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Taste

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

Hi everyone it has been 11 months since treatment, and my husband still has no taste, can anyone give me suggestions on how to get it back.

Thanks

Linda

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

I tried Zinc supplements!! I got my taste back after 6-7 months; not sure if that was the reason. ??

Charles

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

Mine came back within a month or so, not like it once was but taste nevertheless. It keeps improving so give it time.
John

BrianKrashpad's picture
BrianKrashpad
Posts: 188
Joined: Jan 2011

I've always heard of the return of taste as being something that will either come back on its own or not. Mine came back within a few months, but different people's sense of taste responds differently, and the dosage and types of chemo they received can be different too.

Zinc is a new one on me. Never heard of that before.

Best of luck.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I'm only 14 rad sessions in and my taste and saliva has gone. What little bit of saliva
I have tastes salty so everything i put in my mouth tastes like salty sweat. Water tastes
So bad I don't even want to drink it. My throat is not to bad but its the Uvala and the
Sides of it on the pallet seem burned white. They are so sore it makes eating anything
Almost impossible, trying to get things to pass is murder. I'm determined to go through
this without a PEG tube. I got some Magic Mouthwash but that did nothing for me.
Anyone have any suggestions?

God Bless
Tonsil Dad.

Dan

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

Your comment on Magic mouthwash blows my mind. When I first used it, it numbed my mouth and throat so thoroughly that I couldn't swallow for about an hour after using it. I actually had to be careful not to get exposure to the throat, or I couldn't eat or drink afterward. The formulation is not a standard thing, though, so maybe yours was different than mine. On the label, does yours contain 2% lidocaine? When it got to painful to chew solid food, I simply switched over to liquids. I'm still on liquids, about a month out from rads now. I'm slowly improving, but still not quite to where I want to test my mouth with solids yet. I've done fine on liquids, pushed the calories up to about 3000/day, and I haven't really lost any weight.

Pat

Redwngs
Posts: 14
Joined: Feb 2012

Ensure plus and Boost are your greatest friends at this point. I too have elected not to have Peg tube and I am 12 rad sessions and 1 chemo session in. Another thing that will help is high calorie/protein shakes. You can Google recipes.

Mike

flaladee's picture
flaladee
Posts: 15
Joined: Mar 2012

Dan - You may need to break down and get the PEG tube...it really is not that bad and it maintains your health. Believe me, I fought using it and ended up in the hospital with anemia AND dehydrated, was in there for a week at Thanksgiving. I ended my 35 RAD treatments and 3 chemos on December 9th and JUST last week got my tube out. If you have the sores in your mouth it is pretty impossible to eat plus it is going to get harder to swallow meds, food, etc. and the tube comes in handy for that. I lost 60 lbs, even with the feeding tube, but like I said I fought it in the beginning....I now living on Boost shakes to maintain my weight and because my taste buds have not come back yet and food tastes gross to me. Best wishes on your treatment, it will be okay. I am now cancer free so it was worth it.....but needless to say, once my taste buds come back I will NEVER drink another milk shake IN MY LIFE :-)

aprilshower55
Posts: 23
Joined: Mar 2012

hi dan,
july 1 2012 i had 35 days rad, and 3 chemo. i had peg in 10 days after rad, and just removed in jan 2012. the peg was a life saver.i was not able to take drink or take my med, i crushed the pills mixed with water down it went. my sister-in-law also refused she almost did not make it. your throat will and mouth will only gets worst as you have more rad. good luck.
npc survior

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Linda ~ best I advise I can give you.....

Like mentioned some have taste come back within a few months, others longer. For myself I started getting some taste back within a month or so. But it took nearly two years to completely come back as before.

Charles ~ I didn't use Zinc, but I have heard of it being used, not sure of any actual studies though.

Tonsil Dad ~ though I didn't have a PEG and it was never an issue for me. I'd highly suggest that between not getting in enough nutrition without a PEG, and surviving with a PEG. That you'd do whatever it takes to get the calories in....in other words, if that means getting the PEG, do it.

But since you asked...

My regime' was to have everything setup a head of time. Even though I had the thick numbing solution (mine was called Larry's #2), I rarely used it after the tonsils came out. I had liquid hydrocodon or oxicotin....

I'd take a teaspoon full of the liquid hydrocodon, a glass of water, 1 - 2 cans of Ensure Plus, half glass of water, a few DelMonte sliced peaches (for the swallowing muscles), a crushed up percocet, and the other half glass of water.

They did give me Roxanol (liquid morphine), for me it did nothing for the pain and it made me nauseaous, so I tried it twice an went back to the percocet, oxicotin or hydrocodon tablets.

That was my regime, usually three times a day for several weeks...3-4 weeks during the end of rads, then 3 - 4 weeks post rads.

Though I had minimal to no taste, that wasn't a factor...survival was the objective. You have to get calroies into you whether you can taste or not.

You mentioned eating anything is hard to achieve...that's why I went strictly to Ensure (other than the peaches)... Ensure at 350 calories/can gave me more bang for the buck than any food I could eat, and a lot less irritation to endure going own the throat.

I had minimal pain considering, for me, I seriously doubt that I would have been any less burdened with a PEG.

But if I couldn't have maintained as I did, the PEG was an option that I always knew was out there.

Best,
John

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

After 16 years my taste has never come back like it was before. Things taste differently now. Just takes getting used to.

I agree on the peg. I didn't get one (it wasn't even offered and I didn't know about this board) but I know I would have been better off if I had.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Thank you to everyone for your support and info on the peg. I understand that
The name of the game is survival first and I will do what it takes to do that. As of
Today I am 1 treatment over 1/2 way (16 more to go) and I can still eat some solid
Foods with only a little pain, the problem I have is no saliva or taste so the food seems to
Clump and it is much harder to swallow. When I drink water with it, it now tastes disgusting
as my mouth is producing some kind of salty secretion which makes everything I put in
My mouth taste like a boxers bucket of spitout ( not like I really know what thats like).
I can still swallow my vitamins and nutritional pills, again with a little discomfort I'm drinking
Ensure / boost drinks, making protien shakes, proberbly not enough water because like I've
said before it grosses me out.
I just got the liquid hydrocodon and another batch of MM and it is 2% lidocane (still doesn't
Numb the mouth)
So right now I'm doing ok but I suppose the worst is yet to come so they say.

God bless to everyone,

Tonsil Dad
Dan

IAmStrong's picture
IAmStrong
Posts: 44
Joined: Feb 2012

I did a lot of research on this and found studies and reports from other head and neck oncology centers, a big recommendation was zinc tablets, 300 mg a day,. Patients talked about seeing their taste buds reappear before their eyes. So, I bought some. My taste is markedly improved! Also, I had the same salty tasting issue. I made my water palpable by adding a few drops of lemon or lime juice. The Only things that allowed me to drink water.

Best to You!

donnahamblin's picture
donnahamblin
Posts: 47
Joined: Oct 2011

I can't wait to tell my husband about the Zinc. He has no taste. Says everything tastes metallic. He will force a small bowl of cereal down in the morning and I tube feed him all day to get the 2000 calories down him so I hope the Zinc will work.

Love this site!

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I have no taste buds and I'm looking for something to help with them. I hear all
About these zinc supplements but I am skeptical because after reading on zinc
Tolerable intake anything above 40 mg per day can suppress the immune system, lower
HDL (good) cholesterol and give you a copper deficiency, and thats at 100/300 mg
Per day. So I'm in two minds wether to try it or not.
Has anyone else read about zinc and side effects?

God bless
Tonsil Dad

Dan.

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

I too had the metallic taste especially with red meats, I also stopped using my silverware cause it left a taste and used plastic utensils, plus anything that came out of a can I didn't eat either. I'm just a bit over 2 months out of treatment and my taste is slowly coming back.

Gotta agree about this site...so much information

Linda

buzzbomb
Posts: 3
Joined: Mar 2012

I'm almost 5 years out, and have virtually no taste. A strange experience: if I haven't eaten in a while, the first bite has some taste, after that nothing. I've blind taste tested this, and when I ask Drs about it, they look at me as if I'm hallucinating. I'm afraid to take a lot of Zinc, so if anyone has specific info about dosage, please let me know.
Regarding saliva, I had to go thru hyperbaric oxygen treatments (called 'dives', usually used to treat the 'bends') to avoid osteo-radio-necrosis (didn't work), and a great side effect was my saliva increased dramatically.
Another note about food/peg: a chiropractor, who specializes in nutrition, designed my diet to replace Ensure, as he didn't want me to use soy or dairy. The base was Rice Dream with a rice-based protein powder. The MD's nutritionist examined the formula and said it was better than Ensure, but it was a little more time-consuming to prepare.
My biggest complaints about my treatment involved lack of info about 'trismus'...make sure he uses a 'Therabite' every day, as often as possible. Google the terms if not familiar.

Good Luck!!
Buzz

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

Has anyone else tried the zinc, and how much do you take? Has everyone got some taste back, my husband can't taste. He says he hates eating.

Linda

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Not to be a spoiler, but for those of you that are still in treatment....

Make sure that before taking anything like ZINC or other non-prescribed remedies, vitamins, minerals, and or supplements...that you go through your MD's and ask there take on it.

Many things are not recommended during treatment, so better safe than sorry.

Not saying that the medical community knows all, because many that have actually gone through treatment discover things that the MD's haven't heard of.

But, I'd presume anything that has been studied and actually works safely on the majority, would be prescribed or at least recommended.

Best,
John

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

That is excellent advice. My medical oncologist told me not to take anything except my Lipitor during treatment, especially antioxidants.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

As you know I take a lot of alternative products, but I have shown these products
to my Rad Oncologist and Nutritionist and they said that these are ok ( The ones for
my immune system) but not to take the super antioxidents and high doses of
Vitamin C. So to anyone taking supplements or any kind of alternative pills check
with your Docs first, because the last thing you want is for them to interfere with
Your treatment and cause problems.
Better to be safe than sorry.

God bless
Tonsil Dad,

Dan.

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

I too agree with the above statements. As I started my RT, I asked about a moisturizer cream I use after bathing. My tech told me to not use it until it's cleared by the Dr. She said it may contain metals. Sure enough, I checked the ingredients and it had iron in it. Didn't even bother to ask the Dr., just asked them what to use for the rad burn.

Tommy

Zorba
Posts: 5
Joined: Dec 2011

Mr. Tonsil Dad,

I am 10 weeks post Radiation for Stage 4 SC. Ca left Tonsil bed with mets to left neck. Operated at Mayo Rochester had Robot surgery, told had great results? However I still have significant pain in the tonsil area and taste / saliva are still nonexistent. My entire body is generally sore especially my spine and ribs, anybody experienced these issues this long after treatment?

Many thanks, I have learned a lot from the many responses on this website.

Zorba

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Zorba, while that sounds like a long time to heal normally. I wouldn't necessarily say it is under the circumstances.

As for taste and saliva, it definitely isn't a long time considering. It took nearly two years for mine to nearly entirely return. Though I did start having improvement with in a few months post treatment. For me that was STGIII Tonsils and a lymhpnode, tonsils out, chemo and rads.

If the pain is too bad or if nothing else to ease your mind, maybe you should communictae and consult with your MD's.

Best,
John

francma's picture
francma
Posts: 60
Joined: Jun 2011

If your doctor advises a peg tube, I would highly recommend it. I am 13 months post treatment. For awhile there, I was unable to eat or drink anything. It took along time to get that confidence back and to be able to eat comfortably. I am a small person so fortunately I only lost 7 lbs, and that's with the peg! I'm sure I would not have lived without it. I've eaten normal amounts of food now since 1 1/2 months ago. Will finally have it removed next week.
I did read that zinc could help and bought it. But foolishly I didn't give it a try as I'm afraid of taking anything. My doctor didn't think it would help, but I say try it. It takes alot of patience and he needs to retry things every week. I definitely felt the frustration. It will come back! My doctor highly recommended Carnation Breakfast drink, if not, ensure. Prayers sent for your husband.

Fran~

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Just based on your picture, you seem little like me! I am 2 weeks done with RT and 4 weeks done erbitux. I've lost almost 11lbs and that is also with a tube. So far I'm having a hard time putting it back on! Any advice on how you got your weight back? Funny people think thin people have it so easy but I think not! I always had to work on keeping weight on and now it's even harder!

Paintraind1
Posts: 3
Joined: Jul 2012

Linda: Hello my name is Jerry Owens. when my treatment was over in Feb.2001 I couldn't eat for 9 months,but the Lord mercy keep me full! I can't hold down any foods or liquids . When I final began to eat,my first meal was a bowl of egg drop soup which took me 5 days to complete.Also ice cream goes down well regardless of the taste. I am praying for you guys, hope my experience help some.

TheDane's picture
TheDane
Posts: 27
Joined: Oct 2010

No taste? Wow - I'd love that!
I'm almost 2 years out and everything burns and tastes too strong.
NO taste would be my dream. Then I could just eat without pain.
ZINC- my experience has been that it lessens "Bad" mouth tastes but has not done anything to regrow taste buds or anything like that.
If your husband's experience is simply muted taste or lack of taste, then I envy him.
But if food tastes BAD - then that's a hell I am very familiar with.

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