Taste and saliva

fishmanpa said:

The Food Bucket List

It was nice to read the encouraging responses to the OP. You're a young guy to be going through this b....

 

Having yet to begin treatments, I can't really imagine what this is going to be like until it actually happens. I've had bad colds where my tase was surpressed but I've not had my taste buds and salivary glands nuked before either.

It's encouraging to know that it will eventually come back even if it's not 100%, and knowing that spicy foods still will be eatable makes my obsession with Thai food a future goal!

I have the feeling I'll be living off smoothies for a while though ;(

 

 

I'm telling you that more than likely it'll be back...

I just had Hot & Sour Soup tonight with House Special LoMein....

I eat Jalapenos on my cheese burgers, red pepper flakes on my pasta and pizza... wasabi and kikoman soy on my sushi, habenaro sauce and blue cheese on my blackened chicken wings from Harry's Cajun Seafood and Grill... In other words, I'm not limited by taste any longer,,, I beleive that eventually most if not all of you will get your taste back as well.

JG

donfoo said:

Thanks for the regular updates.

Joe,

So this magic "week three" is becoming reality for you, almost as clockwork. Do you suspect the rads are beating up your tongue now and could hang with you until through complete TX?

 

Hang in there!

Don

 

And yes, I think the burning and throat sores are here to stay and will probably get worse. The only good news is there are only 10 RADS left.  It'll be a struggle, but its almost done. 

The doc gave me my first fentanyl prescription today but I'm not quite ready to go there yet. I'm still getting along with the hydrocodin but I can see a time where I'll need 24 hour relief. 

 Wouldn't be so bad if there weren't so many great restaurant commercials.   <sigh>

Joe Cortney

Dallas, TX

Experimentation seemed to get me through some of it. I would try different soups. Sure it's discouraging and frustrating but i kept going. I found that chicken broth with noodles works, tomato soup, water with flavored protein packets added(lemonade flavor worked best for me) and so forth.

Drink water.....drink lots of water! You need the hydration. Add flavor packs to it if it tastes like it's coming from a steel pail through a garden hose.

Fear not....it is temporary. I'm day 47 post treatment and getting slowly better. Energy returning, tastes have some improvement, saliva? well that's going to take longer.

It's all subjective, no one can tell you "one month from now all your taste and saliva will come back!" Sorry, it just doesn't work that way.

So...keep your head up...try hard to not be discouraged and keep those swallow muscles going!

All the best and God Bless,

Alan

catluver96 said:

Hi,
 I am new to this site

Hi,

 I am new to this site and have "met" some of you through my first post a couple of weeks ago....about mouth pain and taste. Lots of great feed back and support.

 I'm at week 9 today, post radiation and chemo. I just started eating some soft solid foods almost 2 weeks ago. I lost 1/3 of my tongue and am learning how to eat with it. In addition I still have some mouth pain. Ulcers and some healing from surgery last August.

 One of my favorite foods right now is scrambled eggs with cheese. I've even added some thin sliced lunch meat ham. Milk tastes good now. I've eaten lunch meat slices rolled up. Avocados with olive oil, garlic powder and salt (don't seem to have trouble with a little salt now). Tried some take out beans and rice my hubby brought home. It was OK. I tried some canned refried beans - way too sticky.

 These foods that have some taste do fade after the first couple of bites. I think the smell and my imagination help. I've found that foods like yogurt and pudding are hard for me to eat, flavor wise. Just yuck. But I will try again at some point. 

 Another idea I want to go back to trying again is combining chicken noodle soup with garbonza beas in the blender. Added protein in the beans.

 Found spaghetti or ravioli to taste like pepper. Don't like hot peppery foods, so I won't be trying that again for a while.

 I've gotten so much good information and support from all the kind people here. Thank you for sharing. I do need the encouragement. Sometimes eating and food seem like such a chore. Thankfully we have products like Ensure Plus. That keeps me going.

~Vicki

Hi Vicki

Welcome .....and sorry you have to be part of this group at all.  If you haven't already checked it out,  take a look at the SUPERTHREAD.  It is the first entry on page 1 of this discussion board.  It is loaded with years of good information and tips from other survivors that will help with just about anything you can think of.  There are lists in there of good soft foods to try at this stage in your recovery as well as recipes for various soups and broths. 

I lost 75% of my tongue, and for me pancakes with lots of syrup was one of the first real foods I was able to eat.  Scrambled eggs worked well as you mentioned, plus pudding (chocolate only), and smoothies.  Experiment a bit until you find a "go to" food to get thru the next few weeks.  Anything acidic like tomatoes, tomato sauce, ketchup was a big NO NO and I still can't eat it 2 years after surgery.  Alfredo sauce makes everything slide down pretty well now.

I also used a protein powder mixed in with just about anything....pudding, ice cream, smoothies.  It helps with the healing process, so if you can' eat enough with beans and such, try the powder.

any other questions, just ask.  Everyone here is more than happy to help.

Best of Luck in your recovery.

Ingrid

btinsman said:

Thanks for the comments so

Thanks for the comments so far, it's encouraging to know that I most likely won't lose my taste forever, I can deal with the recovery period as long as it comes back eventually ha. And also I never knew nor thought about my throat muscles getting weak and being unable to swallow I will have to make sure to get something down everyday from here on out I have noticed a slight difficultly in swallowing even water so thanks alot for that insight possibly saved me from even more torture ha. What kind of foods do you guys eat, the lack of saliva makes it difficult to eat solid foods which I'm sure you are all aware of. Thanks again in advanace you have been really helpful.

Stick at it as best you can. I found spaghetti such as Cabenarah  with lots of sauce is ok or try soups such as minestrone with lots of vegs.Chinese take away noodles with a sauce may work.You may not want a big dish as sometimes it can be laborious to eat a big meal. Meat (any kind) will be bland for a while (like cardboard) and milk will help.Better than water. As a moistener when walking I buy a drink we have here called 'Breaker', coffee flavored milk etc with high sugar content and full cream milk.If some saliva comes back(and it will) I moved to 'cup o soups' such as chicken or beef .The warm water helps move the sticky flem that starts to sit on your larynx/gullet.I am now starting third month since last Rad/Chemo and each week has been a different challenge.One step at a time and it will get better.Good luck.

My taste started to come back a very little about 3 weeks ago. I don't taste things as they were, but some foods give me a vague sense of their "real" taste. I have to experiment with different foods to see what tastes OK. The taste is not good, but much better than a few weeks ago when everything tasted bad and eating was just hard work.

Like you food is very important to me, I am the family cook and eating out was very important to us. Seems selfish to worry so much about taste when life is on the line and the main thing is to beat the beast. Still it is important and part of human existence, a major part. I do have some real hope now that my ability to taste will come back even if it is so much slower than I hope.

Jama said:

Hey Matt,
I was thinking a

Hey Matt,

I was thinking a lot about making some smoothies for my husband who is just starting to feel some more pain in his throat.  Reading this post I am wondering can you or anyone tell me what kind of smoothies do you drink?  It would be much appreciated.  I have been making Russ a shake every night and he seems to like it.  The food is also tasting very bland to him too.  Sounds like par for the course.  I lost my dad to brain ca this last November.  I had the privelege of sharing in the care of him his last three months on this earth.  He kept on telling me, "You're drown'n me".  Then he would smile.  I think Russ thinks that now too.  Russ is doing quite well on trying to eat even though he can't taste anything and the taste he is expecting isn't there.  I am sorry for all of you that you are let down like that.  You are all in my prayers and keep coming back.

JT

Hi ya JT, just as a reminder, there is a lot of info and links on the ST concerning smoothies, and associated...

Best,

John

Jama said:

Hey Matt,
I was thinking a

Hey Matt,

I was thinking a lot about making some smoothies for my husband who is just starting to feel some more pain in his throat.  Reading this post I am wondering can you or anyone tell me what kind of smoothies do you drink?  It would be much appreciated.  I have been making Russ a shake every night and he seems to like it.  The food is also tasting very bland to him too.  Sounds like par for the course.  I lost my dad to brain ca this last November.  I had the privelege of sharing in the care of him his last three months on this earth.  He kept on telling me, "You're drown'n me".  Then he would smile.  I think Russ thinks that now too.  Russ is doing quite well on trying to eat even though he can't taste anything and the taste he is expecting isn't there.  I am sorry for all of you that you are let down like that.  You are all in my prayers and keep coming back.

JT

Hi Matt, I had head and neck cancer in 2000 and required 32 treatments of radiation which left my throat raw and very sore. (there is a silver lining, I lost 38 kilo and got down to my ideal weight). I haven't told many people this as it sounds so bazaar, but the only drink I could tolerate at the time was, dare I say it, Coca Cola. I would have thought it was the one drink to avoid but it worked for me. I gave it up when my throat healed.

It's hard for me to believe but, I'ts been about 27 months since my last treatment. I did 35 radiation sessions with 3 high dosage Cisplatin chemo treatments. Had a PEG. That saved me. I lost 50 lbs over the course of the 35 weeks of treatment and then the subsequent 7 weeks of trying to recover. My taste buds came back, albeit very slowly. A few months after I completed treatments the layer of "film" on my tongue started to slowly disappear. After that, things started to start to taste better. I used to love spicey foods. Obviously I couldn't do that for quite a while. I've noticed that I can tolerate spicier things now. I still take a Prilosec OTC every day because I'm prone to indigestion. However, most things taste normal. I will say that most sweets lack some intensity as opposed to before treatment. I'm a salty "potato chip" kinda guy anyway, so it doesn't bother me. My saliva is still an issue. It very, very gradually improved. I figure that I'm probably at about 90% of where I was pre-treatment. However, it doesn't function as quickly as it used to. My first bite of food is good but after that I have to constantly chase everything with liquid. The saliva just doesn't come back quick enough. All-in-all, life has returned to some semblance of normalcy. Having said that, I don't have the appeitite I had pre-cancer. I know that every day of my life, until I die, will be different than it would have been, had I not had cancer. I choose to look at those differences as subtle reminders of what my past life was. Not as casualties of my cancer. It was a part of my life but, I will not let it define me. I wish you all the best of luck. This is a very difficult road to travel but, it can be navigated successfully! Still amazes me to realize that I've been NED for 2 years...Surreal! God Bless Us All!