#97306 06-13-2009 08:33 PM | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | Looks like loss of taste is an early side effect of the rad tx. What about a constant nasty taste that nothing seems to cut through at all? Glad he's got the PEG tube now, b/c EVERYTHING tastes bad. Rinsing regularly w/the baking soda/salt/water solution, etc, makes no difference. Inevitable part of treatment?
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | 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 | I went thru an early stage where things tasted bitter but that soon transgressed into virtually no taste.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | I had the disgusting taste and it never transgressed into no taste. If anything it got more and more disgusting through Tx.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | My disgusting taste phase also morphed into no taste during TX. Once TX done however, glimmers of taste came back but not the disgusting part. Now, on PEG, so taste irrelevant until I can swallow again. Saliva production is a big factor in taste and as that returns, so did my taste.
good luck
charm
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: Apr 2009 Posts: 104 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | John's got the PEG now but taste not irrelevant as it's a taste that's constant in his mouth whether any food or liquid is in it or not. Of course, anything he does try to eat (pretty much down to Top Ramen) is tasting gross too; he was just hoping that something could cut the continual bad taste in the mouth. It must be a combo of the dying taste buds, mucous, etc.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Has John tried Seltzer water? both times with radiation, it was the only thing that cut my mucous and let me spit it out. This second time around though, it does burn a bit unlike back in 07, still it does the trick for me. Sorry to hear that he can't eat and still has to deal with bad taste. this disease is so unfair !
charm
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | GM
I found it helpful to rinse my mouth occasionally with a cup of warm water and about half a teaspoon of 50/50 salt and baking soda.
But, I didn't have bad mucous or mouth sores, so I am not sure if this would help under those circumstances.
If John can; try sipping heavy juices like grape(try red, white & purple), blackberry, & pomegranate. I found they seemed to help control the bad taste, but even these would taste OK one day, but not the next so I rotated them.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | GM,
Another thing I found seemed to help mitigate the bad taste in my mouth was to chew sugarless gum.
It was hard to find flavors that didn't taste bad, but Extra classic Bubble gum worked for while(first half or so of Tx), then I found Extra Cool Green Apple worked. Juicy fruit also worked, but it wasn't sugarless.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 |
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Hang in there. No taste is better than the metalilc and paper mache tastes that hit me early on. PEG is good.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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