| | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | This last week I have noticed that foods are tasting different or have to taste at all. I am six months out of treatment and over the course of the last six months all my taste buds have returned with the exception of sweet (Not a problem - keeps the weight off). However, bread has just now taken on a bitter taste where as a week ago, it tasted "normal"; and unless I use alot of salt on other items, they have no taste - these are items that just a week previous I could taste. Has anyone else experienced this? I guess I wonder if these ole taste buds are just a moving target for awhile. It is definitely not a big deal, just wondering?
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Your taste buds are recovering, they may not do this at the same rate which may result in surprises.
Even after 2 years I detect changes! (salt and vinegar chips.....), so 6 month is quite early.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Carmen,
First of all, your taste buds are pretty quick healers! After over a year, mine are still not right. From reports here, anticipate up to two years for 'full recovery.'
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | As I suspected. I just need to be more patient. I was just taken by surprise when all of a sudden it was different. It is not a problem as eating at this point something I have to do, so I will just try something different to eat. Thank you!
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Carmen:
Three years later and I can still get different taste sensations from the same foods. I guess it just depends on many things such as hydration, saliva production (If any), rest, seasoning, etc. Not sure any of us will ever understand that one! Hang in there and just keep experimenting.
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 ****
| | | | | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Hi Carmen
Like Steve I am at the three year mark and still find stuff changing taste on me, not nearly as often as in the first year or not as drastic of a change.
Hang in there, I remember at 6 months WILD changes were still occuring .
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Hi Carmen,
Martin has now been out of treatment since October last year. His taste buds had much improved by January then he got a stomach bug and they all went. Then they came back and last week he could eat most stuff except fruit and Sunday night he was violently ill (a stomach bug again) and his taste buds have now regressed. Apparently everything tastes like stamp glue or plastic. I think it's the being sick and the dehydration that caused this, because it's now happened twice. It's a bit like a seesaw it seems to me this taste bud healing.
Just be patient they should come back. 6 months is really not a long time as far taste buds are concerned.
Good luck
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
