Taste and Saliva

jtl
jtl Member Posts: 456
I am a little over 2 weeks post rad and have a little saliva but very minimal and not enough to swallow food without washing it down with liquids. I have a sensation of taste but in most cases it is not what the food should taste like. For example I just had a powder sugar donut with my coffee and it tasted like cardboard. I am curious about what others have experienced with respect to regaining these functions.
Regards,
John

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Hey John
    It's like my taste buds woke up one at a time, and the result was not always immediately pleasant. I could taste sweeet a little bit right away, but the sweet taste of foods faded after just a few bites. Sour overwhelmed me. Lots of foods tasted terrible when I finally could taste them at all. Even meat--- I couldn't eat chicken, especially dark meat, double especially liver for a long long time.

    Some tastes never quite made it back for me. Chocolate. I guess I continued to notice change, and improvement, for a number of years post radiation. Maybe 4 years or so.

    Adding water to help wash down food even changes the taste. It is not the same as saliva. So some of your improvement will have to await return of salivary function.

    Hang in there.

    Pat
  • DrMary
    DrMary Member Posts: 531 Member

    Hey John
    It's like my taste buds woke up one at a time, and the result was not always immediately pleasant. I could taste sweeet a little bit right away, but the sweet taste of foods faded after just a few bites. Sour overwhelmed me. Lots of foods tasted terrible when I finally could taste them at all. Even meat--- I couldn't eat chicken, especially dark meat, double especially liver for a long long time.

    Some tastes never quite made it back for me. Chocolate. I guess I continued to notice change, and improvement, for a number of years post radiation. Maybe 4 years or so.

    Adding water to help wash down food even changes the taste. It is not the same as saliva. So some of your improvement will have to await return of salivary function.

    Hang in there.

    Pat

    Enzymes and slime
    The lack of saliva also means you don't have the same amount of enzymes in your mouth that you used to have. I tried making up some "artificial spit" for Doug to use when eating starchy things - it was basically amylase in warm water. I could taste it doing its thing (converting starch to sugar) and he said it did make food less gummy, but not so much that it was worth the trouble.

    Also, your tongue lacks the "slime" component - you know how (back in saliva days) if you drank orange juice right after brushing your teeth, it tasted awful? That was because the surfactant in the toothpaste stripped off the tongue slime (not sure what it is - that's my next project) and exposed your taste buds more. The bitter/sour taste overwhelms the sweet taste in this case, and so the OJ is UGG.

    I'm thinking that foods like chocolate and coffee taste bad/off because you are getting too much bitter and not enough sweet.

    I'm sure it's more complicated that just replacing that slime, but it does explain why, even when your taste buds recover, things don't taste right.
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Surprised
    John,

    I for one am actually surprised that you have any saliva and a bit of taste just 2 weeks out of treatments. I didn't get any sensation of taste until about week 4 or 5 and I still have no saliva. I hope you get total recall in both departments.

    My Best to You and Everyone Here
  • ratface
    ratface Member Posts: 1,337 Member
    MarineE5 said:

    Surprised
    John,

    I for one am actually surprised that you have any saliva and a bit of taste just 2 weeks out of treatments. I didn't get any sensation of taste until about week 4 or 5 and I still have no saliva. I hope you get total recall in both departments.

    My Best to You and Everyone Here

    It bodes well for you
    As John said, if it's beginning already you are ahead of the curve. I'm pedicting good recovery for you at six months?????
  • Hondo
    Hondo Member Posts: 6,636 Member
    jti
    Amazing that you finished treatment and still have some saliva, Like Marine and ratface just said looks like you might be on a fast road to recovery.

    Very happy for you
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Long and Winding Road...
    It's a long and winding road....two stps forward, one day back.

    It's a very long and slow process.

    Water with each bit of food and every other sentence of speech is not uncommon. The bottle of water will be in your hand most of the time for awhile yet.

    I lost all taste and saliva as well, but it's pretty much 95% back, both of them.

    It's been over 2 1/2 years, and I still have some improvement at times.

    Best,
    John
  • jtl
    jtl Member Posts: 456
    Skiffin16 said:

    Long and Winding Road...
    It's a long and winding road....two stps forward, one day back.

    It's a very long and slow process.

    Water with each bit of food and every other sentence of speech is not uncommon. The bottle of water will be in your hand most of the time for awhile yet.

    I lost all taste and saliva as well, but it's pretty much 95% back, both of them.

    It's been over 2 1/2 years, and I still have some improvement at times.

    Best,
    John

    Talking
    I did find out that talking really drys out my throat. For whatever reason yesterday was a bad dry mouth day, I woke up coughing several times last night which was a first. At least I can still enjoy an occasional brew, may as well drink the cheap stuff now since it probably all tastes the same.
    Regards,
    another John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    DrMary said:

    Enzymes and slime
    The lack of saliva also means you don't have the same amount of enzymes in your mouth that you used to have. I tried making up some "artificial spit" for Doug to use when eating starchy things - it was basically amylase in warm water. I could taste it doing its thing (converting starch to sugar) and he said it did make food less gummy, but not so much that it was worth the trouble.

    Also, your tongue lacks the "slime" component - you know how (back in saliva days) if you drank orange juice right after brushing your teeth, it tasted awful? That was because the surfactant in the toothpaste stripped off the tongue slime (not sure what it is - that's my next project) and exposed your taste buds more. The bitter/sour taste overwhelms the sweet taste in this case, and so the OJ is UGG.

    I'm thinking that foods like chocolate and coffee taste bad/off because you are getting too much bitter and not enough sweet.

    I'm sure it's more complicated that just replacing that slime, but it does explain why, even when your taste buds recover, things don't taste right.

    Enzymes and slime
    Yes, yes, yes! I still feel like this all the time. My tongue feels stripped of it's protective slime all the time. I think that is why I like milk so much, it feels better, while water feels like it strips it more.

    My taste is not what it was, even 2.5 years later, but I'm just happy it doesn't taste like pure salt, metal and cardboard dipped in wall paper paste anymore. Chocolate is finally pretty tolerable to me now, which is awesome. I've always loved chocolate. I have a chocolate orange cookie I want to try and bake. Should be interesting.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    jtl said:

    Talking
    I did find out that talking really drys out my throat. For whatever reason yesterday was a bad dry mouth day, I woke up coughing several times last night which was a first. At least I can still enjoy an occasional brew, may as well drink the cheap stuff now since it probably all tastes the same.
    Regards,
    another John

    Talking
    My mouth is so dry that it makes talking very difficult. I hate talking on the phone all the time. I don't talk a lot any more and I used to be a chatter box. I have a constant dry tickle in my throat that drives me mad. I cough and hack and gag a lot. Especially at night. This dry mouth thing is killer. :(
  • DrMary
    DrMary Member Posts: 531 Member

    Enzymes and slime
    Yes, yes, yes! I still feel like this all the time. My tongue feels stripped of it's protective slime all the time. I think that is why I like milk so much, it feels better, while water feels like it strips it more.

    My taste is not what it was, even 2.5 years later, but I'm just happy it doesn't taste like pure salt, metal and cardboard dipped in wall paper paste anymore. Chocolate is finally pretty tolerable to me now, which is awesome. I've always loved chocolate. I have a chocolate orange cookie I want to try and bake. Should be interesting.

    lecithin
    I just read a paper in which the researchers were measuring the viscosity of 3 artificial salivas. They concluded that the mixtures did not spread on the tongue as well as real saliva and so were not really effective. They tried adding some phospholipids (our spit has several different kinds) and got closer to the real thing. Soy lecithin contains one of the phospholipids found in spit - I tried mixing some with water and trying the "drinking OJ after brushing" experiment with and without swishing with the lecithin before the OJ. The OJ was much sweeter and less bitter with the swish, but that was only one test and not blind at all. I don't have time to pursue this now, but would be interested in the experience of others.

    Lecithin is a common additive to chocolate chips - some of that is to impart "mouth feel" but it also might help with taste.

    Oh, and the researchers used various rheometers to test the spreading viscosity of spit and artificial spit - no tongues were harmed in this experiment.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    DrMary said:

    lecithin
    I just read a paper in which the researchers were measuring the viscosity of 3 artificial salivas. They concluded that the mixtures did not spread on the tongue as well as real saliva and so were not really effective. They tried adding some phospholipids (our spit has several different kinds) and got closer to the real thing. Soy lecithin contains one of the phospholipids found in spit - I tried mixing some with water and trying the "drinking OJ after brushing" experiment with and without swishing with the lecithin before the OJ. The OJ was much sweeter and less bitter with the swish, but that was only one test and not blind at all. I don't have time to pursue this now, but would be interested in the experience of others.

    Lecithin is a common additive to chocolate chips - some of that is to impart "mouth feel" but it also might help with taste.

    Oh, and the researchers used various rheometers to test the spreading viscosity of spit and artificial spit - no tongues were harmed in this experiment.

    Artificial Saliva
    Where do you even get artificial saliva? Is it something that drs prescribe? Or is something like the biotène oral balance dry mouth moisturizing liquid considered artifical saliva?
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    Taste / Saliva
    Hi John

    2 weeks out with a little saliva and a little bit of taste (no matter how off it may be) is better than most. I know that stale cardboard taste well. Fresh veggies were the first thing that began to taste 'right' to me. About 4-6 weeks post treatment is when selected foods began regaining their taste. It was a slow progression from there. Same with the saliva for me, gradual improvement. I am now over 1 year out and taste is pretty much back to normal and the saliva is probably about 90% or so.

    One thing I noticed was that fresh foods tasted much better than canned/processed foods. For example, fresh baked cookies tasted excellent while Chips Ahoy or something similar didn't taste good at all. Cheers.

    Jimbo
  • Hondo
    Hondo Member Posts: 6,636 Member

    Talking
    My mouth is so dry that it makes talking very difficult. I hate talking on the phone all the time. I don't talk a lot any more and I used to be a chatter box. I have a constant dry tickle in my throat that drives me mad. I cough and hack and gag a lot. Especially at night. This dry mouth thing is killer. :(

    Dry-mouth

    Sometime my mouth gets so dry it is like someone through sand in it. The bad part is can be like that for days but I find it is mostly caused by medication or hot weather.

    I would die with out my Stoppers 4
    Hondo
  • Marty36
    Marty36 Member Posts: 84
    Jimbo55 said:

    Taste / Saliva
    Hi John

    2 weeks out with a little saliva and a little bit of taste (no matter how off it may be) is better than most. I know that stale cardboard taste well. Fresh veggies were the first thing that began to taste 'right' to me. About 4-6 weeks post treatment is when selected foods began regaining their taste. It was a slow progression from there. Same with the saliva for me, gradual improvement. I am now over 1 year out and taste is pretty much back to normal and the saliva is probably about 90% or so.

    One thing I noticed was that fresh foods tasted much better than canned/processed foods. For example, fresh baked cookies tasted excellent while Chips Ahoy or something similar didn't taste good at all. Cheers.

    Jimbo

    Dry foods, like donuts, are
    Dry foods, like donuts, are always tough. Even with increased salva, dry foods like donuts and bread are tough to eat because I find they are so flavorless and just take a lot of work to eat without lmoisture in your mouth.. I don't really eat sandwiches any more because of this. Saliva will increase-- it's early-- but probably like before. I still use Pilocarpine two months out and chew gum, eat spicy food to spur on saliva.
  • jim and i
    jim and i Member Posts: 1,788 Member
    saliva?
    Jim is 3 months out from treatment and still has not a drop of saliva and everything taste really bad. I think, as others have stated, that you are going to move along quickly. But, don't get discouraged if you go backwards. Jim started to get some taste back then completely reversed to bad taste again. I hope you continue forwrd.

    Debbie