#87677 01-09-2009 06:42 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | 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
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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?
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | 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
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | 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
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | 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)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | 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"
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | 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 !!!
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | 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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