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Don't want you to think I ignoring you but I can't help you there but I'm sure someone here knows.


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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Hi David no worries about thinking you are ignoring me you all have a life and are busy and I didn't give it a second thought I was just putting it out there for anyone who could help me it's the termonology that is getting me...like "squamous cell carcinoma" and " mandible" I am having trouble understanding terminology for sure. I talked to my husband's home nurse today (he is diabetic and has sores that will not heal on his toes)and she was commenting on how proceedures in the united states are so much more advanced than here in Canada. I hope this doesn't lower my chances at survival. Anyway I am just plugging along and concentrating on finding info out and not smoking what a curse. Any input will be digested and sorted out and hopefully have positive impact on me. After talking with nurse I again don't wanna wait but I don't want it to happen either. My husband said if I was so upset over this just not to have it done but I don't feel this is an option...see I am so all over the map...just can't seem to stay in one direction. I have read emails, posts, blogs and all point to one very very very scary operation with lots of side effects and possibilities the only common factor is the people are alive to talk about it!!! I really am hating this waiting game and think I will call Monday to see if anything has been set up..I know I have had this monster for at least 8 months and I am afraid if I go much longer it will travel too far...I don't know how much difference four weeks is gonna do...

Still up in the air Actually not a bad view from here :)) just spooky

Dianne



Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Dianne,

if you consider not doing anything there is only one way this will end. You are not talking about elective procedures here. At the same time do not go nuts with all kinds of scenarios that may or may not happen. Continuing to smoke will drastically lower you chance of survival, if that is a concern. This is a powerful experience to kick the habit once and for all. This I know first hand.
Once you have a battle plan things should settle down.

Best

M









Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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Hi Markus I am truly sorry if I mislead you I know it is not an elective surgery but all I guess I was trying to express is that like everyone else I don't want to do it but I do most emphatically do know where it will lead. I am also going back and forth wanting the surgery quicker and back to thinking waiting for it will be fine too. I think I was just relating that although he is a big support he is thinking of me cause right now it is not visible my illness outwardly. And he is my main support and he has told me up front that should the tables be turned he would not have surgery and let things take their course. In his mind if it is too hard don't do it. This leaves me having to be careful of what I say in terms of not wanting to do this. When I am sure that this is what I want he is behind me one hundred and fifty percent. Unfortunately, I have period of weaknesses where I just try to wish it away or deny it. On the other hand there is my daughter and she has stated firmly that if this is what it takes to keep me here then there is no choice in her mind. God bless her!! There are so many arrangements to make and set up and I am working on my game plan every day something pops in my mind and I have decided to start a book to document everything I want to know as I am reading and learning. Presently on all kinds of little papers all around my computer ...this weekend my goal is to get a bit organized in that matter gather all the little pieces and put them together in question form. I have got some really great ideas and information from some connections made on this site and I am very grateful...but I still need know if there is Canadian link to this site as proceedures may be a bit different here. What concerned me a little was that my pharmacist has had no experience dealing with this surgery but is more than willing to work with me in every way he can and I am sure doing his own research as well.
Thanks again
Dianne
PS Day three smoke free


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Dianne, I smoked for at least 50 years and have not touched a cigarette for over 5 months or since I had surgery for implants the end of Feb. If I can do it, I'm sure you can walk away from them too. I even smell better . LOL and so does my house.


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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Thanks for the encouragement it is a hard battle I myself 35 years of smoking (MY GOD am I that old already)LOL

Everyone around me is very supportive as well. Unfortunately everyone else in the house smokes. They all smoke outside now. Hardest thing for me is socializing and now everyone goes outside to smoke and then sit out and socialize and me have to be anti social. No longer the social butterfly...that's ok I spend most of my time trying learn and organize. one of them is hell bent on quitting with me. He is supported by his work they are going to pay him to go to the dr to get perscription ...pay for zyban and give him a bonus when he quits...talk about spoiled...and me I am resorting to the patch a lot of people don't believe in it say to go cold turkey but with everything going on stress levels I don't wanna take any chances!!!

BTW are there any other diabetics out there insulin dependant who
have gone through this battle? Not sure how this is going to be incorporated into the recovery

Dianne


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Dianne - Congrats on quitting smoking, even it is for just a few days - I hope you can keep it up. I quit smoking 13 years ago - and still got oral cancer. Anyway - I help give back by advocacy - I am chairperson of the GREAT AMERICAN SMOKE OUT at my work. I tell my students, I still have part of my tongue because I still have something important to say. I show them my scar and urge them to quit (or never start ... thats the key!)CMB


Partial Glossectomy (Right) March 2007, Clear Margins, SCC T1N0M0
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Wow that sounds like a wonderful way to look at your situation cause you have something important to say...That definately hits home for me!!! I hope many do listen!!! Both my children smoke and I tried to stop it but was unsuccessful. My son is now wants to quit cause he doesn't want cancer. I will help him in any way I can. He is still young although it is never easy to quit. My daughter right now needs it but I have a funty feeling that once my treatments start she may change her mind.

Keep up the great work!!!


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Dianne:

You can do it!!!!! If you have your mind made up to quit then you will. It sure isnt an easy thing to do especially if you are surrounded by smokers. Its a matter of changing your whole routine.

I was a smoker too and quit last year cold turkey. I figured that its either going to be the cigarettes or me and Im not ready to die yet. I wasnt able to quit immediately when I was first diagnosed in June, but I did quit about a month after. It took me a while to get over the initial shock of having cancer to be able to think clearly about quitting. I will never smoke again, my children do not smoke but all my work friends do.

Have faith, you can do this smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Congratulations on quitting!!! I have my mind set I do miss it and it smells sweet but hey only three days old as a non smoker

Thanks for your support

Dianne


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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