Bitter taste returned

wytrbt

Zinc Sulfate was recommended for the bitter/metallic taste and worked well for 2.5 months  until a few days ago. Its driving me crazy! Any

tricks that any of you have tried that workedfor you?

AnotherSurvivor

The only thing that I found

The only thing that I found that works is Patience.  At one year since start of treatment my taste changes at least weekly, sometimes day to day.  There have been temporary periods when things were 'stable'.  I have found that even 11 months since end-of-treatment the old generic salt and soda gargle still helps.  Also, tastes alter taste.  If I go on an extended expresso binge saliva volume and density changes, and the entire range of tastes with it.  I also suspect that  lymphedema factors in somehow.  Mine subsides to almost gone, flares back up, and then I seem to experience a change in taste.  Can't say if it's casual or causal, but they seem to correlate.

wytrbt

Thank you for your reply. I

Thank you for your reply. I can't help but feel the lymphedema may be one of the triggers. I do gargle with the soda/ salt solution and I will get a foamy

reaction during the taste alterations. I belong to another network who suggested Miracle berry. And believe me, I will try anything at this point. The

bitterness causes nausea on bad days. How long have you been in remission?

AnotherSurvivor

Today is the anniversary of

Today is the anniversary of the start of treatment.  I'm NED and the only sign of the tumor is the fibrosis in the target area. My lead oncol says he will be very surprised if there is a relapse, but I'm years away from the word 'cured'.  The new normal is weird mouth.  I have enough saliva that I don't need the dry mouth products, but the saliva changes.  Taste is mixed.  I pretty much got the full range back, but different.  Sweet is very hard to tolerate, and I can pretty much pick up the various corn syrup forms just by smelling the bottle, so a lot of packaged products like salad dressings are out. 

Salad itself is a biggy, thru the next month I'm still on blood thinners and have to maintain the same level of vitamin K.  I was eating salads when I started on the meds, so I have had 8 months of mandatory salads every day.  They have gotten progressively more sophisticated, and I now have supplies of different olives from most of the world (Amazon Prime!).  The tastes from the salads are 'true', no loss or change from before, so I eat lots of unprocessed foods. 

I came to the conclusion that a lot of my old taste was 'acquired', a long time ago in some cases.  Coffee was foul two months ago, but that addiction was reacquired with no problem.  Alcohol is out right now, not a good mixer with Warfarin, but trial sips of beer have been pretty bad.  Milk Stout tastes like root beer.  Come January I will be reacquiring a taste for rich peaty single malts. My people are seafaring Scots, my first serious outdoor activity post-treatment was in September,  easily beating the pathetic Anglo-Saxons in sailboat races. 

My lymphedema is frustrating.  I have the head support thingy for sleeping, do the exercises and massage, and it'll be gone.  Even if I keep doing that, two days later it will be back.  Any exposure to cold on my neck is like a bolt tightening on one set of muscles, so I have to wear scarfs.  Fortunately, there are a great many fine woolen plaids to choose from.

wytrbt

Is Ned your name or an

Is Ned your name or an abbreviation that I obviously don't understand. Lol. You won't believe this, but mu husband and I are members of the Black HIlls Celtic Society. We both have a long history of Scots, Irish, heritage. I recently found out I have Norse dna. He has 3 kilts and our daughter lives in england.Because of this we got to see Scotland, Ireland and Wales. I bet you and I will have fun conversing. 

  Back to our problems....I am tryiing different things recommended by others in different support groups. If I find relief, I will let you know as well. I recieved Metaquil today from Amazon and it is awful tasting, but might be helping some. My cancer is supraglottis and caused by silent reflux so I am worried the taste changes might be reflux even though I had a fundoplication last year. Congratulations on your one year recovery!

CivilMatt

Bitter taste, sweet life

Wytrbt,

NED is No Evidence of Disease and is generally celebrated at all clean doctor appointments.

I did try miracle fruit and it was fun and interesting.  I did it with Oranges and found some satisfaction.

Matt

Sprint Car Dude

Miracle berry

I have tried the miracle fruit berry products. They definately make anything sour taste sweet and delicious. I still can not eat fruit since fnishing treatments. The miracle fruit make fruits taste great, but I did not have enough saliva to desolve the tablets. It was amazing the few times I tried them. I could actually bite a lemon and it tasted like the best lemonade I ever drank. The downside was that the Pectin in the fruit caused sores in my mouth. So I just have gotten used to the new normal of no fruit. Good Luck.

wytrbt

My miracle berry package

My miracle berry package arrived yesterday and I didn't have luck with it. I found an article in a medical journal about the drug Neurontin and zinc gluconate and am having some luck with that. It is so weird....if my tongue is sore ,then the horrid taste subsides .If not, then it is there. My daughter sent me a test from England that you can purchase. It measures the pepsin in your saliva which proves reflux is occuring. When I eat my saliva becomes foamy so its good idea. I had the reflux surgery and  want to make sure it is working. Are my symptoms unusual or do others go through this too?  Thanks for the help. It is very appreciated.

 

 

wytrbt

CivilMatt said:

Bitter taste, sweet life

Wytrbt,

NED is No Evidence of Disease and is generally celebrated at all clean doctor appointments.

I did try miracle fruit and it was fun and interesting.  I did it with Oranges and found some satisfaction.

Matt

Hi Matt....thanks for

Hi Matt....thanks for clarifying.....mine is coming up end of November. Fingers crossed! Thanks, Sally.

AnotherSurvivor

My impression is that while

My impression is that while there are general tendencies, nothing is a hard and fast rule in recovery.  A salty taste seems to come back first, followed by a bit of dry mouth.  As the abused tissue recovers that all changes in individually different directions and degrees.  At one year, changes keep coming for me.  Since I don't seem to have much choice, I just follow along.  There seems to be a lot of chemistry at work in taste, and as I've said taste alters taste.

  If I go a day or two without coffee, rare but still possible, the thickness and quantity of my saliva changes considerably.  If I don't drink a good amount of water in a day, the enzymes in my saliva seem to concentrate.  My mouth is still moist, but the concentration can decompose a piece of gum in under ten minutes.  The first time that happened I though, well, bad batch of gum.  But steady experimentation demonstrated it was the saliva.  Impressive, hopefully it kills off things like viruses while it's at it.

I'm not sure what is what on some taste changes, adults tend to lose their sweet taste as they age, so maybe treatment just amplified mine.  My wife has never been able to tolerate different whiskey tastes, still likes sweet.   That's weird.

wytrbt

AnotherSurvivor said:

My impression is that while

My impression is that while there are general tendencies, nothing is a hard and fast rule in recovery.  A salty taste seems to come back first, followed by a bit of dry mouth.  As the abused tissue recovers that all changes in individually different directions and degrees.  At one year, changes keep coming for me.  Since I don't seem to have much choice, I just follow along.  There seems to be a lot of chemistry at work in taste, and as I've said taste alters taste.

  If I go a day or two without coffee, rare but still possible, the thickness and quantity of my saliva changes considerably.  If I don't drink a good amount of water in a day, the enzymes in my saliva seem to concentrate.  My mouth is still moist, but the concentration can decompose a piece of gum in under ten minutes.  The first time that happened I though, well, bad batch of gum.  But steady experimentation demonstrated it was the saliva.  Impressive, hopefully it kills off things like viruses while it's at it.

I'm not sure what is what on some taste changes, adults tend to lose their sweet taste as they age, so maybe treatment just amplified mine.  My wife has never been able to tolerate different whiskey tastes, still likes sweet.   That's weird.

You have been a huge help.

You have been a huge help. Salty taste and dryness is where I am at. I had two weeks of bliss over Halloween and I thought my suffering was over. So it was hard to face this again. But from what I understand, the alterations are more normal. If I find a miracle, I promise I will let you know! Have you tried the zinc at all? Many swear it has helped. I"m waiting for a test kit by mail first. Food tastes good though. Have a nice Thanksgiving! You have much to be grateful for.

 

wytrbt

My bitter taste "cure" is....

My bitter taste "cure" is.....and I can't believe it.......juicy fruit gum. Takes the horrible taste completely out of my mouth. I tried several expensive products recommended by others. Not one worked. I better by stock in the company now. When were you able to tolerate garlic or spices?