 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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Cheryl

My RO and MO were all hot to trot on me getting a Neck dissection after Radiation and chemo, Like your husband, I just said NO and refused, Luckily for my caregiver wife, my ENT surgeon backed me up based on a clean MRI. I was dead set against a neck dissection because at least half the time, all the nodes are just fine.
Now I did end up a neck dissection the second time around since I was having so much surgery, it was a piece of cake in comparison. Even so, out of the nodes removed, they were all fine except for one necrotic one. (killed by radiation but potentially dangerous).
Good luck as I know just how terrible we men can be during this treatment. I think you are right that he needs bigger doses of pain pills if he is 6'7". Ask his doctor about a nice 75 mg Fentanyl patch. I am only 5'11' and my dosage is a 50 mg patch It really does help to have a constant level of pain medication coursing through you, I remember the ups and downs and manic behavior well. I hope the PET scan works, I found MRIs more reliable in finding cancer


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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[quote=davidcpa]
Yes my wife was a Saint to deal with me. I will be the first to say I WAS NOT A MODEL PATIENT.

I have been trying to find that Saint part of her ever since then but it must only come out under extreme duress. [/quote]

I think Lamont would disagree with you, David!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
RPCV #96350 05-29-2009 06:59 PM
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CherylR Offline OP
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Charm...I really feel like someone ought to nail my other foot to the floor because I'm just going in circles with the docs. Too many fingers in the pie I think and there's only one RN that's getting what I'm saying. Mike is terrified of surgery and he's terrified of not getting it. His anxiety and depression are out of control. At this point they will either have to premedicate him so I can get him in the hospital or I'm going to have to whack him over the head with a hammer and drag him in. Tough love of "fix it yourself" isn't working and frankly I'm worried that he's going over the edge. So unless the weekend brings an epiphany, I'll start calling docs again. I just want him to pick one course of action and stick with it. Just make a choice. He's on Ativan 2 x daily and they are switching him from Zoloft to Lexapro. The only pain pills he's taking is a lortab at night to knock himself out because he's not having any pain - except the emotional/mental pain.

David, sounds as tho you've been called out by Catherine smile

Last edited by CherylR; 05-29-2009 07:01 PM. Reason: finishing my thought

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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Tell him to do what the Drs think is best after he thinks it over, I took care of myself thru most of my treatments all but mostly my daughter being with me thru surgery. It was a rough road alone. Tell him you will let him do everything himself if he doesn't straighten out so you can relax some. He needs you and is frustrated for being helpless in an unknown.


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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No, I'll be the first to admit that she is the Understudy to St Francis, Patron Saint of Animals...... just not Husbands.

Yes, Lamont would agree but so would:
Buddy
Sandy
Buttercup
Rocky
Sadie
Marvin
Squirt
Tommy, and
Clifford

Those currently reside with us.

Then there are:
Pugh
Jay
Scout
Darma
Daisy
Bubbles
Sally
Pepper
Beige
Rufus, and
Susie

Those currently reside at her Mom's house.

And lastly Annie who resides at my office and is the mother to Sally and Pepper.

Now do you see why I object to ANY new animal?


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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I must have been mean and nasty like everyone elase, but I sure don't remember doing anything mean to anyone. The best part is I can't get anyoe to te me what I did to be mean. I have been told about seeing pink elephants out of my hospital window LOL That isn't mean, that is seeing things,LOL I hate living with things noone can explain or relate to me that I supposedly did when in LaLa Land.


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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"OCF across the pond"
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Just remembering something about Lala land.
Martin After his operation kept asking me where he wsa supposed to put the book. He was lying in the hospital bed then. Where the books arranged by alphabetical order? What book? Where?
The morphine also made him see a bodyless hand, the hand kept coming to pinch the staples in his neck while he wasn't looking. It lived underneath the curtain. It was funny, but not for him, he was terrified of the hand and asked to be given less morphine.


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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Bubbles?


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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Bubbles is a cat.

When we first opened our restaurant I built a laundromat next door which we called Charlie Bubbles. My wife found two sibling kittens in the laundromat, one male and one female, which she named Charlie and Bubbles. Charlie died several years later with cancer and Bubbles is still with us. When the laundromat equipment needed replacing 7 years after opening, I changed the laundromat into a Cigar Bar which complements our Cuban restaurant much more.


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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