Still losing Weight, "Burning Mouth" Pain Hampering Eating...Frustrated !!

Drivingdaisy

I am sorry for not checking in sooner to support and congratulate everyone fighting the fight. Since my Mom passed away over a week ago I've been struggling with her passing, painful eating, and lack of energy.  But I have been reading up and so many I would like to respond to personally.  Until than, please know my thoughts and best wishes are with you all. Such a strong, strong group of fantastic people here. Very Big Hugs to All.

Working on my 3rd month of post-treatment recovery.  What a truly up and down road towards recovery.  One Day at a Time has really taken on a new meaning. Like a box of chocolates, never KNOW what your going tp get. One day doing good, a positive, yet the next day or two, not so good.  According to recent scope & scan, throat/mouth NED, healing well, yet not home free for quite awhile.  The dry mouth is of course such a pain but at least the mucus is somewhat better.  No new sores, thankfully but the burning patches in the back of my mouth/throat and whole back of tongue are restricting me from moving forwards again with more solid foods.  Right now mostly just my store bought organic shakes ( 16 Gms protein, 250 calories).  Have tried to add Icecream for more calories but that often burns more. I could eat briefly Mac & Cheese, cream soups, mashed sweet & reg potatos, Fett Alfredo, pancakes and a little beef stew but now they burn like crazy during and after eating. Fluids restricted to water, hot tea, milk, a little Gaterade.  Unfortunately, have allergies to dairy, soy, eggs, almonds, oranges.  Kind of restricts amount I can take in. Can cause stomach upset and could be contributing to the burning mouth. Talked with ENT, Pain Specialist, Oral Dentist.  Gabapentin has been suggested, upping morphine to only at meal times, certain dental fluoride treatments, Vitamins B 12, Alpha Lipoic Acid, extra other supplements/vitamins but everyone has a different idea on how to do. Take one at a time, see how that works, etc.  Problem is, trying to do this is not helping the burning pain and lack of nourishment.  If I lose anymore weight, I will blow away. Anyone else experiencing this?  HELP.  I do have taste, though somethings taste stranger than before (yuck).  I'm hungrey and going burning pain crazy.

CivilMatt

the important message was NED, NED, NED!!!

Dd,

It took me 7 months to get back to eating most foods like a regular person.  During my 7 months I consumed lots of tomatoes and cucumbers with generous amounts of olive oil and my smoothies always had a shot of vegetable oil, each added needed calories.

I tried everything suggested by the H&N crew, but could not stand the texture and taste of most things.  I was trying everything, constantly.  I feel it is up to each of us to try, try, try!

As for tongue, mouth and  throat discomfort, I was a magic mouth wash junky.

I bet you beat my 7 months and return to the eating world sooner that I did.  Today at 4 years + post I still find improvements and enjoy eating immensely.

I had apple pie alamode last night and it was terrific!

Hang in there.

Matt

RottiesMom

Sorry

I am so sorry for the loss of your Mom.  I am almost 2 weeks (Tuesday will start my 3rd week), so I'm not much help when it comes to recovery.  But, my Doctor had me start gabapentin yesterday and will be on it all the way through my treatment and I'm guessing as long as i need it after.  Prayers you will feel better soon!

Joanne 

cardoza33

Its still early

My last day of treatment was Feb 3.  I was struggling big time until May.  In that months I made huge leaps and bounds.  Even now, I still have several smoothies during the day and ....slowly, eat a few meals a day.  Its not easy by any stretch and really annoying, but it ia getting better.  My tongue still has issues but not really painful anymore.  At 3 months I was really frustrated, but it got better.  Hang in there and just get the calories however you can get at this point and keep trying and it will get better.  I ate 4 hamburgers (one each month) w/ lettuce instead of a bun until I was finally able to get it down and tasted good this last try.  Just keep it up and realize you are really early still.

Drivingdaisy

RottiesMom said:

Sorry

I am so sorry for the loss of your Mom.  I am almost 2 weeks (Tuesday will start my 3rd week), so I'm not much help when it comes to recovery.  But, my Doctor had me start gabapentin yesterday and will be on it all the way through my treatment and I'm guessing as long as i need it after.  Prayers you will feel better soon!

Joanne 

Gabapentin

Hi Joanne, thank you for your thoughts. I have been following your journey and hope only the very best and as little pain as possible.  It's a hard journey but you can do it, I believe that.  Keep me posted how the Gabapentin works for you. Hugs Lisa

Drivingdaisy

CivilMatt said:

the important message was NED, NED, NED!!!

Dd,

It took me 7 months to get back to eating most foods like a regular person.  During my 7 months I consumed lots of tomatoes and cucumbers with generous amounts of olive oil and my smoothies always had a shot of vegetable oil, each added needed calories.

I tried everything suggested by the H&N crew, but could not stand the texture and taste of most things.  I was trying everything, constantly.  I feel it is up to each of us to try, try, try!

As for tongue, mouth and  throat discomfort, I was a magic mouth wash junky.

I bet you beat my 7 months and return to the eating world sooner that I did.  Today at 4 years + post I still find improvements and enjoy eating immensely.

I had apple pie alamode last night and it was terrific!

Hang in there.

Matt

Than you

Thank you Matt for your input.  I do realize I am in the early stages. Yes, I was so very happy for the NED.  My ENT did a scope to check to see how my throat was healing to find no signs of the original cancer.  When my chemo Dr received the report he wanted a CT scan to double check the whole area. All came back clean.  After such a horrI fic treatment it was such a blessing to hear.  Just being realistic and positive it stays that way.  They have agreed that I appear to also be suffering with "Burning Mouth Syndrome" but there are different ways to treat and they take time to see what works or doesn't.  Very hard to treat and painful especially trying to eating and drink. This can continue on for months, years with daily burning pain.  This is where my frustration and I guess depression is starting to take my positivity hostage.  I realize how extremely lucky I am but I need nourshment to progress.

slk2015

Sounds like what I have with oral lichen planus

For years, I had oral lichen planus which caused Burning Mouth Syndrome.  Much of what I tried to eat hurt like crazy.  I used to tell my husband when I got cranky that he should "wake up every morning and scald his mouth with hot coffee" and then get back to me (I get grumpy......).  As I have noted elsewhere, I have to eat.  So I would go through however many things it took till I could get something down.  If everything hurt, I went with the least painful.  Sometimes things got better, sometimes worse.   Now, the lichen planus has disappeared nearly and I don't have as much trouble.  I still put food back and change out frequently from what I thought I wanted.  Some things just don't work some days.  One day I can eat mashed potatoes, the next they hurt like crazy.  I finally just learned to roll with it.  That doesn't mean I don't still get mad when I can't eat, cry if I get highly frustrated and wish I could eat like I used to before all this stuff happened.  But I can't.  So I eat what I can and maybe tomorrow something else will work that didn't today.  Hopefully, with time, you'll lose the burning and be able to eat more normally.