When did your tongue stop burning?

stevenpepe

After nearly 5 months post rad, I'm still dealing with a burning tongue. Is there an end in sight and what can I do to improve it? It's really affecting my appetite. Since my last surgery October 7th, I'm down nearly 20 lbs pre cancer. I can't seem to eat enough these days.

Josephwc

I am 6 months out of surgery have a petscan coming up this week

Radical dissection on left side, 52 nodes remove with no matatasis, second surgery to remove infection, 30 rads, and one biopsy and no malignancy. My tongue still burns but not as bad. As I have said before, I'm living in India so I can't seem to hide from the spice. I can eat it now but not without pain later. I try at all cost to avoid all spices including pepper. A few months back I couldn't think of eating it. Things are changing but it is slow. just the other day I was able to enjoy buttery popcorn. A good flick, comfy VIP seating in an IMAX theatre, and a determined craving for comfort food precancer will find its way. My goal is Spicey food 2017!

 

Sandraw

Hi

Sorry you're having such a rough time. My Rad oncologist recommended Honey for me for all weird throat tongue mouth pains and of course magic mouthwash. I found out on my own that yogurt helped heal the sores quicker, maybe my imagination but it seemed that way to me. Keeping you in my thoughts and prayers.

georgiasurfer

L Glutamine

Have you tried L Glutamine powder?  It really seemed to make a difference for my husband.  He too is struggling with weight loss though. Looking back he should have gotten a feeding tube. Hang in there. Your prior posts helped us during treatment tremendously and I was so sad to hear your recent news. Sending best wishes your way. 

stevenpepe

georgiasurfer said:

L Glutamine

Have you tried L Glutamine powder?  It really seemed to make a difference for my husband.  He too is struggling with weight loss though. Looking back he should have gotten a feeding tube. Hang in there. Your prior posts helped us during treatment tremendously and I was so sad to hear your recent news. Sending best wishes your way. 

I used it in my shakes. Is

I used it in my shakes. Is there a better way to apply it? I am starting round 2 of rads today. I will post another topic for everyone's entertainment

georgiasurfer

With water

He just put a heaping teaspon in about 4

or 5 ounces of water 3 times a day. It helped keep him hydrated too.  He swished and swallowed it And sometimes Gargled It. 

Good luck.  Will be thinking of you. 

Sandraw

Hi

I also had Neurontin 300mg 3 x a day prescribed by Rad oncologist. It's usually for Diabetic nerve pain but Rad onc said they are using for Rad induced mouth, throat nerve pain.

 

cardoza33

stevenpepe said:

I used it in my shakes. Is

I used it in my shakes. Is there a better way to apply it? I am starting round 2 of rads today. I will post another topic for everyone's entertainment

What are you eating?

I was making shakes that had strawberrys and yogurt in them and talked to another throut cancer survivor who told me to quit that with all the sugar.  My mouth improved.  I was in the weight gaining mode trying to get as many calories as possible.  I now make a smoothie with coconut milk, almond butter and protien powder. My mouth improved.  My last treatment was back in Feb., its taken along time. Still can't eat things with spice, but my tongue is improving.  I barely notice it now unless I eat something that sets it off.

 

Drivingdaisy

Burning Pain

Hi Steve,  Haven't been here for a couple months.  Mother passed, another Family member diagnosised with Kidney Cancer. Been hectic.  I am doing excellent.  I found a tremendous Dentist that is knowledged in Throat Cancer & Dry Mouth, Nerve Pain.  Wish I would have found him sooner.  I am now 7 mo out of 7 Intense wks of Chemo & Rads, together weekly.  Yes, the worst pain I have ever encountered.   My mouth was so bad could not even drink water.  Feeding tube was interred @ 3  wks.  All in all 40 lbs gone...99 lbs dripping wet.  But, the Doctors have found Me to be a bit of a miracle.  This new Dentist is to thank for My much of My improvement, burning nerve pain wise.  He first prescribed taking the Gabapentin.  One wk in started having restless leg and hair falling out.  So we decided to go with tongue lazering.  Light rounds of lazer treatments on both sides & tip.  I no longer have nerve pain and can eat spicier food.  As soon as my lower Throat finishes healing inside from the Rads, the skis the limit.  Wine by New Years on the agenda.  If you read my past posts, you will see what I went thru and all the help this forum has given Me to be the best I can be.  I hope you can find relief and I am so very sorry you have to go thru treatment again.  I was surprised that they only put you thru Rads first time around.  Hope this time it stick.  Have a Good Holiday & heal quickly.    Lisa

Tonita

My tongue burns sometimes and

My tongue burns sometimes and it's reall irritated to but for different reasons.  I use a rinse of baking soda and salt which soothes my tongue.  I do hold it in my mouth for a while.  It's a temporary relief.

 

MJG1

georgiasurfer said:

L Glutamine

Have you tried L Glutamine powder?  It really seemed to make a difference for my husband.  He too is struggling with weight loss though. Looking back he should have gotten a feeding tube. Hang in there. Your prior posts helped us during treatment tremendously and I was so sad to hear your recent news. Sending best wishes your way. 

benecalorie

Hi,

Have you tried Benecalorie?  I ordered some on line.  It's 350 calories and you can add it to shakes to help with weight gain.  It looks nasty and separates in the container, but if you put it in a blender it adds no taste, but adds some protein and much needed calories.

Good luck

Margi Greene

St. Charles, MO

Raddude

L Glutamine in water with

L Glutamine in water with swish and swallow worked for me.

 

RottiesMom

Sandraw said:

Hi

I also had Neurontin 300mg 3 x a day prescribed by Rad oncologist. It's usually for Diabetic nerve pain but Rad onc said they are using for Rad induced mouth, throat nerve pain.

 

Me too!

I was also on the Neurontin, same dosage.  I really think it helped with the burning pain!

Joanne