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Kathy and her dad started coming to our restaurant almost since the day we opened 15 years ago. Every Friday night they sat at the same table at the same time. Kathy got married while coming to the restaurant so then there were 3 at the table. Kathy, one year older than I, was told she had Stage IV SCC 2 months before I was Dx'ed so we shared stories of our Tx and recovery. When I was really bad off I remember seeing Kathy sitting at her table eating Pork, her favorite, and saying to myself "how can she do THAT?". She had had the RND and you couldn't tell she had ever been sick or operated on. Shortly after her Tx was over Kathy's dad had his 97th Birthday at the restaurant and shortly thereafter he passed away. Kathy and hubby still came but she confessed to me one day about a year ago that she had started consuming a few alcoholic beverages a week and that had led to her starting to smoke again.

Kathy won't be coming to the restaurant anymore as she passed away this week from this horrible cancer.

In my time on this site I have never known anyone who continued to smoke post Tx not die from a recurrence. I'm sure there are some but please do whatever it takes but NEVER SMOKE AGAIN as it is almost sure death.


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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David,

My sister and family live next door to us. We have been very close since our boys were born within months 30 years ago. I moved here from Texas to help her take care of my Mom. She is a closet smoker, at least around us...I never see her but I smell it in her car and garage.

She went thru the trauma of Bill's DX and treatment almost as intimately as I did. Also, a very close friend of hers is dying of lung cancer after years of chain smoking. Neither of these events have caused her to quit. I DON'T GET IT!

I told her once several years ago that I knew she smoked and I was worried about her and that I count not stand by and not say something...so I said it and then told her I would never lecture her again...that I knew it was her battle to fight.

I have not said anything since. It's hard and senseless and incomprehensible from a non-smoker's viewpoint. I love her and I am scared for her.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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David

Sorry to hear about yuor friend Kathy. Such a shame.

Hows your neighbor doing?

There are alot of OC patients located in your area. Seems like there are alot around me too. I know of 6 people with OC all within 45 minutes from me. I know 45 minutes drive seems like a long way, but it takes me 15 min. just to get out of the woods.

Wouldnt it be nice to never meet another OC patient?


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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I guess it's like buying a new car and suddenly you see them everywhere.

My wife's BIG 50 BD is next weekend and she always goes all out for her parties and my neighbor always helps me man the grills so I'll get to spend some quality time with him. If he's still smoking he'll have to lite up since he'll be next to me for hours. Believe me I'll work Kathy's story into our conversations one way or the other.


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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David,

I'm sorry to hear about Kathy's passing. My RO asked me to never smoke(I was never a smoker) and drink again. He told me I could do what I want but that he never had an OC patient survive that continued those practices. We all know about smoking and the consequences; however, I do believe he was talking about heavy drinkers as opposed to the casual drink. It's a shame that she picked up smoking again...Never being an addict to anything...it's hard for me to relate for that feeling of needing something(pick your poison).

Cancer is all around us and it's very sad.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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So sorry for your loss David. So sorry that she started smoking again. My ENT asked me the first time around at every appointment if I was still not smoking and I told her that I thought it would be very stupid for me to start again. She told be that she would never ask me again and she hasn't, but I made sure that I told her when I had my recurrence that I had not started smoking again. This was just bad luck. She told me once that not smoking again was the key to not getting the cancer back again.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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Sorry to hear about her passing. You will no doubt look to that spot on Friday nights and remember her fondly.

We all know how wonderful having support to deal with cancer is, and I can recommend a stop smoking website - free - www.quitnet.com. You may want to pass that along to anyone who is thinking about quitting. 24/7 support from others going through exactly what you are going through is a huge help.

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)
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Davis,

So sorry to hear about Kathy's passing. Going through this with one of my partner's in our practice (my best friend for 42 years) and my assistant (for 25 years) I know exactly how you feel.

Somedays, I just want to stay in bed and not face the reality of it all.

Wish your lovely wife a happy birthday from me.

Jerry


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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Dave, sorry for your loss, my wife has an Uncle that was treated for OC and he is right back to smoking 2 packs a day and drinks a 12 pack a day, they just dont learn.. Tell your wife Happy Birthday and enjoy each day with her!!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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I don't know hardly anyone who smokes and I can't recall any relatives who smoke(but then I am not from a big family). I know people who smoked many years ago - high school, college, etc.. (as did I).

I do have one neighbor who chain smokes and perhaps he makes up for all the others that don't, but he is pretty old (pushing eighty) and seems rather healthy.

I don't personally know anyone whose death was attributed to smoking but, I guess, that is to be expected since I know so very few smokers.

I have met a few OC survivors at local support group meetings, but I haven't asked any of them if they were smokers. If they currently still are I am sure I would smell it. I guess the ones the keep smoking probably don't come to support group meetings.

I have asked all my doctors about social drinking; a beer, glass of wine... and they have all said it is fine.

I swore off those Listerine cocktails when I was 13 or so.




Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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David:

I too would like to chime in and pay my respects. I am so sorry you have lost a friend. We can never understand what goes through someone's mind. I too have been tempted and it really is not easy. Everyone around me smokes and this makes the demon even harder to fight. Am still standing firm sometimes with one hand hanging on but come back. The addictions we face can sometime surpass our will and this makes no sense at any given time. The loss is great. I am sure you will remember your times with fondness and smile when you remember how she touched your life.


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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My best buddy is about my age (early 40's). He has been a smoker for the 20 years I've known him and well before that. His dad died several years ago from H/N cancer believed to be from a lifetime of smoking. I really thought that would be the trigger to make him stop smoking himself, but it didn't.

Then when I was diagnosed, not even having been a smoker, I thought that would be the trigger. It wasn't. Even after he has seen the hell I've been through with the treatments and the surgeries, he doesn't even seem interested in trying to quit. I keep telling him, bud, you don't want to do this. It's not too late...you can quit and get your body on the path to recovery. But the pull is too strong and he doesn't seem to have the will to fight it.

I've never been a smoker so I can't imagine, but I've seen how incredibly strong the addition can be, even in the face of events which would seem to put a lot of fear into a person.
-Steve


Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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David,

Sorry to hear about your friend Kathy. The addiction to nicotine is just too strong for some to overcome. My husband has smoked since he was 17 years old...quit for about a year in his early 30's, and is now 54 years old. He smokes 1/2 pack a day, mostly in his car and at work, not at home. My sister lived with us, along with her husband during the radiation and chemo, for 8 months he saw up front what she had to go thru, and he still chooses to smoke. My sister was a health nut, ran marathons and was a vegan, only ate organic, never smoked and she died. His dad died from leukemia at the age of 58, never smoked. His best friend died from melanoma at the age of 56, just 3 years ago, smoked a pipe occasionally, but enjoyed his beer and fishing. On the other hand his uncle died at 75 years old (lung cancer), my dad died at 75 (COPD), and my brother in law's mother died at 75 (lung cancer)all were smokers.

I get on his case about smoking every now and then, but if you look at what we have experienced...all I can say is, what life hands you doesn't make sense at times. Go figure...

Hope your wife has a wonderful 50th...it's a milestone and a time to reflect back and appreciate what we have and have been thru.

Best to you,

Nancy


Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
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I am about to hit my 1 year anniversary post surgery. I am concerned about recurrence so am doing some reading on the forum. I know this post is several years old but just have to comment. I totally understand the smoking thing. I quit 4 years before my DX. Thought I would never suffer from my 20 year habit. Doctors won't say my smoking caused my cancer...but I believe it did. But even that does not stop the desire to smoke for me. My hubby still smokes....he has tried to stop but hasn't conquered the monster. I vape now instead of smoke....but only in the evenings after work. The smoking demon is a tough adversary. I hate to say that....but even after the hell I have been through...there is not a day that goes by that I don't want it.....just being real.



48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
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David �
I�m so sorry to hear of your friend Kathy�s passing. For a non-smoker, it is so difficult to understand this addiction to smoking. I lost a very dear friend (an RN) a few years ago and I still remember the anguish in her voice as she tried to convey how impossible it was to quit an addiction. She had counseled many drug addicts as well as survivors of pedophile abuse in her practice, and once when I confided to her that the son of a friend of mine was addicted to drugs, she told me that an addict will do anything at all to keep the habit going � anything. She died in her 60�s and the loss of my friend is still felt by all who knew her. In my mother�s family of 6 siblings all but one smoked. The non-smoker lived well into his 90�s. My mother and the rest all died in their 60�s and 70�s. So it does shave a few years off one�s life.

And now, my older son, a smoker � says he is trying to quit �some day�. We�ve reached the point, where I try not to mention it anymore because the last time I did, it did not go very well. But I will give him the www.quitnet.com url for him to consider. Thank you for the link, Donna � you�ve given me a little ray of hope.

David � please wish your beautiful wife the happiest birthday ever!! Fifty is Nifty!! (I know, I�ve been there!) Hope the birthday celebration goes just great in every way!


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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I can't let this topic go by without a comment. Please be compassionate about smokers. I gave up smoking at 37 after having smoked since starting at university at 18, when, as I recall, in those days the non-smoker was the odd one out. I had managed to give up 4 times for about 12 months a piece, over an 19 year period, but always "fell off the wagon", usually because it was so long since I'd had a cigrette I thought I'd be safe just having one - famous last words! The only reason I finally (hopefully) gave up was I was in the middle of an attempt to quit when I met my husband who absolutely detested smoking. I knew that if I took it up again that would be the end of the relationship.

It is a most insidious drug. In fact, just the other day I (half)joked to someone that if I heard there was a comet heading towards earth, the very first thing I would do would be to buy a carton of cigarettes !!

Years ago my sister lost her dearest friend to lung cancer at 42, and I remember how shocked my sister and her husband were each time they visited this woman in hospital - even at this time she was struggling outside the hospital building to have a cigarette and was smoking like a chimney (this was at a time when you could smoke outside hospital buildings so I suppose that's what she was doing).

Nicoteine has a vice-like grip and I feel so sorry for anyone who has a HNC diagnosis and still can't quit.



Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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I'm with you there Sam. Its very difficult to quit. You know you should, you know all the reasons and the dangers, but there always seems to be plenty of time. I'll quit next year. Or I'll quit by 40. or 50. Or some other deal you make with yourself.

Never again. Not one, not ever. Thats how it has to be.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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I'm of the belief that forcing the stress of quitting during treatment can be as deadly as the cancer or treatment. With elderly and terminally I'll, I don't believe it should ever be discussed. Studies have shown if you smoke for over 10 years and quit, the cardiovascular system improves with in weeks/months but the risk of cancer never goes down.

If one can quit smoking to save a relationship, it should follow that one should quit smoking to save their life.

The tobacco companies should have to pay all medical bills of those who smoke or those who are around second or third hand smoke, but they are allowed to just keep on killing folks. It makes no sense.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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From what I've seen and experienced, saving a relationship is not always reason enough to combat the strong hold of the addiction. I'm all for getting the tobacco companies to pay all medical bills and I would be happy to donate to a cause that gets them to do that. In the meantime, maybe there is hope for the newest generation and for all those who spread awareness about the dangers of tobacco addiction. It does seem that there are less smokers around, than there were years ago when it was considered "cool" to be a smoker. With OCF and Rodeo Cowboy Cody Kaiser, we are on the way to making it "cool" NOT to use tobacco products of any kind. "Be Smart, Don't Start". I also like the advice to young girls: "Don't Drink, Don't Smoke, Don't Chew and don't date boys that do."


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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