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#167184 06-27-2013 11:06 PM
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Hi everyone! I Hope everyone is good. Sorry I try not to visit here to often as I feel it fuels my anxiety to much if that makes any sense. But I think as time goes by I will start coming back more and more. I have already read some really helpful information about HPV! I've been doing really well. All clear still and almost been 1 year since dx and 10 months since completion of treatment. Back at work full time and busy looking after my three gorgeous babies xx l
I Just wanted to get some opinions on drinking alcohol. I Have not even had one glass of wine in over a year but wanted to know what others have been doing post radio therapy. My cancer was stage 1 and HPV positive but cancer nonetheless so anything that may increase chances of it returning Im happy to not drink but it'd be nice to go out once in a while and be normal and not have to think about cancer or the guilt I would feel after a few wines. I'm sorry if this seems trivial and certainly not a high priority. Wishing everyone lots of positive wishes xxx


Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
ShellAustralia1978 #167186 06-28-2013 02:45 AM
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Hi Shell - It's great to hear how well you are doing! And I'm sure you will be hearing from others on the wine drinking issue. There have been lots of discussions on the subject so don't feel like it's a trivial question. Until someone else does get to you, you could just type in "alcohol" in the search box (upper right of this page), click on "go" and you will see many responses to the question. There is also another search box on the main pages of OCF (way upper right) which also gives information on alcohol use. Enjoy your successful recovery and your three gorgeous babies!


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.)



ShellAustralia1978 #167188 06-28-2013 03:23 AM
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Hi Shell, great to hear you are progressing so well. As Anne-Marie says ther has been plenty of discussion and different thoughts about drinking. To me it is not a trivial point at all, as alcohol is an important part of my life!

My RO's advice was to avoid spirits, and she recommended only moderate drinking with beer or cidre being preferable to wine. My experience has been to date (18mths post tx) that spirits are a no-no as far too strong to tolerate even a taste (a great shame as I was very fond of malt whiskeies, I make do with smelling them only now!) though I recently tried a small gin with lots of tonic with success. Wine still tastes foul so is no longer part of my life. But luckily for me hoppy beer taste even better than previously. So I now drink a beer or two probably every other day, but I never over do it, I go for quality not quantity. My attitude is that it is one of the few real taste pleasures I have now (due to still having eating problems) and it is also a source of extra calories. It is also an important part of me getting back to a more normal life again and socialising, and has given me a new hobby of seeking out new tasty beers. Sally



Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
ShellAustralia1978 #167190 06-28-2013 04:52 AM
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Amen Saxicola! This stupid disease took pecan pie away from me and I won't take that sitting down!! I was not a dark beer fan before Dx but they are delicious now. However, I would no more drink 6 in a sitting than I would eat an entire pie back in the day.

If there are no overriding medical concerns to me it's almost a philosophical question. Now that I know what feeling bad feels like, I try to do things that make me feel good. At my age with my history I can't imagine how bad a hangover would feel. So I never over indulge. What does make me feel good is a good run or bike ride, a tough workout at the gym with one of my boys, and a plate of Tex-Mex with an ice cold Negro Modelo. In everything, moderation.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
ShellAustralia1978 #167191 06-28-2013 04:54 AM
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HPV HNC is totally different than smoking related cancer. HPV cancer is caused by a virus, unlike smoking related cancer, which involves the breakdown of cells to the eliptical lining of the mucosa from exposure to carcinogens, like tobacco and alcohol. Even with tobacco related, they say for alcohol to have an influence it's by High consumption, like 4-5 drinks a day, 16-20 a week. As mentioned , the type of alcohol matters too, like spririts, wine, and then beer, which don't equal the same alcohol ounce for ounce.

Even though they say in high consumption, I'm always mindful what alcohol can do to the kidneys, since mine are poor now, and if it may lower the immure system in high consumption, which may have an effect on other illnesses, cancer, but I'm not worried about an occassional drink now and then. I don't drink much anymore, I have no taste for it, and probably the first time I tried was 2 years post treatment. No hard liquor for me, wine is too bitter, and drink certain beers, maybe a glass every month or so, and sometimes it's mixed with tomato juice, spices, and can make three drinks from 12 ounces lol.

There was a discussion about this 8 months ago, after all the magazines posted an article about the study showing even moderate consumption of alcohol can increase your risk of any type cancer, and the study was linked there, and is on OCF news feed.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






ShellAustralia1978 #167198 06-28-2013 06:19 AM
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Pre Dx I drank a beer every night before dinner. Had to have my BEER!. Post Tx it was months and months and months before I even thought of beer but my RO said it was OK to have a beer so around the end of my first year post Tx I finally tried one and it actually tasted the same so most nights I will have MY BEER. I have discovered that 3 is my limit at parties and whatnot. Anything more that that and I'm drunk! I also continue to exercise regularly. Currently I do 5 spin classes at the Y complimented by various resistance machines and ride my bike 20 to 40 miles a week. My blood work is A+. My only problem is I can't stop that aging thing!

Do check with your docs as everyone's situation can dictate different responses.


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.
ShellAustralia1978 #167201 06-28-2013 06:54 AM
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Shall, Im glad to see you stop by. So happy you are doing well!

I am one who avoids all alcohol. I wasnt much of a drinker prior to having oral cancer. I would drink only on a very rare occasion, like one drink every couple years.

After OC I have tried a sip of a pina colada which tasted very good. The rum was hidden so it didnt burn my mouth. I think there was only a tiny bit of rum in that drink anyway. A couple weeks ago I took a sip of wine and it tasted horrible to me. It was like drinking vinegar that burned my mouth and throat.

I attended a presentation given by a highly respected doctor who not only practices but also teaches at NYU. He stated alcohol consumption even as low as 2 or 3 drinks per day a few times per week may be considered a risk factor when it comes to OC patients. He did not differentiate between HPV+ and OC caused by other things like tobacco. All of my doctors have varied between avoid it completely to once in a while one is ok.

Personally, I cant take the risk of even an occasional drink if it means it could help bring a recurrence. Ive been thru OC 3 times already, I would not survive a 4th round. I doubt the 2 sips of alcohol Ive taken in 6 years will play a part in changing anything. Drinking is just something I dont want to look back and regret doing like I do smoking.

Check with your doc and remember all things in moderation are usually ok. Bottom line, its up to you.


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
ShellAustralia1978 #167202 06-28-2013 07:34 AM
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Hi Shell,

I have struggled a lot with this dilemma as well! My doctor told me that since alcohol wasn't what caused my cancer in the first place, it was ok to drink in moderation. I will have 2-3 beers (max) if i go out on the weekends, but i don't want to risk it drinking any more. so i am permanently the "designated driver" amongst my friends, which is kind of a bummer but at least i am still here to drive!


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
ShellAustralia1978 #167207 06-28-2013 11:03 AM
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Just starting to get my stride post tx, and wanting a beer now and then, I say fine with me. Many of the posts here are each person's view and perspective and it is all over the map. It seems each person just needs to find that point (level of social drinks) where you believe you are realistically increasing the risk of cancer.

There seems to be little clinical trials or other studies making any connection yet we read everyday that nearly every other thing we eat or breath will kill us, so I side with do the moderation thing and go on living.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
ShellAustralia1978 #179894 05-05-2014 08:01 AM
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Here is a recent article on the alcohol topic in regards to cancer, which may be of interest to some. I'm still going to have my Michalada for Cinco de Mayo!

http://www.medscape.com/viewarticle/824237


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






ShellAustralia1978 #179896 05-05-2014 08:29 AM
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I went to the link but it requires one to sign up for a new account with login and PW and since I already have too many ads coming to me from every place I've already signed up for I went instead to OCF's collection of articles on Oral Cancer and it's relationship to alcohol here:

'http://www.oralcancerfoundation.org/search.php?cx=015422755131303034108%3Ao3fylifwmag&cof=FORID%3A11&q=alcohol%2Boral+cancer&sa=Search&siteurl=http%3A%2F%2Fwww.oralcancerfoundation.org%2F





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.)



ShellAustralia1978 #179897 05-05-2014 08:43 AM
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This is a new article, posted on April 30th, 2014, which may be part and parcel of previous studies.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






ShellAustralia1978 #179904 05-05-2014 02:10 PM
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Funny how this one pops back up. I reread it and see I posted 10 months ago. I'm having a drink now and then and not worried. My cancer was HPV, a virus, not related to the tobacco-alcohol variety of OC. I guess I could get that sort of OC but my surgeon last week just said that it is the combination that is really evil.

Gotta live a bit and risk seems a lot lower than getting struck by many other life events. Just my view. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
donfoo #179908 05-05-2014 04:09 PM
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The reason it resurfaced was that I replied to a post today that contained a comment about alcohol, and saw this recent abstract in one of the head and neck cancer news feeds today also, so mentioned I was going to post it in the discussion about a year ago, this is one, in case anyone had interest, finding it interesting reading myself, some backing up prior readings, new and not so new information, but it did not get into HPV etiology, which I always said was different cause. Nothing more or less, no judgements here. Actually, I didn't see the OCF Alcohol content Anne-Marie posted, as is, before, but seems most info is the same as the article, and is sourced from 2014.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






ShellAustralia1978 #179914 05-05-2014 05:29 PM
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Driving is dangerous (especially in Dallas)
Flying is dangerous
Sun exposure is dangerous
Poultry is dicey
Too much beef will jack up cholesterol

If I sat on my couch eating green leafy vegetables I wonder how long I would live. And if I would consider my risk avoidance as a "life". There are certainly reasons to avoid the above and alcohol, too.

Three beers give me a headache so I never have more than two. I don't begrudge anyone the decision to abstain either. I don't think a couple of beers will shorten my life. I don't think abstaining will extend it.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
ShellAustralia1978 #179919 05-05-2014 06:31 PM
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I couldn't care less who drinks, doesn't drink or whatever else they do or don't do either.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






ShellAustralia1978 #179921 05-05-2014 07:18 PM
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Sorry about the link I posted, I had copied it from the results of a search I did on the OCF main page. When I pasted it it came up with the extremely long url and when I tried it from that long link above it yielded an error page. I should have checked the link before posting. So-o-o-o-o maybe the best way to see a whole collection of news articles about the alcohol/OC connection would be to go to the OCF main page and use the search box found there. I got the articles by searching for "Alcohol + Oral Cancer". There are several listed such as "The Alcohol Connection", "Risk Factors", " Alcohol as a Cause", etc. in case anyone is interested.


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.)



Anne-Marie #179924 05-05-2014 07:35 PM
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No worries Ann-Marie, I'm glad you did post it, and I was able to open it. I know OCF has udpaded many main page topics, I now refer to, but didn't see this one for alcohol, which is quite extensive, and didn't read it until I arrived home this evening. I did check oral cancer news before posting my link, but didn't see any recent topics, but should have googled alcohol OCF or in search like you mention.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






donfoo #179925 05-05-2014 07:44 PM
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[quote=donfoo]

There seems to be little clinical trials or other studies making any connection yet we read everyday that nearly every other thing we eat or breath will kill us, so I side with do the moderation thing and go on living. [/quote]

Well said! It sometimes amazes me that any of us are still living with all of the reports that are out there about what is bad for us. It depends on how the study is done, who is in the sample group and how the data is cut. That's not to say that none of them have validity but we can't be worried about everything. Moderation is right.


3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer



ShellAustralia1978 #181582 05-08-2014 04:22 PM
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I loved my wine but at a year out I just can't tolerate it. Hard spirits are out too and not recommended anyway. However, I do enjoy my beer. 2-3 is all I can handle (I've become such a light weight!) but a couple of good beers on a Friday or over the weekend is a pleasure I savor again. It wasn't until late last year that I was able to even drink one. I started buying 'sample six packs', a mix of different beers to try. I found quite a few that I truly enjoyed.

PS... highly recommended.... . a chocolate/peanut butter porter that's like drinking a Reese's Peanut Butter Cup... Paired with a piece of pumpkin or pecan pie and it's a no brainer! Mmmm smile

Positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
ShellAustralia1978 #181663 05-12-2014 10:49 PM
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[quote]PS... highly recommended.... . a chocolate/peanut butter porter that's like drinking a Reese's Peanut Butter Cup... Paired with a piece of pumpkin or pecan pie and it's a no brainer! Mmmm smile[/quote]Well, sounds like the new "normal" for you! I can do porter but not if it tastes like a candy bar. LOL


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
donfoo #181797 05-17-2014 09:46 PM
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It's called "Sweet Baby Jesus". A chocolate/peanut butter stout that's more of a dessert beer than one to drink watching the game on Sunday but truly a wonderful experience. Here's my review:

Sweet Baby Jesus � DuClaw Brewing Co., Baltimore, MD

This porter beer pours thick and is a prelude to what follows. You can smell the chocolate and peanut butter as you pour it and it has a bit of hops and the malt you would expect of a porter. The taste?...Very chewy for sure! It�s like a dark chocolate Reese�s Peanut Butter cup in a glass. More a dessert beer than an everyday drinker but just plain sinful all around! Serve this with a spice pumpkin or chocolate pecan pie and it�s a no-brainer. 6.50%ABV

One more to try...

Breakfast Stout � Founders Brewing Company � Grand Rapids, MI

Wow! I have to thank Coe at the Woodstock Caf� for this one. I asked for a �chewy� dark beer and this was his recommendation. The label is cool so that�s a good start. This beer pours thick with a beautiful head and exquisite lacing. The aroma was heady with coffee, chocolate and malt overtones. The longer it sits and breathes, the better the aroma. The taste? What�s not to like? Everything and more than what you expect from what I consider the perfect stout. Coffee up front and a sweet chocolate aftertaste that just begs for another sip. At 8.30ABV you better be careful or you�ll stumble upon trying to get up from your chair after 2 of these!(experience speaking). In my college days this would have been the perfect brew with cold pizza in the morning after a night of touring the frat houses! (Warm or chilled). If this was available back then I�d be wondering if I had a few unaccounted for children in the world ~lol~ 5 star! Thanks Coe!

Positive thoughts and prayers








57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
ShellAustralia1978 #181802 05-18-2014 05:17 AM
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I've been struggling with the question of whether to have a few drinks now and then or not at all. A few of my doctors told me I shouldn't drink at all, some said in moderation. I am HPV- with unknown primary which leads me to believe that my OC had a good chance of coming from my previous alcohol consumption (3 or more drinks just about everyday for the past 40 yrs.) It sure sounds like an awful lot and really is but, I'm quite healthy ( except for the OC ). I've had a few drinks now and then since the completion of my treatment but, I just can't get over the thought of having another bout with OC because I wanted to drink again. So I have decided to quit completely. I loved my cocktails, and this will be hard to do. Whether alcohol was the cause is just my opinion based on my own research. It's just not worth the risk for me.


Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
ShellAustralia1978 #181807 05-18-2014 07:45 AM
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Calhoun, I went through the very same thought process. I had not yet started my first treatments when I read (courtesy of Google) that 70% of patients who did not quit drinking when they were diagnosed, had recurrences.

Like you, having just heard a litany of horror stories concerning the treatments I was about to undergo, I finished the drink I was working on (2 oz of 9 year-old Knob Creek over 4 ice cubes;) rinsed my glass and had 2 oz of Black Seal dark run, and quit drinking.

Then, just over a year later, I had my first (of 5) recurrence which was a distant metastasis in my liver.

Well shoot, now that I did have a recurrence, I asked my MO if it made any difference whether I resumed drinking or not. He laughed and confirmed that the horse was out of the stables and there was nothing to be gained by resuming moderate drinking.

I am currently finishing a cup of coffee, sweetened by an Oz of Knob Creek 9 year-old.

Trust me, it is with nothing but brotherly love and compassion that I say that I hope you never have the same opportunity to have another drink. But if you do, enjoy it to the fullest!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
calhoun #181814 05-18-2014 06:35 PM
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I too made the decision to take the advice of the one of my oncologists who said not to drink. The other said it was okay in moderation. But I figured better safe than sorry. At this point it's been at least 4 years since I last had a drop and although from time to time I think about it, on balance I'm good with my decision.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
ShellAustralia1978 #181817 05-18-2014 08:13 PM
Joined: Dec 2003
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One downside of alcohol is the vagal neuropathy many of us acquire. Alcohol is potentially a trigger for some episodic excitement. I had some Cream de Cassis last Sunday night and have been barely able to breathe all week, forced to do constant breathing treatments.

Viva the vagus


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
ShellAustralia1978 #181905 05-22-2014 04:12 AM
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Thanks for your thoughts Bart, David2 and Uptown. I'm fine with my decision. I had a lot of good times with drink and a lot of bad. Never could get a handle on that moderation thing.
Whether I caused a recurrence remains to be seen. It's time for another PET soon. At least I still have my opiates for now. I guess I'll have to follow Huey Lewis's quest. Thanks again.


Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
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