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#188002 01-29-2015 04:37 AM
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n74tg Offline OP
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I'm one year post treatment (radiation only) for tonsil SCC.

Of course in the beginning food tasted bad, but it got better, a lot better.

Then maybe 6 months ago it got worse, but not bad.

Then it got better, pretty much back to normal.

Now it's getting bad again, noticeably bad, worse than before. Now basically nothing tastes good anymore, even the things that were tasting pretty good.

I know recovery is a roller coaster, but it seems the hills and valleys are getting bigger, not smaller.

No other symptoms, and all the head/neck/chest CT's keep coming back all clear.

Of course it makes me worry (but only a little).

Thoughts, opinions, anyone...before I request an appointment with my ENT...thanks

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Sorry to hear this Tony. And 9 months post rads, I'll follow your progress with interest. Have you lost saliva? Any change in the swelling in your neck? Have you had a cold or virus recently? A year post rads you must be close to a follow up scope I imagine? What foods are you able/unable to eat? Are you holding weight?

Sorry if that sounds like 20 questions, just looking to flesh out the conversation. Hope it normalises for you soon.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Hey Tony! Glad to hear that your scans keep coming back clear. I hear you about the roller coaster taste buds. I know when I'm dehydrated my taste is off, when I taking antibiotics, and when my creatinine levels (kidney) go up, besides taste being numbed from hot food, so I eat mine warm. A sinus infection, other infections can too like OzMojo mentioned, and thought I read your need to clear yours often? Thrush? Zinc helps some with taste, but I never used it for that reason. Maybe try different foods, go to a buffet. As you can see its hard to say, taste, smells are complicated.

You can never go wrong with seeing an ENT for any reason, even if it's just to hi smile Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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n74tg Offline OP
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Oz - to answer your questions.

No problem with saliva or dry mouth. I think all salivary function returned to normal.

The sinuses still get a little dry, but a saline sinus wash a couple of times per day fix that wonderfully.

There aren't any foods I can't eat; hot, cold, spicy, savory, sweet; I can eat them all. It's just that many of them don't taste very good.

Weight stays constant, neither gaining nor losing. I accomplish that by avoiding lunch most days and then reasonable serving sizes for the other two meals per day.

I guess it is what it is

T


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Mar 2014
Posts: 286
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Interesting. The taste recovery for me has been fairly linear, and I'd say 80-90% back to the old normal. I struggle with very dry things, like roast breast chicken, I can't tolerate anything spicy, and I have no interest in anything sweet. Not sure why, I've just gone off sweet things like chocolate. Weight is steady.

As Paul suggests hit the buffet and try a range of things. Hope you find something you like.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Nov 2009
Posts: 644
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It sounds strange because we expect the sense of taste to return gradually. I met a guy at my support group who regained his taste two years after radiation quite suddenly but says he has very little appetite. I think he had tonsil cancer and it seems that tonsil people have radiation where it hurts the most.

This used to puzzle me because the tonsil - in my childhood - was a completely dispensable part of the body and one that doctors frequently removed in the 1950s and from very young children.

I've tried to do some research into taste bud recovery but haven't found a site which presents the information in a manner I can understand.

My own taste started to return 10 days after radiation ended and is now almost 100%. Savoury foods are often too salty and sweet things taste better, alas. I can even differentiate the different fruits in a smoothie.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Regarding the return of taste.... As my husband lost taste, things began to taste "vile" to him - even water! So.... as the taste buds come back (he's got 7 more rads to go!), does one go thru the "vile" period before things taste normal again?

Just curious, as I am trying to figure out what eating is going to look like once he can. Thanks, y'all!


Wife to patient with poorly differentiated, non-keratinized, squamous cell carcinoma in one tonsil. Stage 4. T2N2 with metastisation to three lymph nodes of the left neck.
Dx Nov '14
Tonsillectomy and neck dissection Nov '14
Chemo (cisplatin) & radiation started 12/10/14
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Sorry Tony, not trying to hijack your thread!

MrsChickenPam, most patients will experience everything tasting terrible for a few weeks after finishing rads. Some will have issues relearning how to eat properly again, plus having a lack of appetite makes it difficult. Recovery is full of ups and downs and is a long, looonnnggggg road. One day something will taste great and the next day (or sometimes after only a couple bites) it will be horrible again. Most patients will begin to get their sense of taste back around 6 weeks post rads. A full recovery can take up to 2 years after rads. It cant be rushed, and for many patients recovery is a frustrating time.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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n74tg Offline OP
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MrsChickenPam - I've had several bouts with the vile tasting food phase. The worst phase was during treatment, others were not nearly as bad.

I drink my coffee black, but I swear it tastes slightly sweet about half the time.

Milk sometimes tastes about half bad, but that doesn't stop me from drinking it (or using it on my cereal).

Steak tastes great, chicken usually tastes bad unless I have some gravy or sauce with it.

Beer tastes great though it didn't before.

Food taste comes and goes, here today, gone tomorrow. I thought it would all just slowly get better until back to normal. Sorry, it doesn't work that way.

... Still enjoying being on this side of the grass.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Mar 2014
Posts: 79
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Hi Tony , I'm with you on the taste issues still having very altered taste myself.
Strange what you say about coffee sometimes tasting sweet the very same thing happened to me I was adamant Mike had put sugar in mine by mistake . Chicken beef steak not much taste , gammon bacon salty meats much more palatable . Veggies taste pretty good specially mushrooms , sweetcorn, courgettes . Milk and eggs okay for me . Sweet stuff still craved but very disappointing . Also like I've read on here before often the first mouthful is better than subsequent ones .
Take care Di


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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