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#112930 02-21-2010 09:21 PM
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How long does it take for the taste buds to come back? My husband wanted me to try some spice pepperoni to see if I could taste anything. I tried a small bite and told him there was not taste at all. Something like yogurt taste horrible. Do they come bsck?


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
walknlite #112934 02-22-2010 12:11 AM
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Taste does come back - depending on how much of your oral cavity and tongue you have lost. Some of us are never able to eat spicy things again - i.e. pepperoni, but before you get to that stage you will go through the wild taste stages. I can remember posting how EVERYTHING tasted incredibly salty and not in a good way. That changed to having everything taste metallic and in time (don't ask, I don't remember how long), I think?? my taste has recovered as much as it is ever going to. First time I had radiation I lost my taste for tomato soup (which I used to love), great news was that after 2nd time with radiation - my taste for tomato soup came back. Go figure!

Let us know how it goes.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Pandora99 #112940 02-22-2010 04:15 AM
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My taste is the same as it has been from the beginning. The 1st bite has flavor and the rest just hurt and burn my tongue and have no flavor at all. Too bad all of the bites can't be 1st in line.


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
EzJim #112950 02-22-2010 09:08 AM
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It's kind of weird the things that I can taste and the things that I can't. I can taste chipped ham, and coffee, and coffee yogurt and some kinds of tomato based things. Our local coffee shop has a wonderful butternut squash soup that tastes great to me, and one of the area grocery stores carries a frozen lobster bisque that also tastes good. Some things with small pieces (like bacon bits)don't work at all, even though I can taste them because they move around in my mouth too much. What I find most frustrating is how long it takes me to eat something, especially when I am at work.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #112963 02-22-2010 10:00 AM
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John is currently 10 months out of treatment and his "mouth feel" and taste buds are still not back all the way. He can taste sweets but foods he used to love he can't taste. He used to really enjoy his morning cup of coffee. He no longer drinks coffee at all because it tastes terrible to him. I know it is different for everyone.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
slim #112966 02-22-2010 11:19 AM
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Angelia,

My taste started to come back about 1 month out. I'm 4 months out now and can taste most things. Some things do not taste right yet, like they are missing some key ingredient (vanilla ice cream) and others are now just about the same as pre-treatment. Spicy foods still burn the back of my throat (treatment area) and I eat more slowly.

All in all I am happy with how its coming back. I know it will never be exactly the same but I just treat it as a new culinary adventure. Everything I eat now is new, some old favorites don't taste the same, but I'm finding some things I never liked tast better, so I'm trying all kind of new foods.

Kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #112976 02-22-2010 02:51 PM
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It obviously depends on the targeted radiation field, what type of radiation, how much to exact locations and to some extend how our body handles the damage. That said, for me I saw some improvements in months 4, 5 15 (the largest) and 24. I also noticed a improvement in saliva at the same time my taste improved.


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.
davidcpa #113014 02-23-2010 12:58 PM
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Well, my tongue was the huge target of therapy. I did try some chocolate carnation this morning. I can taste the chocolate, but it doesn't taste very well.


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
walknlite #113018 02-23-2010 03:03 PM
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Tasting ANYTHING is a start.


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.
davidcpa #115297 04-10-2010 02:28 PM
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What is the consensus on taking zinc supplements to help tastbuds come back? I did take zince 3 times a day at 50 mg each. For a short time. I did not finish an entire bottle. My taste came back in 6 months but after 10 months it still is changing. I taste mostly from the back of my tongue and right side. Processed foods a almost always too salty now. Coffee was the first thing I could taste, then eggs, then chocolate. Everything is a little different or I am more sensitve to taste. Also most prcessed foods are apparently spiced with heat, pepper I like but it wears me down trying to get through a meal spiced with heat.


Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
hisnibs #115315 04-11-2010 06:51 AM
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As far as Zinc supplements for taste, my RO said they could not hurt and often help. He did warn me that about half his patients did not notice any improvement while the other half got great results. His rule of thumb was that after half a bottle, if you did not notice any changes, you probably wouldn't, so I too did not finish an entire bottle.
Of course this is moot now with the G tube although I can "taste" the reflux.
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
Charm2017 #115363 04-12-2010 10:26 AM
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Several doctors at HUP swear zinc improves the taste buds. I took 220 mg zinc sulfate for years with no problems, along with vit C, B complex and E. Then I developed a severe case of diarrhea almost every day and it took me a year to figure out it was the supplements that were doing it so stopped them all.

I had most of my taste back a few months after radiation although I did not get sweet back for some time and all continued to improve over the first two years. If things are tasting salty to you, it is probably because salt is the only taste that has come back. I still cannot eat anything that has any heat in it 13 years out but most people do not have that problem.

So try the zinc and see what happens.

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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