Did any of you lose your sense of taste or smell from chemo or radiation? I lost both and have not yet gotten them back. It is now over two years post radiation/chemo, and although I am feeling good, good energy, strength returning, etc., my senses of taste and smell are still missing. I did have a ton of radiation (60 treatments) and buckets of chemo. Still, I had hoped to get smell/taste back, but didn't. The neuropathy is not all gone yet either, numbness in feet and hands still lingering. Anyone else have this experience? Did you lose yours for a bit and then get it back? Curious. Tom

Hi Tom,
Like you, I had no surgery. I had 2 Cisplatin infusions and the maximum amount of radiation including the boost but had 35 fractions (rather than 60 - I take it you were getting 2 a day?). I have regained my sense of taste, salivary function etc., swallowing is as close to normal as I can remember. They seem a little surprised everytime they ask me about my taste buds and I tell them that everything tastes pretty much as it did. I did have IMRT so I suspect that played a role. I never had problems with sense of smell. The taste buds started to return to normal a few months after radiation ended. It took 6 months+ for full recovery. Salivary function took a year and a half. I haven't had problems with nueropathy. Some chemo cocktails can exacerbate that I am told.

Hi Tom,

There was an article in teh Washington Post Health section a few weeks back about a person who was born with no sense of smell (and hence, little taste). That article prompted a series of letters back from people who had lost their senses of smell and taste, and many had found some relief. There were several who said they took zinc supplements and this helped; some studies have shown Zn to be crucial to certain enzymes associated with taste and that Zn in "excess of normal requirements" helped restore taste to radiation patients. Another person wrote that he had been helped, after years of problems, by acupuncture -- and after only a few treatments. So you might consider trying these remedies. Acupuncture is also supposed to help with neuropathy -- your doctors may be able to recommend an acupuncture center or clinic.

Gail

I have had decreased taste and smell from my IMRT radiation. I would say I am about 50% which is now 1.5 years from treatment. The taste ranges with the type of foods but I don't seem to get that extra flavor of most foods I use to get. My smell was only about 60% before so I was use to that, but the smell even has gotten worse too?

My ENT mentioned that I might permanently lose some tasting, esp relatively dry foods like a steak -- The problem is that without enuf saliva to move the taste and smell particles around and receive/assess them, things will be relatively flat, which makes a lot of sense to me.

Based on the above, plus the apparent link to alcohol and SCC, I have decided to trash my plan to become a professional winetaster

Pete

I definitely have an imparied sense of taste (but I'm only 6 mos from the end of rad.) but I have found that my sense of smell, which was always on the sensitive side has gotten even MORE sensitive. I can't taste choclate right but it smells better than ever (and no calories when I smell it!)

Good descision on your choice of future vocation Pete!
Two years out my hubby is eating and enjoying most food groups with the help of a lot of water.
His taste is questionable.... so I have to be cautious when he cooks, he can be a bit heavy on the flavors!!

Cheers
Marica

I also have an impaired sense of taste. I've been done with radiation and chemo since early January. I think it's come back as much as it's going to. Like Nelie, my sense of smell is very sensitive. During radiation was when I really noticed. Even as my taste has returned to a certain degree, my sense of smell is stronger than it ever has been.

John

I was told I could loose my sense of taste but I was lucky and it didn't change one little bit but I am still having problems eating spicy foods and fizzy type drinks. It's not that I can't eat or drink them but if I do I know about it for maybe a week or so afterwards, they make my throat feel so strange and so that then in turn makes me worry that the cancer has returned. On my last check up I asked one of the cancer nurses whether eating and drinking that sort of thing could do any sort of damage or cause the cancer to come back. She said that it wouldn't do any harm at all just be uncomfortable for me and my throat reacts that way because it's still healing from the radiotherapy and it could take many months before it's completely healed. Sorry if this has drifted off the original topic... uksweetheart

I found that after my radiation and chemo, I couldn't eat anything that had any type of spice to it. I definitely don't drink carbonated drinks any longer. I did after my surgery and prior to my radiation and chemo. Just can't handle them now for some reason. And I finished my tratments in January of this year. I've said this before, but in a lot of ways, I eat healthier now than I did before all of my problems started. I've been able to put some weight back on as well. Slowly, but puttin it on none the less.

John

Hi,
If you are having problems with carbonated drinks but like the taste, open them up and put them back in the frig for an hour or so. Or drink fountain sodas in the cafeteria rather than bottled. Less fizzieness. Or pour over ice and wait until the bubbles go away. Right after radiation, I found frasca, ginger ale, etc. tolerable. Experiment and see what works for you.

Take care,
Eileen

Thanks for the advice. I've basically tried "all of the above". I've been purchasing fruit nectar, such as peach, papaya, and strawberry. I put a few ounces of ginger ale in it and it really hits the spot.

John

I'm about 6 months out of radiation tx and I too have lost some taste.But like the others my smell sensitivity increased like a bionic nose. Spicy foods i have to watch for, cant even hardly handle certain bbq sauces. Saliva is 40% returned so I do use alot of water or pepsi when i eat. Steak and pork chops are hardest to swallow but yumm the fried chicken (thighs) is going down just fine. :-)

My ENT mentioned that "dry" food like steak would probably not taste all that good when all is said and done.

A friend who has been thru similiar treatment a couple of years ago reports that he cannot taste red wine.

Pete

Peg tube users: Do you "taste" the foods you pour into your peg tube? Even though I can only vaguely taste anything by mouth, I can still get a very distinct sense of taste in the back of my throat when I pour food into my peg tube.

Said another way, I can only vaguely taste the strawberry Ensure when I swallow it, but I get a very distinct strawberry 'sensation' in the back of my throat when I pour that strawberry Ensure into my peg. Am I halluncinating this taste sensation? How can something poured directly into my stomach give me a taste in my throat??

Did my IMRT rewire me, or am I just strange? Tom

Tom, well I'm strange too then. I get a slight sense of taste (not as strong as if I tasted it though) from what goes down my tube. I suspect it actually isn't taste from the taste buds but odor (which we sense as flavor when it's coming from the tongue area)

Nelie

Tom, I am hoping to find a way to bring my ability to taste things properly. I own a restaurant and still like to cook. I can taste, but not to the degree I'd like to. If anyone has some advice, I'd appreciate it. I'm looking into Zinc Sulfate to see if it makes a difference. I'll let you know how I make out. Tom Roussell

Valentines day I will be 6 years from my diagnosis. I recieved 60 rounds of rad and Cisplatin chemo. I have taste loss that has not changed for 6 years, and the only time I produce much saliva is when I am in the dentist chair, it appears to be related to pain. I will givethezinc and accupuncture ideas a try!

Chris - i know this should be a new thread but it's wonderful to hear from someone who is a 6 yrs survivor of stage IV tonsil cancer. Welcome to the forum.

Mary