#81315 09-30-2008 06:36 AM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Having just got over jet lag and coming back from yet another protodontist appointment for yet another crown as part of eternal gift of radiation on my jawbone and mouth, thought I'd survey the board on what advice their ROs had given on drinking. Actually when I was struggling with weight issues during my radiation, my RO said it was fine to drink a beer or wine, just no hard liquor. Not only did it give me 160 calories that went down much smoother than the Ensure Plus, it did give a nice kick to the oxycodene and made changing the burn dressings far more tolerable. Many of the posters here report they have been told zero alcohol - while some report advice similar to mine: one or two beers or wine. I understand in advance that alcohol and smoking are documented cases of oral cancer but our numbers are so few in comparison to the drinking population that moderation seems statistically safe. I recently had our 47th 8th grade reunion, and there was just one teetotaler there while I was the only OC guy. anyway, for what it's worth, I can taste my beer and it certainly made last week's trip to Italy much more enjoyable at the cafe's. Just a thought for those starting this mess, that not everything is lost in the "new normal" 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | BC (b4 cancer) I would enjoy a ice cold beer and when I was first Dx'ed my RO said no more smoking or drinking. I then told him I didn't smoke and he said then no more drinking thru the Tx. After Tx he told me that I could drink but not excessively and of course beer was the farthest thing from my mind consumptionwise until 8 months or so post Tx. I reaquired my taste for beer several months ago and I have one or two occasionally and I enjoy them just as much as BC.
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: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | Right on ....I enjoy the odd one myself...but have a ways to go before I can indulge...there are lots of things...I am starting to feel a little cooped up and well just wanna do...can do some but not without consenquences....I know time...everything revolves around it...and baby steps working on them too... Have one for me david...I sure would appreciate it...
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | 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 | I was never much of a drinker. Those drinking days were a long time ago, before I got married and had children. Now, Im too chicken to try a drink. Soda burns the heck out of my mouth so I figure cant drink either.
How was Italy? Did you see the Trevi fountain or the Spanish steps? How about Venice's huge square by the clock tower? (St Marco's??? still forget the name of it) Did you eat gellato?
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Christine Thanks so much for asking, I have been dying to share our joy. Italy was lovely and the weather sort of cooperated with a Rainy cold day in Rome (1 out of 4)and an overcast cold night in Venice (1 out of 3). Yes, we saw all the must see sights in Rome: Trevi fountain, Spanish steps, Castle St Angelo, Vatican museum, Sistine Chapel, St. Peter's basilica, lots of other lesser known churches lesser specific statutes and pictures my artist wife just had to see; the Forum, Palatine Hill, Coliseum. The best part was validation of a last minute decision to cancel the hotel reservations I had made way back in June at the Kennedy Hotel which is near Rome's train station (Termini) and take a chance on a travel forum's (Trip Advisor) poster's recommendation of a 16th century reconverted building that had a bed and breakfast. It was on a cobblestone street in a picturesque labyrinth of narrow twisting streets of the historic city centre, embroidered with antique shops while the artistic centre and the most famous and fashionable shopping streets plus the social hub of Rome, Piazza Navona just round the corner. This is the Rome of your dreams. Both Medieval & Modern. We LOVED just opening the windows and shutters overlooking the street, leaning out the windowsill and watch the strolling people below at night. During the morning, little children were being led to a nearby school or day care amidst a stream of tourists with maps. The biggest surprise was a private bathroom that was bigger than our hotel room in Venice !!! Seriously, there was a huge Roman soaking tub that was SIX foot THREE inches long and THREE foot NINE inches wide with a platter sized showerhead. Venice was equally magical albeit the hotel room was a tiny jewel. Our room overlooked the delightful courtyard pictured on their web site and it was so quiet at night. The room smelled great and the furnishings were elegantly done. The shower stall was small and while fine for us, we wondered how some guests we saw did not get stuck in it. This time we sprinted through the sights: St. Mark's square, the Basilica, Doge's Palace, Rialto Bridge, Grand Canal, and glass blowing factories on Murano Island in favor of sitting in gorgeous canalside restaurants or in a delightful 17th century plaza people watching with a cold beer. We did not do any gelato as neither of us is or were big on Sugar plus I have not been able to taste ice cream anyway. The only hassle the entire trip was when Austrian Airlines confiscated my water bottle for dry mouth at one of their own internal security checks before their departure gate waiting room but it had no water for sale or available for the next two hours. Thank god I had taken a hint from the posters here and poured some Biotene mouthwash into a little spray bottle that met the 3.5 oz limit in the ziplock bag. Ah , the joys of the new normal. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | 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 | It sounds like you and your wife had a wonderful time in Italy. Thank you for sharing all the fantastic places you were able to see. 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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | The trick for defeating the security guys is to have one *empty* bottle (they should only confiscate the ones with something in them) that you can then refill from drinking fountain or rest room sink.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Pete
That works in the good old USA, but overseas, even in airports for me, the risk is too great - especially right before boarding on a 12 hour flight with 1 toilet per 100 passengers. Too many times on my travels have I had to refrain from "I told you so" to companions who insisted that the local water was fine according to the guidebooks or authorities. One of the four movies we watched on the plane (yes 4 full movies and still plenty of time for food and the FREE wine on foreign airlines) was Sex and the City which had a hilarious but scatological scene based on one innocent slip/sip in the shower of a 5 star elegant Mexican resort. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | I often carry a "Platypus" .5 ml collapsble water bag because it is much lighter and less bulky than a bottle and can go in a purse side pocket. I empty it before going through security and refill from a water fountain, faucet or if necessary from bottled water. I have gotten some funny looks when drinking from it because it looks like an IV bag. It comes in different sizes and has acessories including filtration kits. I bought mine at a sportswear store. http://www.platy.com Some security personnel must get extra points for over-caution. About 30 years ago when hijaking of planes was common one of my boys put his day-glo green "brass knuckles" water gun in my purse. The "knuckles" went over the fingers. The reservoir which was hidden in the fist resembled a hand grenade so security would not let it go on the plane nor would they allow a stewardess to put it away until after the flight. They could plainly see that it was a toy but we had to get a box and put it through as checked luggage. I carry a small spray bottle of water in my purse to mist my face for cooling and setting makeup, to spay on my "coiffure" when I don't have time to set it, and as part of my on-the-go watercolor kit. I once had to do the TSA Hokey Pokey because it showed up on the xray of my purse. If I had been asked I would have shown that it was empty. Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Dianne, I am no indulger either. I used to like a good german beer when I was mowing my 3 acre lawn. Heck, I would enjoy the taste of fruit juice. LOL The best taste I have for liquid is black coffee.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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