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#173745 11-10-2013 04:07 PM
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I am in 4th week out of 6 weeks of radiation. Just wondering if anyone has any suggestion on how to remedy the horrible taste resulting from radiation. It is so bad I cannot eat.

I am being treated for squamous cell tonsil cancer.

Thanks.

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Not sure if you are in the same boat as me for treatments. I'm getting chemo and radiation concurrently. The radiation definitely reduced my ability to taste. I thought it was also to blame for foods tasting terrible. I found out, however, that the chemo was the culprit for making foods taste bad. It was week 4 for me also, which happened to be the week after my second chemo treatment. Later that week, after flushing more of the chemo out of my system, food started just having the reduced flavor again. Hope it turns out to be the case for you too. I know I was devastated when butterscotch pudding, one of the few foods I loved that I could still eat, tasted terrible.


Dan

Stage 4 SCC on right underside of tongue

DX on 7/19/13 at age 29, no tobacco, light drinking

Partial Glossectomy/reconstruction/neck disection 8/20/13
Temp Trach, PEG tube

4/59 lymph nodes cancerous, 1 with extracapsular extension

Chemo - Cisplatin - 3 treatments started on 10/01/13
Radiation - 33 treatments started on 10/02/13
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Not much until after radiation, other than maintaining good oral care, rinsing, hydration, taking care of any oral infections. Chemo and radiation have just about the same side effects, minus the neck burn, but chemo can even cause burns too, and are more acute, than some radiation effects that are longer term, but so can chemo sometimes be long term. Sometimes you can develop taste and smell aversions associating the nausea from treatment with the last food you ate, and reason some centers give out strong drinks, candies as a scape goat. It's best to eat familiar, maybe not your favorite, non spicy, not hot, non acidic, not sharp textured, not strong flavored foods.

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
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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
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02/19 Finally Cancer Free Took 10 yrs






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Hi Ridge:
I developed a mouth infection after surgery, prior to radiation start. Yes, it had a horrible metallic taste. At first we thought it was strep, but antibiotics didn't cure it, then we thought it was viral in nature and you just have to ride that out.

Gargling with salty, baking soda water helped, but only for a minute before it would come back. Regular mouthwash and sucking on a cough drop seemed to do better than anything because the drop would take 20 minutes to dissolve, that brought 20 minutes of relief.

Sure hope I don't get another dose of this when I reach 4th week of rads, I'm starting week 2 tomorrow.

Try the drops.


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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Well, I had a feeding tube and only ate orally so I wouldn't lose the ability to eat. I was only able to eat vegetables, like dry salad, cucumbers, tomatoes and celery, also angel hair pasta with butter for weeks. Not sure if you have tried those foods yet. Drinking water was the absolute worst! By someone's suggestion here on the forum I switched to Fiji water with ice cubes made with the Fiji water and was able to handle that.
Also by suggestion here I used a water pic with the spoon attachment, which got rid of some of that mucous and refreshed my mouth for awhile. However, none of that changed the taste of food. I think it's just the taste buds and mucous messing with your taste.
Hope you can find some kind of food that works for you.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Ridge,

Unfortunately just about all of us had to endure the loss of taste as part of the radiation but you MUST and I repeat MUST consume at least 2500-3000 cals and 48 oz of water EACH AND EVERY DAY from now until at least the first 12 months post Tx. If you don't then believe me the lack of taste will pale in comparison to the other troubles you will have.

Most everyone had a significant amount of their taste return post Tx but it can take 2 years so please just get use to eating to survive for a while.


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.
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I would suggest using a water pik on the lowest setting to help get anything you may miss when brushing your teeth. You would be surprised at how much is missed! Add a small amount of no-alcohol mouth wash to the warm water and that should help. Does your tongue have a whitish coating? If so, that could be thrush, your doc will need to prescribe antibiotics. Also just in case of something being medically wrong, change your toothbrush, you dont want to carry anything over day after day.

Every single day you must take in a minimum of 2500 calories and 48 oz of water. If you skimp here and there you are setting yourself up for malnutrition and dehydration which will result in a hospital stay. No matter how bad the taste gets, EAT and DRINK.


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
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OC 3x in 3 years
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I had a horrible taste in my mouth too around 4 weeks in - it was not the metallic taste I had anticipated; however, it was more of a sour taste. It drove me absolutely insane - maybe one of my worst side effects. There wasn't much that seemed to help me... I did start sucking on some milder mints though that didn't irritate my mouth. I can't remember the brand I used, but I would give it a try if i were you.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
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[quote=emilyp]I had a horrible taste in my mouth too around 4 weeks in - it was not the metallic taste I had anticipated; however, it was more of a sour taste. It drove me absolutely insane - maybe one of my worst side effects. There wasn't much that seemed to help me... I did start sucking on some milder mints though that didn't irritate my mouth. I can't remember the brand I used, but I would give it a try if i were you. [/quote]

Ridge and Emily,

Here's some observations in no particular order;

My dentist clued me in to the use of Xylitol (a non-sucrose based sugar) in dealing with Dry Mouth. She sells Theramints at cost, and they are effective as long as they are in your mouth. Which is to say, since they melt away quickly, not long.

Icebreakers brand mints are also good for this, their "Frost" mints are the longest lasting I've found.

But the most effective thing I've found is Chewing gum sweetened with Xylitol. I buy three-paks of Trident Tropical Twist and love it. One piece can be chewed for more than 4 hours without loosing it's effectiveness. Biotene gum, which the medico's like to suggest, simply cannot compare!

As for the taste, I suggest you try coffee with a packet of Swiss Miss cocoa and a single packet of Splenda. I started this because I could actually taste the chocolate and the sweetness at a time when I had lost nearly all my sense of taste. My sense of taste is about 60% these days, but I still make a couple of cups of the "Mocha-Java" mix daily.

Good luck, and remember that this will all pass, so don't get hung up on how bad it might be at any moment in time.

Hang in, it's going to be just a memory before long.


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!

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