extreme dry mouth wile sleeping

tmckelve

 

Hello all,

 I have stage 4 colorectal cancer and have been going thru chemo. I have only three sessions to go. I’ve been very lucky and the side effects have been minimal. With that said the treatment team has switched me to Folfox 6 from Folfox 5, I had bad dry mouth on the 5 but now on six it’s 10 times worse and has given me mouth sores. I wake up 2 to 3 times a night and my mouth is so dry my tong is completely dried out. I have a bottle of cold water and a tube of Biotene dry mouth gel beside my bed I sip on the water and re-apply the gel but it is getting worse. I hoping one of you can tell me what to do about this from similar experiences. If this continues I’m going to have to take a break from the chemo so I can heal but with only three more to go I just want this to be over. Please help if you can.

Tom

Trubrit

Stick it out

and I'm not talking about your tongue.

I hope you can make it through the next three treatments. Stopping or postponing is disheartening.

I also had, and sorry to tell you, still at time have, chronic dry mouth. I still wake up during the night, and my tongue is literally stuck to the roof of my mouth. I keep a big bottle of water by my bedside, which then creates several trips to the bathroom.  I never sleep solid through the night anymore. 

The only thing that I have found is to watch what I eat, and when the dry mouth is worse. For me it seems to be if I eat too much sugar or salt.  Of course, you are still in treatment, so it is probably the chemo and will not be helped much by watching what you eat. Give it a whirl though, and see if its worse after certain foods. 

When I had the mouth sores, I used a combination of warm water, salt and baking soda, swished that around my mouth and spat it out. I did it morning and night. It worked for the most part. My Oncologist suggested I do it every day, and if I had done it every day, I actually think I would not have had mouth sores. 

Good luck!

Tru

 

JanJan63

I haven't had it during chemo

I haven't had it during chemo but I had it terribly after having had a blood clot/cardiac arrest/stroke/coma situation. I'd wake up in the ICU and my tongue felt like it didn't belong to me, like a dead reptile sitting in my mouth. I was terrified that it would die or something and I wouldn't have a tongue anymore. It was because I was sleeping with my mouth open which I never normally do. They gave me Biotene for it but the effects didn't last long. They also tried hydrating my room but that didn't help, either. As I got better and was able to use my arms (I was paralyzed for some time after waking up from the coma) I could drink something and it eventually went away. But it was a horrible feeling while it lasted. Which is totally not helpful in any way other than that I sympathise with you. I was on Folfox when it happened.

For whatever it's worth I've had a geographic tongue off and on since all this started. My dentist thinks it's from the chemo. It can get really sensitive like I've burned it or been eating something sour.

Jan 

PamRav

I used

Xylimelts. They helped.  It's a mint tasting tablet that adheres gently to your inside cheek and stimulate salvia production.  It's over the counter in drugstores. 

Pam 

 

 

 

 

Trubrit

JanJan63 said:

I haven't had it during chemo

I haven't had it during chemo but I had it terribly after having had a blood clot/cardiac arrest/stroke/coma situation. I'd wake up in the ICU and my tongue felt like it didn't belong to me, like a dead reptile sitting in my mouth. I was terrified that it would die or something and I wouldn't have a tongue anymore. It was because I was sleeping with my mouth open which I never normally do. They gave me Biotene for it but the effects didn't last long. They also tried hydrating my room but that didn't help, either. As I got better and was able to use my arms (I was paralyzed for some time after waking up from the coma) I could drink something and it eventually went away. But it was a horrible feeling while it lasted. Which is totally not helpful in any way other than that I sympathise with you. I was on Folfox when it happened.

For whatever it's worth I've had a geographic tongue off and on since all this started. My dentist thinks it's from the chemo. It can get really sensitive like I've burned it or been eating something sour.

Jan 

I've never heard of....

geographic tongue

My tongue has been white ever since chemo. It is permanently damaged, but doesn't seem to inhibit my taste buds. 

I had uncontrolled Thrush during chemo. They tried every medication at every strenth, but it didn't work until I stopped treatments. So, my guess is that is what caused the white tongue. I think it looks horrible when I talk, but I'm not looking at it, so whatever. 

Tru

JanJan63

Trubrit said:

I've never heard of....

geographic tongue

My tongue has been white ever since chemo. It is permanently damaged, but doesn't seem to inhibit my taste buds. 

I had uncontrolled Thrush during chemo. They tried every medication at every strenth, but it didn't work until I stopped treatments. So, my guess is that is what caused the white tongue. I think it looks horrible when I talk, but I'm not looking at it, so whatever. 

Tru

It has white areas and red

It has white areas and red areas and pink areas and they have crooked edges so it kind of looks like a map. Sometimes it has white patches that don't come off. It looks like it's cracked but it's not. It's weird. And often it's sore or sensitive.

Jan

tmckelve

PamRav said:

I used

Xylimelts. They helped.  It's a mint tasting tablet that adheres gently to your inside cheek and stimulate salvia production.  It's over the counter in drugstores. 

Pam 

 

 

 

 

Xylimelts.

Thanks Pam ,

i have researched youe sujestion and will try them. It will feel good to get a full nights sleep.

PhillieG

Trubrit said:

Stick it out

and I'm not talking about your tongue.

I hope you can make it through the next three treatments. Stopping or postponing is disheartening.

I also had, and sorry to tell you, still at time have, chronic dry mouth. I still wake up during the night, and my tongue is literally stuck to the roof of my mouth. I keep a big bottle of water by my bedside, which then creates several trips to the bathroom.  I never sleep solid through the night anymore. 

The only thing that I have found is to watch what I eat, and when the dry mouth is worse. For me it seems to be if I eat too much sugar or salt.  Of course, you are still in treatment, so it is probably the chemo and will not be helped much by watching what you eat. Give it a whirl though, and see if its worse after certain foods. 

When I had the mouth sores, I used a combination of warm water, salt and baking soda, swished that around my mouth and spat it out. I did it morning and night. It worked for the most part. My Oncologist suggested I do it every day, and if I had done it every day, I actually think I would not have had mouth sores. 

Good luck!

Tru

 

Tongue Humor

VERY funny comment! I also get dry mouth. Then if I drink a lot of water, I still have the dry mouth and I also have to pee a lot. Try to hang in there
-phil

sdatorand

bleeding from mouth at night

I have mouth sores and I am on 5FU as someone mentioned. The problem I have is my mouth gets dry at night and it drys out the sors to the point they bleed. I am tired of switching my pillow over with one that is not bloody. Anyone have any suggestions?

sdatorand

Trubrit said:

Stick it out

and I'm not talking about your tongue.

I hope you can make it through the next three treatments. Stopping or postponing is disheartening.

I also had, and sorry to tell you, still at time have, chronic dry mouth. I still wake up during the night, and my tongue is literally stuck to the roof of my mouth. I keep a big bottle of water by my bedside, which then creates several trips to the bathroom.  I never sleep solid through the night anymore. 

The only thing that I have found is to watch what I eat, and when the dry mouth is worse. For me it seems to be if I eat too much sugar or salt.  Of course, you are still in treatment, so it is probably the chemo and will not be helped much by watching what you eat. Give it a whirl though, and see if its worse after certain foods. 

When I had the mouth sores, I used a combination of warm water, salt and baking soda, swished that around my mouth and spat it out. I did it morning and night. It worked for the most part. My Oncologist suggested I do it every day, and if I had done it every day, I actually think I would not have had mouth sores. 

Good luck!

Tru

 

What was the ratio of salt

What was the ratio of salt and baking soda?

Pamcakes

DH completed 12 cycles of

DH completed 12 cycles of folfox 5, Avastin then 46ish hours of 5 Fupump. Now on 2000mg Xeloda am and pm on 7 days iwith Avastin then 7 off. He has completed 12 of the first chemo min and just one of the new mix. with 11 to go.We read about the bioten products(spelling??) when first preparing for his chemo. Started using it and after 12 cycles can say DH still has no cavities. Sorry, got off topic, these products are supposed to help with dry mouth as well( per dentist dry mouth also causes tooth decay). DH uses the tooth paste, mouth wash and when chemo called for it the mouth spray. DH is 38 stage 4. No mouth sores, thrash nothing. not sure if you will have the same results, but so far so good for hubby.

Annabelle41415

JanJan63 said:

I haven't had it during chemo

I haven't had it during chemo but I had it terribly after having had a blood clot/cardiac arrest/stroke/coma situation. I'd wake up in the ICU and my tongue felt like it didn't belong to me, like a dead reptile sitting in my mouth. I was terrified that it would die or something and I wouldn't have a tongue anymore. It was because I was sleeping with my mouth open which I never normally do. They gave me Biotene for it but the effects didn't last long. They also tried hydrating my room but that didn't help, either. As I got better and was able to use my arms (I was paralyzed for some time after waking up from the coma) I could drink something and it eventually went away. But it was a horrible feeling while it lasted. Which is totally not helpful in any way other than that I sympathise with you. I was on Folfox when it happened.

For whatever it's worth I've had a geographic tongue off and on since all this started. My dentist thinks it's from the chemo. It can get really sensitive like I've burned it or been eating something sour.

Jan 

Tongue

Both my dad and son have a geographical tongue but it is due to heredity for them.  It can be very sensitive for them if the spots tend to open up.  It is weird looking though.  My son has a very hard time eating tomatoes and he loves them.  Hope yours improves.

Kim

Annabelle41415

Try Miracle Mouthwash

For some the Miracle Mouthwash will help.  It helped me with mouth sores.  You can only get this from your oncologist office or pharmacy as a CVS has no clue what you are talking about.  It helped me big time, but I'm not sure if it will help with all mouth situations - it's worth a try though.  Hope you feel better soon.

Kim