Sore Tongue

ditto1

Maybe I should know, after all I asked my RAD and ONC doc about the left side of my tongue but neither had a absolute answer. Its a sore that still persists 5 weeks after rads. I was dx with BOT with multiple lymph nodes. 33 RADS 2 Cisplantin 9 Erbitux / just not sure why my tongue was slightly disfigured on the left side, its also the side that swelled a couple of times and caused us to go to the ER when 1st dx. It swelled twice during treatment but now its just like a sore that wont heal and when I eat or drink its where I feel the discomfort. My question is to anyone who was dx with BOT did your tongue seem to be an issue, my RAD doc speculated that sometimes its the nerves at the base that may be affecting the tongue in the mouth. Just seeems the side of my tongue should be healing by now and its not. I go in for CT on 3rd of October so wont be long to see if the cancer was taken care of but still curious about the tongue sores. Any thoughts from you all BOT dx or otherwise will be appreciated.

phrannie51

If I'm understanding right.....
it's sore, but you can't actually see a sore? It hurts like the nerves are jangling inside? I have the same problem with my tongue, but it's a "band" about 3/4" wide across the middle...it hurts worse when I'm cold. When I told the Onc that my tongue hurts when I'm cold he looked at me like "WHAT???". It comes and goes, hurts when I eat, but it's an "inside the tongue" hurt, not stingy, it's achey....and it's very distrating. I thought maybe it was another gift from rads.

I didn't have a BOT, mine was NPC....but we both had rads and chemo....that maybe it's a left over from one of those?

p

hwt

phrannie51 said:

If I'm understanding right.....
it's sore, but you can't actually see a sore? It hurts like the nerves are jangling inside? I have the same problem with my tongue, but it's a "band" about 3/4" wide across the middle...it hurts worse when I'm cold. When I told the Onc that my tongue hurts when I'm cold he looked at me like "WHAT???". It comes and goes, hurts when I eat, but it's an "inside the tongue" hurt, not stingy, it's achey....and it's very distrating. I thought maybe it was another gift from rads.

I didn't have a BOT, mine was NPC....but we both had rads and chemo....that maybe it's a left over from one of those?

p

Sore
My surgery was actually the jaw so I attribute the soreness on my tongue to the rads/chemo..mostly blame the rads. I do not have a physical sore just burning and I finished tx mid-May. Sometimes feels like velcroe, little stickery things. Had thrush 3 or 4 times and it is a similar burning but not as bad. Follow-up with radiologist last week, he said he saw slight irritation and suggested swish & swallow once a day.

ditto1

hwt said:

Sore
My surgery was actually the jaw so I attribute the soreness on my tongue to the rads/chemo..mostly blame the rads. I do not have a physical sore just burning and I finished tx mid-May. Sometimes feels like velcroe, little stickery things. Had thrush 3 or 4 times and it is a similar burning but not as bad. Follow-up with radiologist last week, he said he saw slight irritation and suggested swish & swallow once a day.

No surgery
for final clarification, thanks for your replies. Hey P51, sometimes these Docs should just say really when we decribe something, because it sure aint in our heads. I hope time will heal the tongue, its not a sore you can see, it is just a rough patch on the left side of my tongue, but it really likes to lite up when certain foods or drinks hit it. In general its not a big issue or that painful, but as we know this cancer adventure makes us question about everything our bodies throw at us.

CivilMatt

say ahhh
Hi ditto1,

Tongue an issue? Tongue was the source and reason for this marvelous adventure. Soreness now days due to eating cayenne pepper. I sprinkle it on tomatoes with a little salt and black pepper and olive oil. Wow, it really makes my taste buds fire (in a real good way). I am doing the tomato thing everyday.

Directly following treatments my tongue was sore, but I figured that was due to rads (also why my voice is still raspy, but getting better). The ENT looked at my tongue twice since rads and gave me the “all clear” signal. If it persists have it checked again, otherwise I attribute it to the gift that keeps on giving.

Best,

Matt

fisrpotpe

giving
rads as stated not only give side effects long and long long term also know as "the gift that keeps on giving"

rads also continue to work for an unknown exact duration after treatments are finished. my uneducated guess is 6-9 weeks they continue to work. but for you lets say they have worked for 4 weeks. then add in the thought of healing takes longer than the old normal of two weeks. add the thought of 4 weeks continue working with 4 weeks longer healing it might take 8 plus weeks to feel something like your new normal feeling is going to be. keep in mind, at least my thoughts is it will take 18-24 months till you see and feel your new normal to be at 95% complete.

so on short term the gift keeps working the pain mode

hope it gets better soon and it will at some point.

prayers for wisdom that slow recovery is better than no recovery

john

Sam999

fisrpotpe said:

giving
rads as stated not only give side effects long and long long term also know as "the gift that keeps on giving"

rads also continue to work for an unknown exact duration after treatments are finished. my uneducated guess is 6-9 weeks they continue to work. but for you lets say they have worked for 4 weeks. then add in the thought of healing takes longer than the old normal of two weeks. add the thought of 4 weeks continue working with 4 weeks longer healing it might take 8 plus weeks to feel something like your new normal feeling is going to be. keep in mind, at least my thoughts is it will take 18-24 months till you see and feel your new normal to be at 95% complete.

so on short term the gift keeps working the pain mode

hope it gets better soon and it will at some point.

prayers for wisdom that slow recovery is better than no recovery

john

I am almost 11 weeks post
I am almost 11 weeks post rad but still see a sore sometimes on my surgery site on tongue and sometimes at the back of throat. I was about to post question on this. I am not sure this normalm or a bit longer than normal.

D Lewis

tongue sores
Tongue sores do persist for a long time after treatment ends. The sores also come and go, for a number of months. I had sores along both sides of my tongue, all through treatment and for a few months afterwards. These sore have since subsided to a whitish scarring that runs down both sides of my tongue. My guess was that I was burned there, as a result of radiation scatter from my dental work, and I am assuming the scars will be permanent.

A quick internet search reveals that sour taste buds line the sides of the tongue and sweet taste buds are located near the front of the tongue. Soooo, why can't I taste sweet? And, why can I taste sour?

Deb

longtermsurvivor

with my BOT cancer
both sides of my tongue were sore for a very long time. Nothing to see, vut sore enough to limit speech. This went on for maybe a year. Really a problem because my profession required I talk all day long. Caused a big fight twixt me and my disability insurance company, too. I won that fight. Eventually, it all just faded away, but I remember wondering if it would ever get better. A lot of this discomfort may have been worsened by the fact I had dey mouth, and had to talk so much.


Pat

ditto1

longtermsurvivor said:

with my BOT cancer
both sides of my tongue were sore for a very long time. Nothing to see, vut sore enough to limit speech. This went on for maybe a year. Really a problem because my profession required I talk all day long. Caused a big fight twixt me and my disability insurance company, too. I won that fight. Eventually, it all just faded away, but I remember wondering if it would ever get better. A lot of this discomfort may have been worsened by the fact I had dey mouth, and had to talk so much.


Pat

THANKS FOLKS
this is what makes this site so special, the fact others have lived out most questions we have, Deb and Pat you indicated it was the sides of your tongue, that is exactly my situation, more pain on left side vs right. I also have a hard time sticking my tongue out as far as I could I guess time will be a resolve as it is so many times.

longtermsurvivor

ditto1 said:

THANKS FOLKS
this is what makes this site so special, the fact others have lived out most questions we have, Deb and Pat you indicated it was the sides of your tongue, that is exactly my situation, more pain on left side vs right. I also have a hard time sticking my tongue out as far as I could I guess time will be a resolve as it is so many times.

Yup
I had forgotten this. It was like someone had taken a file and filed away on the side of my tongue. Yet you couldn't see anything. That's why the disability insurance company thought they could deny benefits. It really was kinda miserable. But it kept me from talking too much, lol. OTOH, the short tongue thing might be more permanent. Fibrosis causes forshortening, and that can be forever. I really have that problem now after two doses of rads and grafting to the floor of my mouth. Geez, can't stick my tongue out at all. Cant whistle either, which is rally a bummer.

phrannie51

ditto1 said:

THANKS FOLKS
this is what makes this site so special, the fact others have lived out most questions we have, Deb and Pat you indicated it was the sides of your tongue, that is exactly my situation, more pain on left side vs right. I also have a hard time sticking my tongue out as far as I could I guess time will be a resolve as it is so many times.

Can't stick my tongue out either.....
it's way to sore at the back where the tongueis attached kinda where my jaws are hinged...about all I can do is lick my lips...

p

D Lewis

phrannie51 said:

Can't stick my tongue out either.....
it's way to sore at the back where the tongueis attached kinda where my jaws are hinged...about all I can do is lick my lips...

p

Wow Phrannie...
You can lick your lips? Kinda hard for me to do, with no spit.

I did have a really fibrous tongue for quite a while. It felt like a chunk of wood in my mouth, and I talked kinda funny. Couldn't even move my tongue around in my mouth. That has improved quite a bit. I can now actually run my tongue around over my teeth (it STICKS, but I can do it). Also, I can stick my tongue out now. So, fear not, there will be improvement over time.

Deb (sadly, still with beef jerky tongue...)

Tim6003

D Lewis said:

Wow Phrannie...
You can lick your lips? Kinda hard for me to do, with no spit.

I did have a really fibrous tongue for quite a while. It felt like a chunk of wood in my mouth, and I talked kinda funny. Couldn't even move my tongue around in my mouth. That has improved quite a bit. I can now actually run my tongue around over my teeth (it STICKS, but I can do it). Also, I can stick my tongue out now. So, fear not, there will be improvement over time.

Deb (sadly, still with beef jerky tongue...)

BOT here...
I "WAS" BOT cancer (stage III)and my tongue hurt on the opposite side of where the tumor was FOREVER it seemed. My tumor was on my left side and the waaayy back of my tongue (over the edge and not visible) hurt like the dickens on the right side....I got off all pain meds 3.5 months after last rad, then got back on them a month later bc the "pain" in that area of my tongue was misery. The scopes kept coming back clear, and my CT was clear...so as others said above...sometimes it takes longer. Just a couple of weeks ago that pain finally left...none at all now. I made the remark to my wife that it is WONDERFUL not feeling that pain anymore. I have a stash of 50 Ultram pain pills I had filled on 8-5-12 and of the 50 pills I still have 30 left. I was having to take 2 a day (one am and one later evening) ...I have not had a pain pill in over a week. And I am 8 months out from last rad.

I too have what looks to be perm. swelling that may or may not go down, oncologist thinks alot of that is to stay. My voice is super raspy and I have really dry mouth.

Like Pat I my profession requires I talk ALL day hour after hour ....maybe as Pat said for him, that too is why I was taking so long to get rid of the pain.

Here is how I described my pain to the doc.

It feels like I am taking an alcohol wipe and wiping it over a cut in my tongue
It feels like a deep, hard, pain ...and it just would not go away.

Certainly affected my eating.

My wife was soooo happy I went back on pain meds bc she said I was like one of those characters you see on that "snickers / hungry" commercial...I'd be all grumpy and just a pill (no pun intended) to be with until I got back on my pain meds).

My wife brought new meaning to the phrase "take a pill" when I would get all grumpy on her ...but she still loves me.

It will get better!!!!

Tim

ditto1

Tim6003 said:

BOT here...
I "WAS" BOT cancer (stage III)and my tongue hurt on the opposite side of where the tumor was FOREVER it seemed. My tumor was on my left side and the waaayy back of my tongue (over the edge and not visible) hurt like the dickens on the right side....I got off all pain meds 3.5 months after last rad, then got back on them a month later bc the "pain" in that area of my tongue was misery. The scopes kept coming back clear, and my CT was clear...so as others said above...sometimes it takes longer. Just a couple of weeks ago that pain finally left...none at all now. I made the remark to my wife that it is WONDERFUL not feeling that pain anymore. I have a stash of 50 Ultram pain pills I had filled on 8-5-12 and of the 50 pills I still have 30 left. I was having to take 2 a day (one am and one later evening) ...I have not had a pain pill in over a week. And I am 8 months out from last rad.

I too have what looks to be perm. swelling that may or may not go down, oncologist thinks alot of that is to stay. My voice is super raspy and I have really dry mouth.

Like Pat I my profession requires I talk ALL day hour after hour ....maybe as Pat said for him, that too is why I was taking so long to get rid of the pain.

Here is how I described my pain to the doc.

It feels like I am taking an alcohol wipe and wiping it over a cut in my tongue
It feels like a deep, hard, pain ...and it just would not go away.

Certainly affected my eating.

My wife was soooo happy I went back on pain meds bc she said I was like one of those characters you see on that "snickers / hungry" commercial...I'd be all grumpy and just a pill (no pun intended) to be with until I got back on my pain meds).

My wife brought new meaning to the phrase "take a pill" when I would get all grumpy on her ...but she still loves me.

It will get better!!!!

Tim

Thanks Tim and
all of you for your replies. I guess as I said earlier we just get skittish over things until we know where we stand with the cancer, which I will not know until Oct 3rd. I know my mouth has been extremely dry recently at nite while sleeping to the point my tongue sticks to the top of my mouth. This morning I woke up and seems my tongue just felt different so I did a self exam and in my mind it just seems different so you start to worry.. well after getting up and getting some fluids in me and just chilling my thoughts I will assume its in my mind. I really hate the waiting game but I also know when I go for the CT the false positives people talk about. Maybe the biggest DA of the day is I just want to hear the words NED. Dont WE ALL.