very slow taste bud returns

If your lack of taste/ good taste is due to a buildup of plaque on your tongue caused by lack of saliva, here are a few things that were recommended to me and each helped a little..

Using sprays like Biotene, to keep my mouth moist

Limiting my dairy based smoothies, cut back on yogurt and milk

Pineapple will cut through the mucus and thickness of the build up, but is very acidic and can quickly cause mouth sores so use it cautiously.

Using a tongue scrapper

Having a thorough dental cleaning once a month

My taste didn’t come back until my saliva came back and  the buildup was gone. Now everything has a new intense taste.

Also, I am sure you have heard it before, but 10 weeks and eating is a HUGE accomplishment to some of us that had a hard time. Give yourself time, and don't be too hard on yourself. As difficult as it is somedays, try to celebrate all of the small steps forward. It does get better!

I hope you are having a good day!

Dean54 said:

Not for everybody it doesn't

I'm 10 months from my treatments and still have pratically no taste and what I do have is distorted and very little saliva. If I eat anything that isn't soup or super saucy I have to just chew it up and swallow it with water and yes, every meal is a chore. I'm a weight lifter and it isn't easy getting enough calories and hate to always sound like a downer, but don't believe it will get any better at this point.

I ran into a former work buddy from years ago and he had the exact same cancer as I did and he said he's two years out and still no taste.

Sorry, I should have said "may" get better. At 11 months out, I also still struggle with eating. At 10 weeks out, I was still on a nothing by mouth order, PEG tube only and in hospital for malnutrition and dehydration..  10 months out I still had my feeding tube but was able to get minimal soft runny foods down. So I get it. Just looking back, I am in a  much better place now.  I am trying new foods and combinations that were never on my menu b4. I guess I was trying to express hope mixed with some luck and old fashion stubbornness to find something that works! was hoping to give a small ray of hope, however misguided. 

Sorry if I offended you Dean54, and truly hope you find something that works for you.I know its hard. I struggle too. 

There is no better way to find out what kind of food might go down without a fight. Head to the nearby buffet and try a spoonful of everything. You'll at least find some solid food that you can start with.

While my taste remained pretty much intact my entire treatment - I do recall some advice I was given early on..... "Don't eat your favorite foods while going through treatment or while your taste buds are wonky." The idea was that if you do, you'll never like those foods the same way again.

Boy, I can say that's true with just a couple of foods I really liked prior to treatment. We used to drink "green shakes" all the time as a healthy meal replacement. Now, just the smell of them takes me back to treatment and I get ill. Same goes for soft eggs.

whoisjohngalt said:

debbie

So what does your food taste like? Are some foods still awful or close to normal? I understand it is a slow process but based on your experience asre you confident it will return to normal? Is your salive getting better at the same rate as your taste buds? Do you still get any nutrition from shakes are is it all from solid food?

Thank you

Most foods are very intense in flavour. I have to be really careful with any sort of spice or 'heat'. Food is not so much awful tasting, just maybe a bit boring/bland now so not so appealing.

My dentist explained it is like having a new tongue. Starting all over, like a child. Experimenting with different flavours to see which ones you like. Or remember.

Foods that are aromatic, eg: fresh green peppers and cucumber are very much as I remember them tasting.

My saliva is getting better. I still carry a water bottle around with me all day, but don't have to fill it as often as I did earlier on. 

I still need at least two glasses of water with each meal. That is habit now, so not so annoying. I expect this to be a way of life now, so if it does get better, it will be a bonus.

I still use shakes for some nutrition. Not everyday now, but I like them, and they are easy for a quick meal or snack on the run or if I have had a low calorie day.

Meat is still a challenge, but I do get down one or two bites. Shell fish go down real easy ( of course nothing but the expensive stuff for me!)  Fish, salmon, halibut, not so easy.  Lightly stir fried veg is my main meal, which is a healthy side effect. Would love to be eating peanuts!

The way I can describe what  I have success with is  food that 'clumps' when you chew it. . eg: dense bread ( like bagels) or moist food (like tomatoes)  things that shred when you chew them eg: meat, nuts,  are more difficult. If that makes any sense to you.

A bit of background: I had a feeding tube for 10 months. The first two+ months I was not allowed anything by mouth. My dentist and speach therapist attribute that to the cause of the build up of plaque on my tongue that inhibited any taste for a long time.   I also have a lot of food allergies, so it made introducing soft foods with enough calories a challenge. I lost close to 70 lbs, of which I have regained 2.  I will be one year post treatment next week.

Keep trying new things. I take a small portion of the 'family meal' every day. I am noticing an improvement, not weekly, but at least monthly.

Hope you are seeing some improvement too.

Deb

My very experienced oncs and ENT told me it would take about a year to fully recover.  I was impatient with that and expected things to move quicker the whole year.  At 20 months post things are still improving, but at a much slower rate, and day-to-day can be variable.  Probably that was true prior to treatment, but I just didn't notice.  There were times, especially in the first few months when I was afraid that nothing would come back.

Today my saliva is very close to normal.  Yesterday I was so dry that xylimelts didn't melt.  I was working outside and it was hot, so probably wasn't drinking enough water until evening.  Evening was spent watching sunset over a couple of cocktails based on some potion that I had never heard of, seems they can distill poblano pepper juice.  It tasted pretty good with ice and soda water.  It's easy to prescribe patience now, but mostly I would say be patient, and don't give up hope.  Time and extra protein in your diet are going to do more for recovery than anything else.  I still do protein shakes by the way.  I use them as creme for my coffee, and as before treatment drink far too much coffee, but with the shake it is now a healthfood drink.

.. whats a tastebud?

I take it yours are far from back also? I seem to take a step foward then 2 back in this regard. And, whats up with the fact that on occasion if I can taste something, it's only for a bite or 2, like you used up the couple of taste buds you had?