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Beer or Wine Never Again?

HobbsDoggy
Posts: 165
Joined: Feb 2013

Me - Stage IV HPV neck, unknown primary. Neck Dissection, 7 weeks radiation and chemo. One of my doctors said never to drink anything with alcohol and another said one or two beers or glasses of wine every once in a while is just fine. I am still without much ability to taste so neither have been a temptation. When (notice that confidence?) my taste comes back an occasional glass of wine with dinner or an occasional beer after working in the yard just seems great, but don't want to do anything that would give the C a foothold. Anyone else's doctors give them similar instructions? Seems like a minor problem I know, but some days a minor problem would be nice to discuss.

phrannie51's picture
phrannie51
Posts: 3791
Joined: Mar 2012

many people have a couple of beers when they feel like it....there might be a few that can do wine, but if my memory serves me right, it retains a nasty taste for many...and that's the reason they don't imbibe.  Maybe the one Dr. is a teetotaler?  I know that they say heavy drinking and smoking can cause throat cancer....but if having a beer or two is all a person needs, then I can't see what harm that could cause.

I drank my lifetime allotment of 40 million gallons by the time I was 35, so I am in the teetotaler catagory....if I could pull off "moderation" in the booze department, I can't think of anything tastier than an ice cold beer on a hot day.  Laughing

p

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

To the best of my memory (which is terrible) I don't remember anyone saying anything in particular about drinks.

I had a a half of a glass of margarita in December and it was delicious.

luv4lacrosse's picture
luv4lacrosse
Posts: 1402
Joined: Jul 2010

I am battling the beast for a second time since 2010. I do drink when I feel like it. The docs all seem to follow the American Cancer Society guidelines. I just finished a 24 week clinical trial a month ago and have been in remission for 18-20 weeks. 

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

"Eat. Drink. Enjoy the work you do. Be thankful for the Blessings God gives you in this life. Live, LOVE and seek out the things that bring your heart joy. The rest is meaningless, like chasing the wind."

That being said, I've been told by my doctors that hard alchohol is a no no. I was a smoker for 35 years. I quit cigarettes in '95 but continued cigars up until last year. No doubt on my mind where the cancer came from. One of my favorite pleasures/pastimes was a good cigar (can you say Partegas?) and a snifter of cognac, especially on a crisp cool Sunday afternoon during football season. 

I've also been told by my doctors that a cold beer or a glass of red wine every once in a while is Ok. Just no finishing off a bottle or a 6 pak. So I, like yourself, am looking forward to the day when I can pour a rich dark meal in a glass beer or a tasty glass of Red (love S American Malbecs) and watch the game :) 

"T"

 

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

T

 

As I said before, we could be twins.  Except of course, you're better lookin', have talent, write very well..........Ok, maybe we aren't alike. 

 

Anyways, you brought up my only sore subject.  Since TX ended, I try to be the best person I can be; try to eat as healthy as I can, don't eat sugar or soda; work out like a mad-man, volunteer whenever I can, BUT...................I MISS MY CIGARS!!!!  (personal choice - cohiba)

 

Thanks for reminding me :)

 

Greg

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

Greg,

~lol~ Didn't mean to jog your tobacco memories. I still have a humidor upstairs with a dozen or so cigars. My fav "was" a Partegas Cifuentes Febrero. I have a few ohers including an Ashton and a Macanudo or two. They all went well with Courvoisier XO Imperial ;) Equally as enjoyable was Rouge Chocolate Stout, slightly chilled. 

The irony of it all was last August when all of this started, I had caught a cold/sinus infection. On the way home from a gig I was enjoying a cigar and I started coughing bad. I made up my mind that night to give up tobacco. I purchased an electronic cigarette kit (wish they made an electronic cigar kit!) to wean myself off of nicotine and surprisingly, they worked great. The vapor was way less irritating and I still got my nicotine fix. I told my primary physician and while he wasn't thrilled about it, he agreed it was better than all the crap that's in tobacco.... and it worked! 

The rest is history... persistant swollen lymph node, several series of antibiotics, the "Hmmm/Uh Oh" moment, diagnosis blah blah blah. Bottom line is that I had SCC for some time even prior to noticing the symptoms and quitting tobacco. Knowing that the likelihood of me getting cancer was from tobacco makes it an open and closed case but like you... as crazy as it sounds, I do miss it too! I have to go ahead and give them away to some cigar smoking buddies and make sure I go through my tackle boxes so I don't accidently discover one down the line Fishing and get tempted (a fine cigar and fishing go hand in hand quite nicely). 

So here's to eating healthy, being healthy and reminiscing :) 

"T"

 

 

 

hlrowe
Posts: 23
Joined: Oct 2012

l`ve decided to forget alcohol since I started treatment April of last year. I was a light beer and wine drinker for the last dozen years or so. I finished cisplatin and 35 rads June 12. It would probably burn and taste bad anyway. Plus, I figure why introduce another risk factor for reoccurence?  I gotta admit, I do miss my weekly Friday night draft.  I told my MO and RO I no longer drink but I don`t remember them saying I couldn`t?

D Lewis's picture
D Lewis
Posts: 1540
Joined: Jan 2010

Had this discussion with my Stanford Doc.  He said 'everything in moderation' and noted that my HPV-derived base-of-tongue SCC was not caused by alcohol, and did not believe it would be negatively affected by alcohol. 

That being said, I'm not a drinker, and never was.  I don't imbibe hard liquior, never did.  I've always enjoyed a glass of wine (part of a glass of wine) with a fine meal, and I've enjoyed a beer (part of a beer) on a hot day.  The taste of beer came back within short months of completing treatment.  2 1/2 years out, and wine still mostly tastes too acidic and sour, because I can't fully taste the sugars, so drinking really isn't a big part of my life. 

I don't worry about it though, and drink when I want to, albeit rarely more than a half glass of anything.

Deb

boardwalkgirl
Posts: 263
Joined: Jun 2012

I asked my radiation oncologist about this and he said an occasional drink or two was no problem if I could tolerate it. So far I have not been able to drink wine, I have done a couple of mixed drinks. My taste buds have taken a vacation again this week so until they come back I won't be tempted, lol. He said it is heavy drinking that puts you at risk.

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

Nuff said on my part...

HobbsDoggy
Posts: 165
Joined: Feb 2013

My plan is when it seems like the taste might be there is to try a beer or a half glass of wine. I don't see me drinking more that two or three a week maybe not that much. It would be nice if and when the taste comes back to enjoy a glass of wine with dinner. I was not a drinker more than that normally so no big deal. Just would be nice to get the taste back. Maybe its coming very very slowly, just a little over two months out from my last radiation.

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

We are 11 wks out of tx and were just told last month NO alcohol for the rest of his life in any way, shape or form. It was a bit of a shock to us as he's a mild drinker anyways and the culprit seemed to be from the HPV, but they said to stay away from it completely. Their reason was this type of cancer tends to cause recurrence from the alcohol. Was enough to scare the "S**t out of us, so we're staying away as requested. He asked them if he could just have one beer once in awhile, they still strongly pressed against it. We didn't ask to many questions. They're the doctors. We just want to keep this cancer as far away as possible. 

Right now, we're just concentrating on healing and have a scan at the end of the month and praying we are cleared. We would drink Kool-Aid the rest of our lives if that's what they told us Laughing

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

But I have never heard anywhere or have seen any mention, let a lone specifics, study, reports, etc... Tying HPV derived or actually any cancer recurrence to alcohol post Tx.

Actually several of the top medical facilities even state there is no evidense...

I am in no way trying to endorse, convience, or change anybody's opinion... these are purely my observations from a little non-professional research.

I have seen a lot of mention of moderation..., but nothing really on abstinence.

JG

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

I agree with you John. I have no idea where/how this hospital is pulling their evidence from either. As I said, we were shocked that was the instruction and from more than one doctor. But, maybe that's what they are telling all their patients whether HPV or not because they really don't know, so why not be cautious?  As you know, even though Kreg has just been a moderate drinker, he's not thrilled with it. But early in this stage he's at of whether they got all of this beast and waiting patiently for a scan, he is at their mercy and will do anything they tell him at this point.  

~C

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

of my doctors have ever said never to have alcohol again.  Since I can't swallow right now though, my alcohol consumption is down to maybe once a month during our poker game, I might pour some down my feeding tube strictly to keep it cleaned out (wink, wink).  Hard alcohol warms ya up pretty quickly while a beer gives you that little "poof" at the end of putting it in that lets you taste the malt and hops.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Hobbs,

 

Have you got on Skiff's "how did you get your name" post .  Curious about yours??

 

To quote a great intellectual  "I fish............therefore I drink beer"

 

I didn't drink for 1 year after end of tx.  I will have an occasional beer.  Maybe 3-4 a week, tops (unless I see Mike). However,   I love a good single barrel bourbon, but I do abstain (ok, maybe one a year). 

 

I did a survey with my 4 docs.  ENT - occasional beer or wine ok; RAD - same as ENT; GP - same as ENT and RAD;  ONC - NO alcohol at all.  3 out of 4 wins.  Seriously, my opinion (for what that matters), keeping in good physical shape and eating good and having a good positive attitude will do much more good than what little harm a beer or a glass of wine will do.

 

Greg

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

I agree with Greg, moderation, and live and eat healthy...

I did want to mention though I have nothing to back anything... I'd probably wait or be very limited the first year or so so as to give the body a goo chance to recover and heal up...

LOL, no scientific backing there at all, just my thoughts...

I thought that phrase was something from IBM..., LOL Although I know that IBM probably applies more to Kreg right now, or his wishes anyways...

JG

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

LOL....John. It's funny I'm on this forum reading about all of this and Kreg was at a meeting and calls to say, "Hey, I'm feeling pretty good right now, gonna stop and have a beer with the guys afterwards"!....I'm like , "OMG! You know you aren't , but you won't believe what discussion I'm reading right now"...LOL. He can't wait to read everyone's comments....I know he wants to sneak one in when this is all over with : )

 

~C

CivilMatt's picture
CivilMatt
Posts: 3020
Joined: May 2012

HobbsDoggy,

 

Well, after  reading these posts I am even more confused.  According to Phrannie’s equation I should be able to drink up to 69.6 millon gallons (and no more), but if Cris is correct any alcohol can cause a reoccurrence (if you were HPV+).  Then Skiff pipes in since he already has violated Cris’s truth and nobody told him and Greg and T are drinking wine and cognac and puffing cigars (which can’t be good) and Stacey shows up without a goat story (what is happening).  Additionally, luv4lacrosse, hlrowe, and Deb mention moderation (what moderation) and George gives fairly believable story about PEG maintenance.  You know, I feel at home you are all my kind of people.

 

The drinks are on me,

 

Matt

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

my feeding tube will reach all the way cross country but, it sounds good to me Matt.  Gotta get my gastroenterologist to put on a few extensions.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

you guys (and I mean Phrannie, stacey & Deb, too) are cracking me up.  It will be a hoot when we all meet some day.

George, can't you just get a couple of those things they solder pipes together with ....and add a few thousand feet to your tube ?

So if you were HPV Pos, then you can drink some.....but if HPV Neg (like me) you can't drink anything....and of course you can't smoke in either case.

Even though my 40 years of smoking was to blame for my tongue cancer, I still miss the damn things on occasion.  I don't think that ever goes away, T-man.

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

We're busting a gut right now Matt....LOL! You've come here to try and clear this all up and we've literally made a mess of it. Good thing we're not all doctors trying to give advice.....we'd be in a world of trouble with all our "gathered reports"! 

My final question: How do we claim our doctors are possibly over reacting on this,  yet believe everything else they tell us? ... 

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I've been rethinking this situation.  I'm gonna have to get Matt a strong pump to get it pumped over all those mountain ranges out west not to mention the Appalachians back here.  It's either that or get a very, very tall water tower.  But then I don't know how Matt would be climbing all those stairs.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

that is true George...it's a long long way from Baltimore !

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

George,

I keep getting this mental picture of you sitting at the poker table wearing a modified "beer helmet" with custom IV drip control ;)~

"T"

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Don't give me ideas, T!!!!!

CivilMatt's picture
CivilMatt
Posts: 3020
Joined: May 2012

George, Ingrid,

 

I am all in, but I was HPV+.

 

Matt

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Matt,

I just reread your bio page....did you also have a partial glossectomy ?

CivilMatt's picture
CivilMatt
Posts: 3020
Joined: May 2012

No, just a surgical eviction of an HPV encampment on BOT

Matt

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

I was more leaning toward the funnel and tube...

Kind of like in the "Ole Days"...shot gunning beers...

Punch a hole in the bottom, put it over your mouth (face up), then pull the trigger..down the hatch in about 3 seconds...

JG

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

Hey HobbsDoggy, your post deffinitely wins the prize for hottest topic in a long time, since we're talking about 27 plus comments, in about 5 min, give or take.  I guess lots of folks had quite a thirst for this subject, but I think that it is most admirable that everyone has posted their responses in moderation, nothing heavy, or excessive.  Well, here I am to serve up my take, which I think will go down pretty smooth, and  easy.  I've been on a tube, my good buddy (I don't leave home without it), for the past 12 and about a half or so years, and have just recovered my ability to swallow in June of '11.  Back in the olden days, before treatment, I was a moderate drinker (just one or two glasses <a 64 ounce glass is moderate isn't it? >.) of beer, wine, and sometimes something harder.  So, sometime after I finished treatment back in '00, I asked my trusty ENT whether or not I could include a bit of alcohol with my tasty meals of Pro Balance.  The good doctor said as a majority of the other postees docs have said, go for it, but in moderation.  So, my motto became, "if it flows, it goes," and it has been flowing regularly ever since.  Now that I can swallow (liquids only) I thoroughly enjoy a beer, or glass of wine with dinner.  And, when I get back home, after I've been out hiking in the swamp or other wildland all day, I most certainly enjoy a celebratory end of the trail toast with a glass of single malt scotch and soda with a twist.  That's my shot at this subject, although it does appear to be a bit excessive, my apologies, I've gone over the limit, but I'm not sure that I have exceeded the legal limit.    I think I remember that Matt has the next round, so I've got the 3rd.  Cheers!  

PATRICK

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

It's posts like yours and Brigit's in WV that give me hope of breathing and swallowing normally again.  I've been on the verge of just giving up.  I needed to read your post today and Brigit's a couple days ago.  Thanks again!

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

Hey George, I'm glad to hear that got a lift from my comment.  I know what it's like to feel less than hopeful; it's not a good feeling.  If this journey has taught me anything, it's that recovery is a marathon (which we have to sometimes take one nanosecond, minute, hour, or the ever popular day at a time), so we have to pace ourselves.  I have found that it is amazing how resilient we are over time,  the key word being time, as it does take time, and a whole lot of patience.  After surgery, and during my oh so memorable radiation treatment I was very dispairing and barely able to walk around the block, which was very crushing to me since I was/am and avid runner forever years.  Within the following few years I had recoverd quite well, was able to run again, and ran a half marathon, and then the following year a marathon, both with my trusty, best buddy PEG tube along for the ride.  It takes time George, so keep it movin forward with positive "I Can Do This" energy, taking your time as you do; you'll get there. 

PATRICK

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

George

We were just talking about a goal of having a beer now and again---so never give up on your goal.     You just have a different goal -- working towards losing your trach and even your feeding tube maybe some day.

It may sound undoable now....but look how much you've already come thru.   If you are like me, you may have thought that you would never even make it this far.

So keep on moving ...always forward one step at a time.

Besides, we all need your words of wisdom around here.

 

HobbsDoggy
Posts: 165
Joined: Feb 2013

You asked about my screen name.  We had a German Shepard named Hobbs, wonderful dog, smarter than me and stronger too.  We lived in the county then, many dogs since, loved them all, but him best.

I think the topic hit a cord as taste and eating is a huge problem to be overcome for most or all of us.  The idea of a glass of beer or a glass of wine with dinner maybe means we hit close to normal and that is what we are looking for.  Sure "cure" is number 1, but getting back as close as we can to normal and simple pleasures has to be a close number 2.

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

First, there's not much that beats a beloved pet that has a special place in our memory and heart, so I'm lovein HobbsDoggy for your name.  Second, I think that you nailed it in your comment about the symbolism of being able to enjoy, once more, the simple pleasure of having a favorite beverage with a meal; yeah, I'm with you as that being a number 2 goal.

PATRICK

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

AHHHHH, another dog lover....as you can see I am one.  Had a special GSD named Heidi in my past also.  Now have our 6 yr old golden retriever boy named Barney who is my best bud...He was a huge help to me going thru treatment that's for sure.

Many of us are pet lovers.....some of us even like goats...whatever it takes.  I have always thought that it is a special kind of human that can open up their heart to love an animal.

I agree with having a goal to work towards in this cancer fight....always need a prize....even if it's only a half a glass of beer or wine.

 

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