#60423 03-06-2007 09:53 AM | Joined: Feb 2007 Posts: 77 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2007 Posts: 77 | Hi All,
I am 4 months out of radiation therapy (for tonsil cancer with 2 lymph nodes), and my taste buds have come back quite a bit.
Due to dry mouth, however, I usually drink lots of water when eating - unfortunately a rather poor saliva substitute. And for many food items water seriously degrades the flavor and texture.
Does anyone have any suggestions for other liquids to take with food which would be better than water?
Thanks in advance,
Chris
SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
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#60424 03-06-2007 11:14 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2007 Posts: 108 | I am 4 years out and still have to drink water with food sometimes, especially breads, etc. There may be some other solutions for saliva, but in my experience, they are extremely expensive for the benefit you get which is equal to using water in my case. Water, and therefore cheap wins. I have not noticed any flavor change though, so can't help you there.
It took 14 months for everything to taste the same as it did post-surgery and pre-radiation for me.
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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#60425 03-06-2007 11:52 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Chris, I was not completely without saliva, but I drank lots of milk, apple juice, flat frasca, flat ginger ale, beer and some white wine. Also drank lots of water ice cold. I still drink lots of water with meals when I also have wine. Experiment with things you like. Hope that helps.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#60426 03-06-2007 12:14 PM | 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 | Chris,
I drink milk with every meal but I was a big milk drinker before Tx. I drink water the rest of the day so I treat myself at meals. I used to enjoy an occasional beer or a glass of wine before Tx but now it just doesn't taste the same so I don't waste my time.
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.
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#60427 03-06-2007 12:37 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Chris, while you are drinking that water, you will begin to notice some "extra" benefits--your hair and nails get healthier and your skin condition improves! If you like tea- the bottled Lipton green tea with citrus is pretty good. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#60428 03-07-2007 07:26 AM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Chris; I don't know if you're a coffee drinker or not. While in treatment I totally lost my taste for coffee, which I was told that a lot of Chemo patients do, but it would come back. Well it did, and I drink coffee with meals just to change things up. (can't stand it hot at this point so I dilute it with ice) Also, as Amy said, tea goes down pretty well. Anything carbonated doesn't work at all for me. Water is still the first preference though because I still seem to require a lot to wash things down. This is kind of strange but milk burns, except I can tolerate it with oatmeal & cereal (which I let get soft in the milk prior to eating). After I eat the cereal I can handle drinking the milk.
Best Wishes, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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#60429 03-07-2007 09:59 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Chris, Much to my RO's consternation, I drank a lot of Coke and it worked well for me. I eventually switched to carbonated water and that works well also. I think that the carbonation helps to loosen food particles and flush them down. You just have to experiment.
Caution: Coke will rot your teeth - so if you drink that you will have to go the distance with impeccable dental hygiene.
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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#60430 03-08-2007 08:17 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Tea totally dries out my mouth! it doesn't do that for some of you? (maybe you have better saliva than I do to begin with).
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#60431 03-08-2007 12:51 PM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi Chris,
Well, in the beginning water is all I could stand.
As time went on I had milk, Bigelow Green tea with honey (warm) I still can not have things to hot. Coffee but with a flavored creamer. Gatorade, and juices came later.
What I really enjoyed after I was 6 months was fudge cycles. They were great. I got the sugarless kind. They felt great on my throat and added liquids to my daily intake.
The green tea is good also for antioxidants.
I am just now able to have a drink or two now and then. I can have a beer or two, or a mixed drink if it is milk based. Other wise it will sting ! I may have a White Russian, Smith & Kearns, Smith & Wesson, Bailey's with extra cream. All of these drinks are made with a milk base.
At 4 months I did a lot of oat meal to eat because it was easy to swallow. It made its own saliva. Ha ha!!
Take care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#60432 03-08-2007 03:39 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Nelie -- I agree with you about tea drying out my mouth (but I still drink a lot of iced green tea, just because I like it).
Water is still my drink of choice with most meals. When I first finished radiation, I couldn't tell the difference between good coffee and rotten coffee, but gradually the taste buds got back to where they could distinguish between the two. I also try lots of fruit juice combinations -- usually ones that aren't too acidic.
I enjoy wine with dinner -- never liked beer, and have had no interest in mixed drinks ever since radiation (I've tried once or twice in 18 years and they burned too much).
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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