| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Is it normal for a change in taste to occur 20 months after treatment? I have noticed a change in the way things taste.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Angelia:
From my experience, it is. I tasted metallic during and about a year after treatments (ending in 2/08; then everything started tasting salty - no other taste, but salt. And then, almost 2 YEARS ago, I developed a sweet putrid taste that is with me 24/7 and makes me sick. I can't find any other oral cancer patient who has just sweet. So, I'm having all sort of tests done to see if it's not even related to treatments. What sort of taste do you have?
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I am not sure what it is. One day I could eat peppermint candies to help keep my mouth moist, and then today I got one, and it tasted nasty, and now my biotene toothpaste is tasting weird. I can not explain it, it is just that things are not tasting right all of a sudden.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | 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 | For me positive changes in my saliva AND taste came at 4, 5, 15 (the biggest by far) and 24 months post Tx.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Saliva wise I'm okay - green tea dries me out a bit for some reason but other than that I only get dry after an extended round of conversing. And a swig of water takes care of that. - more and more I am regaining my taste. Sweet visits occasionally salt too, but natural foods in their fresh state are still the most flavorful. I always add a dab of olive oil if saut�ing - but now steam most of my veggies (even potatoes) because it doesn't kill the nutrients like boiling does! Meat i don't do of course, and grains I tend to add a veggie bullion or toss in veggies and a little herb, my mouth STILL hates SPICY - which is fine, and tomatoes are only tolerable if uncooked and in small amounts!... But slowly my taste is returning, yesterday the first few mouthfuls of my morning smoothy actually tasted like my taste memory. I do find my buds get overwhelmed after a few bites - depending on the temperature and intensity of flavor - lukewarm, and ala natural are still best! Julianne - sorry you're having issues- have you tried water piking (or rinsing with a mild diluted mouthwash) after each meal?
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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