#85356 12-04-2008 09:22 AM | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: May 2008 Posts: 219 | I thought I needed some vegetables bady and thought I would get some V 8 to drink. It tasted a little like pepper and hot but I drank 4 oz each day for 2 days and let me tell you, don't do it! It ruined my mouth and the hot pepper taste is still there and won't go away. lol Just thought I'd let others know so they don't make that same mistake. Now my RO office said don't drink anything citric. And no V 8 tomatoe juice at all. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | make your own fresh juice hon - it won't do that carrot juice with a little apple is good for you and nummy and adding in cruciferous veggies is also good
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Try some chocolate milk to soothe your sore mouth.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Cans of whip cream! It nicely coats and soothes. It does come however with a warning. Do it at your own risk if you are surrounded by family who want to loose weight.....
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I was drinking a lot of the V8 and mine didn't have hot pepper in it,. I was buying it at Sams Club by the case. I bught some mix powder called muscle milk, just mix it with water and it does help put the meat back on ones bones. Not cheap tho unless the drug store has a sale.
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
| | | | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2006 Posts: 294 | Are you sure you weren't drinking the V8 Spicy version? I drank loads of V8 during Tx days (and still do) but never had such a problem. I did find that most anything even slightly spicy following Tx seemed to really seem hotter for quite some time.
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
| | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | I still have a problem with anything tomato. Early on after treatment tomato juice was worse than vinegar or pickles. Avoid them for now. You likely will find is less a problem as time goes on.
Be concerned about thrush or oral fungal infections. They will make the mouth far more sensitive. I never had "typical" (ie visable) thrush symptoms but convinced the doc that I wanted to try Nystatin to see if the burning sensation would go away. Every time I had excessive burning sensation, anti-fungal (nystatin) would make it go away.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: May 2008 Posts: 219 | Rita,Christine, and Markus, Those sound good!
Jim, I went to recheck after reading your and Bill's post and it is just plain V8. Must just be my taste but the hot flavor won't go away, I'll just have to wear it off I guess.
Bill, I know one thing, it will be awhile before I try anything different than normal for me. lol I'm glad it didn't hurt you. When I was drinking it it sure did taste like something anyway. Now I know why.
Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Another thing to beware of is Chinese food. There is some kind of spice in it that gave me the same reaction. Luckily I had my chocolate milk handy. 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: 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 | At first everything tasted like crap and I couldn't handle fizz or citrus. It almost seemed that everything I liked tasted the worst with the exception of milk. Now 2+ years post Tx and I have ZERO limitations. I don't think my saliva nor my taste is 100% like it was pre Tx but at least everything I use to enjoy, I can enjoy once again. This didn't happen over night so please be patient and see what happens to you.
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 | If you like V8 and still want the vegetables in it there are several different kinds that are available V8 Splash...strawberry bananna flavor, strawberry kiwi for a few...although I found them to have a lot of salt... Ketchup still burns wierd I didn't like it much before surgery though..
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Add ginger ale to the list too. It lights you fire real fast. I force the things that burn down sometime just to remind myself what they taste like.. Sugar is ine thing that gets me every time. That I am going to quit trying, even with cereal.. I do use the sugar substitute also.
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
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Jim--wouldn't it be easier just to smell for the memories! Birch beer burns...I miss Birch beer.
I wonder if sweat and sweaty buffalo wings would burn? Just a couple...one?
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: May 2008 Posts: 219 | Yea, I bet the ginger ale does lite you up. I tried Sprite and found out I can't drink soda's. It has been years since I drank a soda but one day at chemo a lady was drinking a sprite so I thought I would try. Big mistake!
Also, I had to start grinding up a few of my meds because they get stuck in my throat. Well one of them is my asprin and let me tell you that one does me up a job. But I can't swallow them no matter what I do other than to grind it up. Everything taste like salt to me. I can't even taste sugar.
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Angel,
Ask your doctor for liquid meds. Mine would burn awfully bad but mixing it with warm tea did the trick.
At one point through tx Gatorade was like drinking acid.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I had to avoid anything acidic during mid Tx to several months post Tx. Even canteloupe would burn like hell. Hot & spicy didn't work either. Nor did anything too salty. Like David though, after a year or 2 I was eating virtually anything I wanted. I was able to eat pizza and salad with dressing 2 months post Tx (and taste it).
It took longer to have every subtle flavor come back. Sweets took the longest.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I was extremely sensitive to salt at first (post-nuking), which has now returned to normal, but my sweet tastes have NOT returned, and now my taste is even worse because my wrist didn't have taste buds... I can feel the effects of sugar, like in coffee, but not the sugar itself.
I also couldn't take the burn of regular Gatorade but found their G2 version is OK.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | First everything tasted burnt. It was like eating charcoal out of the firplace. Even water tasted burnt. That thankfully lasted only about 2 months. I was also overly sensitive to salt. Anything with a little salt would burn my mouth and taste awful. That took a long time to get thru. Forget soda, cant drink it at all, still burns my mouth. 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angels, Can you get the coated aspirin? That's what I have to use but they go down fairly well. I have trouble with some of the uncoated meds. I wonder where they get the ingredients for some of them? Hummmmm any barns nearby??? LOL
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
| | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: May 2008 Posts: 219 | Ray, I have asked numerous times about liquid meds but the Dr.'s wouldn't give them to me.
Gary, That gives me hope about the 2 months and tasting something. I sure hope i do as I am dehydrated still and so weak.
Pete, I will give the new gatoraid a try. Water and Ensure is all I am trying right now. I tried a burger and it felt like it ripped my throat going down so I don't want to do that again.
Christine, I won't miss soda's because I haven't be a person to drink them for years now. But I sure do miss the taste of food and chocolate and coffee. My mouth taste like salt all the time. I can't brush it out or mouthwash won't get the taste out.
Jim, Yes I do take the coated asparin, Ecotrin. That is one of the ones that won't go dowm and when it gets caught in my throat, it sacares me because it is a long time before I could get it to go dowm. I hope there aren't any barns nearby too. lol Hope you are getting better too. Today was my last treatments. I am on my way to recovery now! Yea! Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | 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 | Even though sweets never really left me and were the first to come back strong, chocolate took a long time to taste anything but bitter.
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | After a few months I started drinking Coke and I found the carbonation helpful in helping me swallow. It gave my RO fits however (becuase of the sugar content) and eventually I switched to plain selzter water. I still rarely drink soda anymore. I also drink more tap water since bottled water removes the flouride which we need.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Gary,
If you like bottled water, buy the one that contains Fluoride. I heard that carbonated drinks help us swallow better but from what I understand any carbonation is bad for good enamels. And are not our enamels damaged from the radiation?
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Ray, I have never heard that before, that CO2 is bad for enamel on teeth. Perhaps Brian can enlighten us. In a Google search all I could find was mostly anecdotal evidence that "carbonic acid" is formed by the CO2, similar to acid rain, but in minute amounts.
In my case it's not the enamel that's causing the problems, it's the root exposure from gum recession caused by the radiation.
I only drink bottled water now when required by convenience, prefering tap water when at home or in restaurants.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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