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#200055 04-15-2020 10:11 AM
Joined: Apr 2020
Posts: 2
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Joined: Apr 2020
Posts: 2
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I have been fighting cancer for more than 15 years. My current challenge is trying to learn how to swallow after a total glossectomy and resection. I am feeding myself with a gastric tube, and expect that to continue for life. However, I would like to be able to enjoy a glass of wine from time to time.


Earl
squamous cell carcinoma first diagnosed in 2004
more than a dozen procedures over the years
radiation treatments in 2006
partial glossectomy/resection in 2009 - able to speak, eat and drink normally afterward
complete glossectomy/resection in September 2019
radiation + chemo in Nov/Dec 2019
all nutrition through gastric tube (bolus feedings with syringe)
Joined: Jun 2007
Posts: 10,507
Likes: 7
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Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Welcome to OCF, Earl! It sounds like you have been thru quite alot the past 15 years!!!

I suggest asking your oncologists (or their nurses) for help or asking at your treatment facility for an SLP or someone to help you learn how to manage your newly configured mouth. They can make a significant difference in many oral cancer (OC) patients recoveries. As far as wine intake goes... do yourself a favor and ask your oncologist about consuming alcohol. Many members (including myself) were told absolutely no drinking alcohol but a sip of beer or wine occasionally should be ok. They usually mean on a very rare occasion its ok to have a couple sips, so ask the docs to clarify what they mean by occasionally. Usually they mean hardly ever but if you must be careful and keep it minimal as in only take a couple sips every few months and not any of the hard stuff.

One thing I should tell you about is my good friend who went thru so many recurrences I lost count of them, poor girl was sick more than she wasnt. One thing she did that I didnt was to drink alcohol. While we both had long, hard roads to get the coveted cancer free diagnosis, unfortunately her path was different with the choices she made. She insisted drinking "moderately" was perfectly ok but her definition of moderately was not taking her multiple OC history into consideration. Drinking and/or smoking puts patients into the higher risk category to get OC among other serious health conditions since their immune system is already compromised. My friend loved to socialize and frequently had parties with her friends, drinking alcohol was a big part of her parties which she refused to give up. I tried talking with her many times but she always insisted a few drinks consumed "moderately" was perfectly ok and she refused to stop her parties with friends. As you can probably guess, this did NOT end well for my friend and there isnt a day that goes by that I dont think about her and miss her. How I wish she would have listened to me and eliminated all alcohol from her intake. If you decide to drink wine, it can be put down your feeding tube so it avoids your sensitive mouth tissue. Another good friend would put their wine in their tube on a regular basis. After many years being cancer free he had a recurrence and couldnt bounce back from it. Sadly he is no longer with us either. If you go that route, please pay careful attention to any medications both over the counter and prescription you take, ask your doc and/or pharmacist.

Different doctors will have different opinions on alcohol consumption. Its important for you to receive their guidance in deciding if you will be ok to drink wine here and there.

Im always super cautious and would much rather be extra careful and avoid any issues down the road. Please be very careful with whatever you decide. Regardless of your decision, we're here to help you as best as we can. Best wishes with everything!!!


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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