Taste & Saliva

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.

Hello M 771,

In your paragraph about how Rare it is to lose one's sense of Taste, you left out the word Surgery. In this group, I doubt I'm the only person here who has had Glossectomy .  Mine was initially Subtotal glossectomy , however now ..the reconstructed flap ( from large piece from my scapula) was invaded by new tumors. And the tiny sliver left of my original tongue also sustained repeated surgeries ( plural) to cut out new recurrent tumors.  

There's nothing left of my tongue, nor of my front floor of mouth ( all exciised ) tonsils out, submandibular salivary glands out, part of mandible sawed away...etc.  I Cannot taste.  ( bilateral neck dissection..)

Yet I do enjoy cooking and baking For Others. It's an old hobby.  I love recipes, and cooking shows.  It's sad but how I now experience Food is through others experience of eating what I make for them.

My Radiation Oncologist writes in his Notes about me  Taste ---- 0% out of 100%.  No tsste.

So, you did leave out those of us affected by Glossectomy. Mine was a 7+ Hour surgery initially, then many more since.   I was 64 pounds then. Today I weigh a whopping 71.6 pounds.. 

LitlCJdoll

I am about 2 1/2 years post treatment and I am starting to accept that my taste and saliva is the new normal for me.   Food is just not a tasty as it was and eating is more of a necessary event than a treat.  Don't get me wrong, I can taste food but not like I did before all of this radiation.  I would guess that I have 70% of my taste back.  There are always some peculiarities when you don't get the full flavor.  I had a sweet-tooth, but that is really gone.  Still, I persevere for the calories and something eat with my coffee.  It turns out old habits are hard to break.  Not enough saliva for chocolate so that is out.  I still have a burning aversion to spices, so that eliminated a lot of what I liked to eat.  I  can always find something to cook or on the menu that is mild and not too difficult to chew.  It does take me a longer to eat, but I can swallow and eat so I'm not complaining (too much).    Eventually I will take stock of this and figure out a new healthier diet.