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Hi Laurie, so sorry to hear of your situation. Don't really know what to say but wanted to let you you know that others have been in the same situation. Can't agree more with the other people that responded suggesting seeking Al-Anon or some other support group. I think my biggest advice would be to try to seperate the two issues, the one being caring for someone that is battling cancer and the other living with and caring for an alcoholic. If his drinking was a problem before finding out about cancer, his drinking after treatment is still a problem that should probably be dealt with. Even if alcohol is not attributing to his problems with cancer, it is still contributing to other health issues that may not have appeared yet. I will get off my soapbox and send whatever strength I can your way.


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
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Believe,

It is extremely frustrating and saddening to be in your situation, but I do see some bit of hope...your husband did stop drinking during treatment and while in recovery, as you mentioned. To me that indicates that there is still an ounce of willingness on his part to stop drinking when he should, although I understand that the circumstances were very different during that period when he did stop drinking. So perhaps a lot more reinforcement on him about the fact that alcohol was a big factor leading to his cancer could help (I know, easier said than done).

I was a non-smoker. And like your husband, I didn't drink everyday but was a heavy drinker during occassions when I did (as my colleagues and friends could attest)...and I also took / preferred hard liquor over beer: vodka, whisky, tequila, gin, rhum. When I realized that 1 of 2 major reasons for causing my cancer is NOT what I had or did, then it must be the other reason. I haven't had a drop of alcohol since my Dx nine months ago.

I also agree with the advice to get outside help for yourself.

Good luck, wishing you success in this new challeng you're facing.

Jojo


Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09
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Jojo,

Where was your primary?


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,

Mobile tongue. Started on left side, tumor grew inwards toward the middle part in less than 3 months (my estimate, from the time that it started out as what I thought was a small, insignificant, normal and easily-cureable blister). About 90% of my tongue was removed, replaced with a flap permanently anchored to the floor of my mouth.

Jojo


Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09
Joined: Mar 2009
Posts: 13
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Thank you all for your responses. I feel like I could just scream. Tomorrow is the sixth anniversary of my Dad's passing from SCC Stage III, total glossectomy. My Dad is gone, my husband saw it happen, lived it himself and still wants to drink. UGH. Death wish? I don't know. I'll get myself to a meeting. Thank you for your support. Warmly, Laurie


Caregiver to SURVIVOR George; Stage IV SCC no primary; HPV positive;
heavy drinker, moderate smoker; discovered in lymph nodes - surgically removed; dx March '10; PEG tube; 3 bolus cisplatin; 35 radiation treatments completed May 22,2009; Kickass support system
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Hi, Laurie. Maybe reading him Liz's (cookie) signature line will put a bit of fear in him. Though I must admit I still like a drink of tequila after work, drinking enough to "tie one on" is not a good thing for anyone. Sorry Liz, but if Robin's story can make Laurie's husband just stop and think for a second, well, that's something.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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David
dont ever be sorry for holding Robin up as an example of what not to do,and if his story scares the bejesus out of anyone who thinks its ok to smoke and drink after a diagnosis of Oral Cancer then all well and good.I have said a hundred times that the whole reason for staying on these boards is to give some point to Robs death.Hopefully our experience will help others fighting the same demons,and my experiences will benfit other carers riding the same bus.

Last edited by Cookey; 11-24-2009 11:14 PM.

Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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There was another poster whose husband was dying and she posted some very moving comments about how he tried to smoke even when the filter would get saturated with blood as soon as he put the cigarette into his mouth. I printed that blog out and gave it to my smoking employees but now I can't find it.


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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Sounds like Riches plea i think David of course i may be wrong and you will of course correct me(you know how much i like correction) xx


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Yes that's the one. Julie, Rich's wife, wrote this in Nov 29, 2007. One of, if not THE most powerful posts I ever read.

Rich asked me to write this and get as many people to read it as possible. I know here I'm probably preaching to the choir but here it is anyway.
My husband is 60 years old and is dying of oral cancer. We have been married for 27 years. I`m 46 years old and have been smoking since I was 14 years old.
Let me tell you about that long miserable death you may be facing if you cont. to smoke. My husband is slowly going though it right now. He has oral cancer. The treatment recommended involved a 12 hour operation to remove most of his tongue and the lymph nodes in his neck. They would have taken a flap of muscle from his arm to rebuilt his tongue and neck. After the surgery they wanted to do radiation every weekday for 6 weeks plus chemo. He would have had a tube to breathe though and be fed though a tube. All of this would have given him a 20 percent chance of surviving for 5 years. This would have dropped to less than 5 if he cont. to smoke.
However due to other damage from his 45 year habit this is out of the question. When he went to a cardiologist to get clearance for the surgery he found out due to smoking he would need heart bypass surgery first to even be considered a candidate for the surgery for the cancer. He decided not to do it.
So now he is receiving hospice care. The cancer in his mouth is growing. He has difficulty talking, eating and is on major painkillers than don`t always work. He can`t close his mouth and is constantly drooling. I could go on but I think you get the idea.
This is what convinced me to quit. Smoking is not worth it!
Update on Rich. 9/4
We have been told the end is near. 2 hours to 2 weeks. possibly by bleeding to death. The cancer had broken though a vein once and will soon break though an artery. If that happens it won`t stop.
update on Rich 10/7
Its over a month since the doc said 2 hours to 2 weeks. He has had 4 more episodes of profuse bleeding. The tumor in his mouth is now breaking through the skin on the bottom on his chin.
Update on Rich 11/15
His face is horribly disfigured now. The tumor under his chin is protuding about 3 inchs and is about 4 inchs around. It has a few open areas that seep blood. The whole thing is scabbed over and black in color. He also has a large tumor on the lymph node on his neck. This is by his carotid artery. This is the one they say may be causing the personality change by blocking the bloodflow to his brain. This horrible disease is turning him into someone I don`t know.
Update on Rich 11/21
Yesterday everytime he attempted to swallow he bleed a little. Got his pain meds switched to a patch. He is unable to eat or drink at this point, Then he woke up from a nap bleeding profusely. Had to pack his mouth with surigel. He really isn`t himself anymore and is verbally abusive. At least with his mouth packed he was unable to talk. (gotta laugh whenever possible )
Update on Rich 11/26
The tumor on his neck bleeds profusely each time the bandage is changed. He is alert and aware and very scared when this happens. I can usually get it under control pretty rapidly but sometimes its not so rapid. Yesterday he insisted I get the hospice nurse to do it cuz I just didn`t know what I was doing. The on call hospice nurse came , it bled profusely she passed out and I had to get it under control. He told me how much he loved and appreciated me then:) He has not smoked since the 21st. He attempted to smoke that day with blood pouring out of his mouth, he couldn`t do it and i guess looking at the bloody cig finally turned off the desire.
Update 11/29
His mouth is just one big sore now, He is unable to even take the Roxanol for the pain. This is morphine that you just put in your mouth and it is absorbed. No need to swallow but not meant to be put on an open sore.His pain level is `between an 8 and a 9` Since he remains at home they do not provide shots. We are waiting on morphine gel athat is given by rubbing it into the wrist. He is only taking sips of fluids and eating ice cream for the last few days. Since we got a humidifier he hasn`t bled when he swallowed.

Her post went on for 6 more pages but by early Dec Rich was "sleeping" 20 hours a day and he passed away Jan 4th, 2008.







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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