Taste & Saliva

I had hpv /base of tongue cancer.I am 10 months out of same treatment as you rick,still waiting for taste to come around.The taste thing doesnt bother me as much as the burning/pins and needles feeling on my tongue when i eat,did you experience that and if so has it gone away?

koolhandwv said:

10 years out

I had 35 rads, 4 rounds of 8 hr cisplatin treatments and a radical neck dissection.   My saliva and taste came back within a few months but as mentioned by the other posters, it wasn't quite the same.   My taste changed fairly radically.  Things I used to really enjoy no longer had the same appeal and other things which I'd never liked were now preferable.   My saliva is pretty decent, but, I sometimes get wrapped up in what I'm doing while eating at my desk at work and run out of whatever I'm drinking.  I've had several choking instances where things just got stuck.

I also was fortunate to lose a lot of weight.  In some ways I came out so much healthier after cancer which is weird feeling.  I was 340lbs at my heaviest and on blood pressure meds. I lost 60lbs then and further 30 since and no more meds.

I've never had pins/needles when eating.. but over the last several months I've experienced charley horses.. for lack of a better term on my tongue.  I think it's related to the scar tissue from my treatments.  

If you find things are getting stuck too much you may want to check into getting dilations of the throat. One of these times something may possibly get stuck and you won't be able to move it one way or the other and will have to go to the hospital to get it removed that's what happened to me. You would see a Gastroenterologist. They stretch your throat a little at a time. I had four of them and it solved things getting stuck and there were some pills I could swallow again. Here is a link for an explanation---

https://www.asge.org/home/for-patients/patient-information/understanding-eso-dilation-updated

You will probably have to copy and paste the link in your browser. Take Care-God Bless

I literally just found and logged into this site specifically for this subject. There are 2 aspects of this I wanted to post and share about: One was, for me, the inability to eat during treatment due to loss of taste; and the other was information I have come to learn in regards to loss of taste.

Regarding the inability to eat - in my case I had the HPV related tonsil squamous cell carcinoma that had spread to the lymph node. I had the tonsil removed followed by 3 weeks (15 sessions) of the 35 rad (I believe) radiation and 2 rounds of cisplatin (one at the beginning and one at the end, each round over the course of 2 days). Somewhere around the 3rd week I could not eat solid food at all, and fluids were difficult. Anything I chewed turned into tasteless sawdust in my mouth. Anything soft such as yogurt was simply disgusting. And in all cases my body rejected it, meaning I spit it out. It did not cause nausea or vomiting, it was just physically repulsive - more on that in a moment. The best I could do was shakes made with milk, peanut butter, banana and chocolate syrup. None of those flavors were really present in the shake, but rather it was the least offensive thing with some nutrients I could get down, and even then a 16oz shake would take hours to finish. Even water was a struggle to sip. 

My health care team kept insisting that my problem was the nausea and kept prescribing me various anti-nausea meds despite me telling them that I did not have any standing nausea. It also did nothing to alleviate my inability to get food down - which I think is much different than keeping food down. It was starting to become a point of contention - especially because of the rapid and continuing weight loss -  until I learned some new information. But before I go into that, does/did anyone else experience anything similar in terms of being unable to get food down? While I understand side effects can be varied by individual I have to believe I am not alone in the difficulty I had, and I believe that while the health care teams do a great job with SO much in dealing with the cancer and many of the side effects, my experience with this specific side effect left me with the impression that it is not something they fully understand. I did not understand it either until I was given some information on the science of taste by someone who is an expert in the field. Below is text from an email she shared with me:

First a bit of education. There are 2 senses you use when eating: smell and taste. 

 

 

SMELL

 

Smell comes from your nostrils (orthonasal) as well as from inside your mouth (retronasal). 

 

The number of smells we can detect is endless. And most of what you think you "taste" is actually smell. The smell of lemon, chocolate, coffee, onions, etc. are what makes these foods unique. Smell is critical to the enjoyment of food. Smell is hard to do without, but it's not traumatic. And there are lots of ways you can lose your sense of smell. In fact, it's common for people who get head colds or suffer from pollen allergies to have trouble with smell. Chemo/radiation can temporarily kill smell, but it usually comes back.

 

Just to confirm, can you close your eyes and have someone put an open jar of an aromatic spice under your nostrils (like cinnamon, cumin, basil, garlic powder)? If you can detect what it is, that's good because it means your sense of smell is coming back! That's going to make you want to eat more because at least you'll get the smell sensory information from food/bev. 

 

Let me know!

 

TASTE

 

Taste comes only from the surfaces of your mouth (tongue, roof, inside cheeks, back of throat). Food has to be in contact with your mouth surfaces for you to TASTE it. You can SMELL food without putting it in your mouth.

 

There are only 5 tastes we can detect in our mouth. They are sweet, sour, bitter, salt, and umami. They are present in many foods in different combinations. Without taste, food is confusing to our brain. And it sounds like you've lost your sense of taste, and that it hasn't started to return to you yet.

 

Losing your sense of taste is VERY traumatic. It happens VERY rarely. Without taste, people literally stop eating. That's because our sense of taste is critical to our survival. Bitter tastes tell us that food may be poison. Sour tastes tell us that food may be spoiled. Without the ability to detect these things, your life is at risk (from poisoning or food poisoning). This is why you don't want to eat. It's protective. Your body is working like it's supposed to!!

 

Unfortunately, the only thing I've heard about losing your sense of taste--which almost NEVER happens except when triggered by drugs, chemo, or radiation--is that there's not much you can do except stop the treatment. And it sounds like you've done this. Thank god. 

 

Can you do me a favor? Please have someone soak a Q-tip in vinegar and touch it to places inside your mouth. Also do the same thing with some really salty water.

 

Let me know what you get!

 

 

FEEL

 

Lastly, let's check your sense of touch. Try putting cayenne pepper (best because it doesn't have tastes or smells), sriracha, tabasco, or something spicy in your mouth. Please tell me if you feel anything. That way I can tell if your trigeminal nerve is also on the fritz.

At the time I received this info I was about 4 weeks removed from treatment and my sense of smell was returning, and I did indeed start drinking lemonade. I also used this info to seek out dishes that would have some chance of going down. I ended up eating fully cooked pasta (not al dente) with a bland type of oil/butter sauce. While the dish did not have much flavor to me it was also not objectionable and did not turn into the sawdust I had been experiencing. Other "drier" foods were still problematic and still are to this day. But I have at least stopped the weight loss and am now returning to somewhat normal levels of energy given that I can put calories down.

I felt very strongly about sharing this info in case it is useful to anyone in the same position. Again, I can't speak highly enough about my Doctors and Nurses, but I feel this is a blind spot for them. I wish I had thought to look for this type of resource earlier, but I am glad to be helping out anyone who is needing it now.

Mifster771 said:

Loss of Taste

I literally just found and logged into this site specifically for this subject. There are 2 aspects of this I wanted to post and share about: One was, for me, the inability to eat during treatment due to loss of taste; and the other was information I have come to learn in regards to loss of taste.

Regarding the inability to eat - in my case I had the HPV related tonsil squamous cell carcinoma that had spread to the lymph node. I had the tonsil removed followed by 3 weeks (15 sessions) of the 35 rad (I believe) radiation and 2 rounds of cisplatin (one at the beginning and one at the end, each round over the course of 2 days). Somewhere around the 3rd week I could not eat solid food at all, and fluids were difficult. Anything I chewed turned into tasteless sawdust in my mouth. Anything soft such as yogurt was simply disgusting. And in all cases my body rejected it, meaning I spit it out. It did not cause nausea or vomiting, it was just physically repulsive - more on that in a moment. The best I could do was shakes made with milk, peanut butter, banana and chocolate syrup. None of those flavors were really present in the shake, but rather it was the least offensive thing with some nutrients I could get down, and even then a 16oz shake would take hours to finish. Even water was a struggle to sip. 

My health care team kept insisting that my problem was the nausea and kept prescribing me various anti-nausea meds despite me telling them that I did not have any standing nausea. It also did nothing to alleviate my inability to get food down - which I think is much different than keeping food down. It was starting to become a point of contention - especially because of the rapid and continuing weight loss -  until I learned some new information. But before I go into that, does/did anyone else experience anything similar in terms of being unable to get food down? While I understand side effects can be varied by individual I have to believe I am not alone in the difficulty I had, and I believe that while the health care teams do a great job with SO much in dealing with the cancer and many of the side effects, my experience with this specific side effect left me with the impression that it is not something they fully understand. I did not understand it either until I was given some information on the science of taste by someone who is an expert in the field. Below is text from an email she shared with me:

 

First a bit of education. There are 2 senses you use when eating: smell and taste. 

 

 

SMELL

 

Smell comes from your nostrils (orthonasal) as well as from inside your mouth (retronasal). 

 

The number of smells we can detect is endless. And most of what you think you "taste" is actually smell. The smell of lemon, chocolate, coffee, onions, etc. are what makes these foods unique. Smell is critical to the enjoyment of food. Smell is hard to do without, but it's not traumatic. And there are lots of ways you can lose your sense of smell. In fact, it's common for people who get head colds or suffer from pollen allergies to have trouble with smell. Chemo/radiation can temporarily kill smell, but it usually comes back.

 

Just to confirm, can you close your eyes and have someone put an open jar of an aromatic spice under your nostrils (like cinnamon, cumin, basil, garlic powder)? If you can detect what it is, that's good because it means your sense of smell is coming back! That's going to make you want to eat more because at least you'll get the smell sensory information from food/bev. 

 

Let me know!

 

TASTE

 

Taste comes only from the surfaces of your mouth (tongue, roof, inside cheeks, back of throat). Food has to be in contact with your mouth surfaces for you to TASTE it. You can SMELL food without putting it in your mouth.

 

There are only 5 tastes we can detect in our mouth. They are sweet, sour, bitter, salt, and umami. They are present in many foods in different combinations. Without taste, food is confusing to our brain. And it sounds like you've lost your sense of taste, and that it hasn't started to return to you yet.

 

Losing your sense of taste is VERY traumatic. It happens VERY rarely. Without taste, people literally stop eating. That's because our sense of taste is critical to our survival. Bitter tastes tell us that food may be poison. Sour tastes tell us that food may be spoiled. Without the ability to detect these things, your life is at risk (from poisoning or food poisoning). This is why you don't want to eat. It's protective. Your body is working like it's supposed to!!

 

Unfortunately, the only thing I've heard about losing your sense of taste--which almost NEVER happens except when triggered by drugs, chemo, or radiation--is that there's not much you can do except stop the treatment. And it sounds like you've done this. Thank god. 

 

Can you do me a favor? Please have someone soak a Q-tip in vinegar and touch it to places inside your mouth. Also do the same thing with some really salty water.

 

Let me know what you get!

 

 

FEEL

 

Lastly, let's check your sense of touch. Try putting cayenne pepper (best because it doesn't have tastes or smells), sriracha, tabasco, or something spicy in your mouth. Please tell me if you feel anything. That way I can tell if your trigeminal nerve is also on the fritz.

At the time I received this info I was about 4 weeks removed from treatment and my sense of smell was returning, and I did indeed start drinking lemonade. I also used this info to seek out dishes that would have some chance of going down. I ended up eating fully cooked pasta (not al dente) with a bland type of oil/butter sauce. While the dish did not have much flavor to me it was also not objectionable and did not turn into the sawdust I had been experiencing. Other "drier" foods were still problematic and still are to this day. But I have at least stopped the weight loss and am now returning to somewhat normal levels of energy given that I can put calories down.

I felt very strongly about sharing this info in case it is useful to anyone in the same position. Again, I can't speak highly enough about my Doctors and Nurses, but I feel this is a blind spot for them. I wish I had thought to look for this type of resource earlier, but I am glad to be helping out anyone who is needing it now.

2.5 yrs. Post-Radiation for tonsil cancer

The inability to eat during treatment due to loss of taste; could not stand much,everything was dry, likr sawdust and deeply unpleasant, had no nausea.

Smell of yogurt was disgusting, and mill shakes with proteins did not work either, the powder would sit on my tongue and no amount of water would clean the tongue of it.

I was losing weight and was looking at the prospect of a feeding tube. I lost saliva, taste and appetite.

A friend of mine cooked for me clear chicken broth and I would add a raw egg to it and mix it; I was doing that for 9 months 3 times a day. I could not care what I couldn’t eat, I was glad I was not losing wait and the feeding tube was out of the picture.

My saliva is still gone, my mouth is very dry!!!  Looked for different solution, but didn’t find one yet.

My saliva tests are more like a joke, as I cannot spit much to a cup.

I never heard of lemonade, but I don’t think I could drink a sweet drink, as I cannot eat anything sweet yet; every time I try I spit it out, funny even my stomach does not like anything sweet.

My taste is better now, 2.5 yrs. after the radiation treatment, but far from being what I remember.

I smell things from the past diet the same way but when it comes to consuming them that is a different story.

Now I developed osteoradionecrosis, and I tell you this is yet another monster to deal with. 

Advise you to read about it just in case.  Make sure that your dental hygiene is almost perfect, it helps. 

I always took care of my teeth, no cavities, a few of restorations, regular dental check-ups and cleaning. Never the less i got something people rarely get, and by all definitions I should not, and here I am.

So be diligent and observe, you might save yourself from a major trauma.

Good luck,

J.

...and my saliva is still about 30% of what it was.  I was fortunate to not lose much of sense of taste but I sure wish I had more saliva.  I started losing my saliva about 4 weeks in and it still hasn't returned.  But there is hope!

I can't really think of many tastes that aren't back completely.  Most are close enough that I can no longer tell that they aren't exactly as they used to be.  My problem is not trying to get sufficient calories but to limit them and only eat the right kinds of foods.  I have pretty much cut out processed sugar (with the exception of a small amount of low sugar jam a few times a week) and enriched flour from my diet, and I'm trying to limit carbs to some reasonable amount without having to keep a daily log (I feel like daily lfe is just a series of maintenance items already), but that's another topic.  Saliva isn't what it used to be, but it's not too bad.  It's usually tolerable during the day and a little worse in the evenings.  My use of Xylitol products has dropped considerably.

Coughing up blood for a week calls for seeing your nurse navigator or ENT or one of your doctors just to make sure.  Anytime you have a question this is a good place possibly someone else will answer also. I had no blood only thick Phlegm. Check with your team just to be safe-Take Care-God Bless

gparke62 said:

still waiting

I had hpv /base of tongue cancer.I am 10 months out of same treatment as you rick,still waiting for taste to come around.The taste thing doesnt bother me as much as the burning/pins and needles feeling on my tongue when i eat,did you experience that and if so has it gone away?

You and I had our cancer treatments about the same time and same location, base of tongue.  I was told I had back 1/3 of tongue removed and had a lot of numbness after the surgery before starting the radiation.  I wasn't sure if the burning sensation was me or what.  It definately got worse with and after radiation.  Salty foods burn like crazy and trying to eat a large meal makes it burn for me.  In other words the longer I eat the more it burns.  I'm about 8 months out and that doesn;t seem to be getting much better just that I seem to tolerate it better now.

4 years after neck surgery, chemo and rad and no taste or saliva. Recent dental problems. Quality of life not good. Loss of weight, energy and balance so I sleep a lot. Slowed down mentally with high anxiety. My vitals are good and leg neuropathy is aggravating, however I am still alive ,cancer free and am thankful that it wasn't worse. God bless you other cancer survivors.

and my taste is actually where I like it. I find that food still tastes "faded" to an extent. It can taste OK or good .. but it never tastes so great that I eat, after I'm not hungry.

(For examply, I used to grab that 3rd slice of pizza, just because it tastes great. Now, I grab 2 - and I don't feel like the 3rd.)

It seems weird, but this actually seems like a net positive. (Although if I had my wish - I'd ask for my old taste back - at least 1 day a week!)

For all of you struggling with this, it is tough for a few (3 months or so) out of treatment. I think most of us in the H&N Cancer department will tell you the same basic story.

But ... then it slowly starts to get better!

MG