swallowing

fasu1948

Any of you that lost your swallow because of radiation treatments, how did you get it back and what foods did you start with the get it back?

Pam M

Lost?
Did you lose your swallow completely? I could (and did) swallow water throughout my treatment. have your docs recommended anything? Physical therapy? Dilation? I did some swallowing exercises throughout most of treatment - so even though I wasn't eating food for a while, I was still using my mouth and throat muscles. I also had a dilation done when my PEG was removed - that helped, too. Good luck.

hawk711

Pam M said:

Lost?
Did you lose your swallow completely? I could (and did) swallow water throughout my treatment. have your docs recommended anything? Physical therapy? Dilation? I did some swallowing exercises throughout most of treatment - so even though I wasn't eating food for a while, I was still using my mouth and throat muscles. I also had a dilation done when my PEG was removed - that helped, too. Good luck.

you'll know when
Hi ya
I started eating jello, soup, yogurt at first. Swallowing is very individual to all of us. I couldn't swallow anything but I started with water, then the soft foods above. You'll know when to try new stuff. Just chase everything you eat with milk, it is a great flusher.
Keep trying everyday to eat, it took me 6 months to eat much and now at 15 months post I am eating a lot of good foods. Still no pizza, bread, pasta, but I eat meat, potatoes and veggies.
Keep the faith fasu, it will come back. Just slower that you'd like.
all the best,
STeve

fasu1948

Pam M said:

Lost?
Did you lose your swallow completely? I could (and did) swallow water throughout my treatment. have your docs recommended anything? Physical therapy? Dilation? I did some swallowing exercises throughout most of treatment - so even though I wasn't eating food for a while, I was still using my mouth and throat muscles. I also had a dilation done when my PEG was removed - that helped, too. Good luck.

Not completely. I still can
Not completely. I still can swallow saliva and I have been recently trying to swallow jello and pudding, which i think i have been successful with. I just have much pain while doing it and it lingers afterward.

fasu1948

hawk711 said:

you'll know when
Hi ya
I started eating jello, soup, yogurt at first. Swallowing is very individual to all of us. I couldn't swallow anything but I started with water, then the soft foods above. You'll know when to try new stuff. Just chase everything you eat with milk, it is a great flusher.
Keep trying everyday to eat, it took me 6 months to eat much and now at 15 months post I am eating a lot of good foods. Still no pizza, bread, pasta, but I eat meat, potatoes and veggies.
Keep the faith fasu, it will come back. Just slower that you'd like.
all the best,
STeve

Thickness/thiness
What about that? Did that make any difference to getting it down. Also, did the milk have any irritation in your throat?

Skiffin16

Clarity
OK, now that you have added alittle clarity, I'll provide some input as well.... Originally I didn't answer because I wasn't sure if you meant you completely lost the ability to swallow. That is a very real possibility from someone that dosen't use the muscles at all.

You are actually pretty much where you should be it sounds...many of us have had the major source of pain and complications from around the 3 - 4th week of rads, going out to several weeks post rads...you are still basically cooking for that period.

Now what it sounds like that most of us have had that you didn't mention are pain meds and solutions to help you get through it.

My main routine during that period was a teaspoon full of the thick lydocaine type numbing solution, liquid hydrocodone or liquid oxicotin. Next a big glass of water, 1 - 2 Ensure Plus, a few jarred DelMonte Peach Slices (for those muscles you mention), followed by more water. After all of that about 1/3 glass of water with a dissolved Percocet (for that pain that lingers which you mentioned).

They even gave me liquid Morphine (Roxanal), but it made me sick with no pian relieve.

After those weeks, I started on soft mushy types of food something that would sldie down easy with no lumps or grainy type pieces....

Best,
John

fasu1948

Skiffin16 said:

Clarity
OK, now that you have added alittle clarity, I'll provide some input as well.... Originally I didn't answer because I wasn't sure if you meant you completely lost the ability to swallow. That is a very real possibility from someone that dosen't use the muscles at all.

You are actually pretty much where you should be it sounds...many of us have had the major source of pain and complications from around the 3 - 4th week of rads, going out to several weeks post rads...you are still basically cooking for that period.

Now what it sounds like that most of us have had that you didn't mention are pain meds and solutions to help you get through it.

My main routine during that period was a teaspoon full of the thick lydocaine type numbing solution, liquid hydrocodone or liquid oxicotin. Next a big glass of water, 1 - 2 Ensure Plus, a few jarred DelMonte Peach Slices (for those muscles you mention), followed by more water. After all of that about 1/3 glass of water with a dissolved Percocet (for that pain that lingers which you mentioned).

They even gave me liquid Morphine (Roxanal), but it made me sick with no pian relieve.

After those weeks, I started on soft mushy types of food something that would sldie down easy with no lumps or grainy type pieces....

Best,
John

am i on track
my last radiation treatment was on april 15th. i'm trying to swallow water but it gags me so th routine you gave me for yourself won't work, at least right now. i'm trying to swallow pudding which works but hurts like hell. i'm taking 24 hr. acting morphine, ewhich i take once a day but i still experience pain throughout the day. it just varies in its intensity but has not been as bad as it was before this med. it obviously does not help when i swallow something. i see my docs in 2 weeks. i'll ask them about this. thanks, john.

Lelia

fasu1948 said:

am i on track
my last radiation treatment was on april 15th. i'm trying to swallow water but it gags me so th routine you gave me for yourself won't work, at least right now. i'm trying to swallow pudding which works but hurts like hell. i'm taking 24 hr. acting morphine, ewhich i take once a day but i still experience pain throughout the day. it just varies in its intensity but has not been as bad as it was before this med. it obviously does not help when i swallow something. i see my docs in 2 weeks. i'll ask them about this. thanks, john.

Have you tried small ice chips?
The swallow (speech) therapist told us that for many recovering from H&N rads, something small and solid is actually easier to swallow than liquid, which flows all over the place uncontrolled and easily gets caught in the swollen pockets of the burned throat/esophagus causing the 'choking' you describe.

Husband had final rads 4/29, two treatments that day, and you sound about right compared to where he is. There's another thread up today on this exact issue with another frustrated person and lots of good advice/feedback from folks here who understand.

Use the effortful swallow technique; if they didn't explain it PM me and I'll share what they gave us for exercises. Swallowing is an effortless act for normies and 'effortful' swallowing is a necessary and useful exercise as you wait for the rad burns to heal. Little, manageable ice chips are great to use on effortful swallow practice, you gotta keep the muscles working even though you can't really eat just yet.

As you RadDoc probably explained to you, you're still cooking from radiation for weeks after treatment concludes, rads are cumulative and you don't begin healing immediately. It's frustrating! But it'll get better.

sweetblood22

Lelia said:

Have you tried small ice chips?
The swallow (speech) therapist told us that for many recovering from H&N rads, something small and solid is actually easier to swallow than liquid, which flows all over the place uncontrolled and easily gets caught in the swollen pockets of the burned throat/esophagus causing the 'choking' you describe.

Husband had final rads 4/29, two treatments that day, and you sound about right compared to where he is. There's another thread up today on this exact issue with another frustrated person and lots of good advice/feedback from folks here who understand.

Use the effortful swallow technique; if they didn't explain it PM me and I'll share what they gave us for exercises. Swallowing is an effortless act for normies and 'effortful' swallowing is a necessary and useful exercise as you wait for the rad burns to heal. Little, manageable ice chips are great to use on effortful swallow practice, you gotta keep the muscles working even though you can't really eat just yet.

As you RadDoc probably explained to you, you're still cooking from radiation for weeks after treatment concludes, rads are cumulative and you don't begin healing immediately. It's frustrating! But it'll get better.

It would depend on why you
It would depend on why you cannot swallow, the course of action you should take. You need to know if you cannot swallow because you are swollen, or have radiation damage, or like me a stricture, or if it's the muscles or swallowing mechanism itself. If you can swallow pudding, that is a good sign. Keep trying to get as much liquids down and things like pudding or yogurt so you keep the muscles working. I agree, you are not that far out out treatment yet, so you are just now getting to the healing part.

Do you have magic swizzle or magic mouthwash to swish and swallow before meal times, as well as your 24 hr meds? Magic Swizzle can take some of the pain away so you may be able to swallow with out as much pain.

Have you tried the L-Glutamine? It will help you heal faster, and help with the burning.

If you still cannot seem to swallow you can see about a swallowing study. They will have you swallow stuff with barium on it and watch it go down to see if something is blocked. Swallowing exercises are a good idea. Cannot hurt. Keep stuff working.

I have had to be stretched three times. I still have issues with swallowing. My dinner took me over two hours tonight, but I managed chicken and roasted potatoes, which is a great challenge for me!

I started last year with things like bananas, avocados, poached egg (hot runny yolk), pureed veg like carrots, thick cream soups (and not canned processed crap from a can, it should be made with fresh veggies), very cooked oatmeal, smoothies, shakes (thicker liquids are often easier to swallow than thinner) try and give your mouth and throat time to heal, and don't push it too much. Believe me I know you are impatient. Not eating 9 months at all, and having my peg tube for 18 months was the greatest lesson in patience in my whole of 43 years. It prepared me patience wise to keep living with my 87 year old crazy and senile grandmother.

I've stopped praying for patience because I realized God will just kept testing me to make sure I learn it. Lol

fasu1948

Lelia said:

Have you tried small ice chips?
The swallow (speech) therapist told us that for many recovering from H&N rads, something small and solid is actually easier to swallow than liquid, which flows all over the place uncontrolled and easily gets caught in the swollen pockets of the burned throat/esophagus causing the 'choking' you describe.

Husband had final rads 4/29, two treatments that day, and you sound about right compared to where he is. There's another thread up today on this exact issue with another frustrated person and lots of good advice/feedback from folks here who understand.

Use the effortful swallow technique; if they didn't explain it PM me and I'll share what they gave us for exercises. Swallowing is an effortless act for normies and 'effortful' swallowing is a necessary and useful exercise as you wait for the rad burns to heal. Little, manageable ice chips are great to use on effortful swallow practice, you gotta keep the muscles working even though you can't really eat just yet.

As you RadDoc probably explained to you, you're still cooking from radiation for weeks after treatment concludes, rads are cumulative and you don't begin healing immediately. It's frustrating! But it'll get better.

exercises
THank you, Lelia. Yes, what are the exercises your husband got? You say he finished about 2 months ago and I finished about 2 1/2 months ago. Everybody tells me they effects of the rad, should be done but I still have pain in my throat; which, is exentuated when I swallow something. THey also say, just ignor the pain and keep swallowing because you have to do that. IS you husband doing anything more than ice chips? I've tried them but they too irritate my throat. I think I just have to bite the bullet and try swallowing whatever I want to try. I mean the pain eventually will lessen, I may gag which i can handle and my stomach may react adversely which eventually goes away. THanks for your suggestions. MY name is Nick

Kent Cass

fasu1948 said:

exercises
THank you, Lelia. Yes, what are the exercises your husband got? You say he finished about 2 months ago and I finished about 2 1/2 months ago. Everybody tells me they effects of the rad, should be done but I still have pain in my throat; which, is exentuated when I swallow something. THey also say, just ignor the pain and keep swallowing because you have to do that. IS you husband doing anything more than ice chips? I've tried them but they too irritate my throat. I think I just have to bite the bullet and try swallowing whatever I want to try. I mean the pain eventually will lessen, I may gag which i can handle and my stomach may react adversely which eventually goes away. THanks for your suggestions. MY name is Nick

Nick
You're worse-off than I was, I'm sorry to say, if swallowing water is too much for you. Even in the worst of times I was able to take sips of water, and the greatest of relief came from ice chips melting in the mouth, and swallowing that liquified ice. But those worst of times were only during treatment. Sweet had a longer recovery time, like you are describing. Kinda hard to fathom why pudding would be easier than water in sips. You must keep the swallowing function going- whatever works.

kcass

Skiffin16

fasu1948 said:

am i on track
my last radiation treatment was on april 15th. i'm trying to swallow water but it gags me so th routine you gave me for yourself won't work, at least right now. i'm trying to swallow pudding which works but hurts like hell. i'm taking 24 hr. acting morphine, ewhich i take once a day but i still experience pain throughout the day. it just varies in its intensity but has not been as bad as it was before this med. it obviously does not help when i swallow something. i see my docs in 2 weeks. i'll ask them about this. thanks, john.

Magic Mouthwash
As Sweetblood mentioned....that's the thick lydocaine type solution I referenced above, or liquid hydrocodon or oxitcotin. The reason that I took a teaspoon of one of those before everything else is that it numbed my throat for about 5 - 10 minutes...long enough to get everything else down with minimal pain. That followed up with dissolved percocets for the pain to come after and knock the edge off.

Everything was painful for me to swallow without that procedure also, even water.

I couldn't swallow anything without it hurting at some level and taking the meds first for about seven weeks.

JG

Hondo

Skiffin16 said:

Magic Mouthwash
As Sweetblood mentioned....that's the thick lydocaine type solution I referenced above, or liquid hydrocodon or oxitcotin. The reason that I took a teaspoon of one of those before everything else is that it numbed my throat for about 5 - 10 minutes...long enough to get everything else down with minimal pain. That followed up with dissolved percocets for the pain to come after and knock the edge off.

Everything was painful for me to swallow without that procedure also, even water.

I couldn't swallow anything without it hurting at some level and taking the meds first for about seven weeks.

JG

Hi fasu
I did not completely loose all my swallowing ability I was able to swallow watered down grits and just about lived on it for the last 2 or 3 weeks of my treatment. I did have a lot of pain and like others have said used magic mouthwash but it too I had to water down as it was just too thick.

Wishing you the best
Hondo

ian1511

There is HOPE
I finished radiation on May 25. I was totally feeding tube dependent, except for water, sipped until about 2 weeks ago. I am not forcing, but "encouraging" myself to try anything that "feels" right. Initially, the oral tissues were just to raw for anything causing friction to go down. As many say here, "we're still cooking"!

Temperature was a big issue, but has been improving. I can now drink cold milk and water. I could not before. I still cannot tolerate hot food. To date, I've been doing a banana, milk and protein powder shake. Goes down very well. Milk, as stated above, is a great and soothing chaser. Oatmeal with banana, cooled down and slightly soupy works. I am able to actually chew on a pear and dried apricot and swallow it, followed by water. Clam chowder is also doable. I was able to bake a nice piece of cod with a miso/honey glaze (2 tbl each mixed). I ate the fish with stir fried zucchini (overcooked to assist swallowing). The zucchini gave just enough moisture to help swallow each small piece of fish. The fish, if not overcooked, is moist and flaky. Yesterday, I got adventurous and made a tuna casserole and made it slightly soupy. I was able to eat about a half cup before I had to quit. It seemed to irritate the left side of my throat and the roof of my mouth. I think I can eat the rest of the casserole, if I soup it. Be very conscious to continue your tube feeding to make up for what you do not take in orally, or you will lose weight, as I found out initially.

Taste has also returned. I can taste enough salt and sour (30-40%), none-to-little sweet. Interestingly, the taste diminishes if I continuosly eat a food without washing the palette. After a wash with water, the taste is stronger again.

My mouth still feels dry, so water is my constant companion.

Skiffin16

ian1511 said:

There is HOPE
I finished radiation on May 25. I was totally feeding tube dependent, except for water, sipped until about 2 weeks ago. I am not forcing, but "encouraging" myself to try anything that "feels" right. Initially, the oral tissues were just to raw for anything causing friction to go down. As many say here, "we're still cooking"!

Temperature was a big issue, but has been improving. I can now drink cold milk and water. I could not before. I still cannot tolerate hot food. To date, I've been doing a banana, milk and protein powder shake. Goes down very well. Milk, as stated above, is a great and soothing chaser. Oatmeal with banana, cooled down and slightly soupy works. I am able to actually chew on a pear and dried apricot and swallow it, followed by water. Clam chowder is also doable. I was able to bake a nice piece of cod with a miso/honey glaze (2 tbl each mixed). I ate the fish with stir fried zucchini (overcooked to assist swallowing). The zucchini gave just enough moisture to help swallow each small piece of fish. The fish, if not overcooked, is moist and flaky. Yesterday, I got adventurous and made a tuna casserole and made it slightly soupy. I was able to eat about a half cup before I had to quit. It seemed to irritate the left side of my throat and the roof of my mouth. I think I can eat the rest of the casserole, if I soup it. Be very conscious to continue your tube feeding to make up for what you do not take in orally, or you will lose weight, as I found out initially.

Taste has also returned. I can taste enough salt and sour (30-40%), none-to-little sweet. Interestingly, the taste diminishes if I continuosly eat a food without washing the palette. After a wash with water, the taste is stronger again.

My mouth still feels dry, so water is my constant companion.

Fish Guy
LOL, just teasing, I love fish and going fishing....

A lot of what you said above was very similar to me...sweet is still lacking at times on certain things (Ice Cream).... Cold was a problem at first also.

I too would lose the flavor after a bite or so, some coming back with a wash of water. Soups and sauces seemed most notable for that.

Two years out now, nearly 90%+ of both taste and saliva have returned....

Best,
John

fasu1948

ian1511 said:

There is HOPE
I finished radiation on May 25. I was totally feeding tube dependent, except for water, sipped until about 2 weeks ago. I am not forcing, but "encouraging" myself to try anything that "feels" right. Initially, the oral tissues were just to raw for anything causing friction to go down. As many say here, "we're still cooking"!

Temperature was a big issue, but has been improving. I can now drink cold milk and water. I could not before. I still cannot tolerate hot food. To date, I've been doing a banana, milk and protein powder shake. Goes down very well. Milk, as stated above, is a great and soothing chaser. Oatmeal with banana, cooled down and slightly soupy works. I am able to actually chew on a pear and dried apricot and swallow it, followed by water. Clam chowder is also doable. I was able to bake a nice piece of cod with a miso/honey glaze (2 tbl each mixed). I ate the fish with stir fried zucchini (overcooked to assist swallowing). The zucchini gave just enough moisture to help swallow each small piece of fish. The fish, if not overcooked, is moist and flaky. Yesterday, I got adventurous and made a tuna casserole and made it slightly soupy. I was able to eat about a half cup before I had to quit. It seemed to irritate the left side of my throat and the roof of my mouth. I think I can eat the rest of the casserole, if I soup it. Be very conscious to continue your tube feeding to make up for what you do not take in orally, or you will lose weight, as I found out initially.

Taste has also returned. I can taste enough salt and sour (30-40%), none-to-little sweet. Interestingly, the taste diminishes if I continuosly eat a food without washing the palette. After a wash with water, the taste is stronger again.

My mouth still feels dry, so water is my constant companion.

Bite the bullet
THank you, Ian, John, Hondo and others on your advice and suggeations. I guess this is what I have to do. I mean I just have to tolerate the pain to keep swallowing. I will take the mouthwash to try and numb my throat before though. I also found that my throat really gives me pain in the night if I've been swallowing that day. Anybody experience that? On temps, is it that some temps will irritate the throat more than others?

Hondo

fasu1948 said:

Bite the bullet
THank you, Ian, John, Hondo and others on your advice and suggeations. I guess this is what I have to do. I mean I just have to tolerate the pain to keep swallowing. I will take the mouthwash to try and numb my throat before though. I also found that my throat really gives me pain in the night if I've been swallowing that day. Anybody experience that? On temps, is it that some temps will irritate the throat more than others?

Dry mouth at night
I am not sure if you can handle it just yet, so might want to check with your doctor first. I use a mouth spray called Stoppers 4 for dry mouth, I been using it now for about 4 years and it help to keep my mouth from becoming too dry at night while I sleep. I am not sure if it will help you but it is worth a try.

Take care
Hondo

fasu1948

Hondo said:

Dry mouth at night
I am not sure if you can handle it just yet, so might want to check with your doctor first. I use a mouth spray called Stoppers 4 for dry mouth, I been using it now for about 4 years and it help to keep my mouth from becoming too dry at night while I sleep. I am not sure if it will help you but it is worth a try.

Take care
Hondo

No dry mouth
I don't have dry mouth at anytime. THere is saliva in my mouth 24/7, most of the time too much and sometimes thick. I also do get the mucus which I cough up at night a lot too.

Hq18

sweetblood22 said:

It would depend on why you
It would depend on why you cannot swallow, the course of action you should take. You need to know if you cannot swallow because you are swollen, or have radiation damage, or like me a stricture, or if it's the muscles or swallowing mechanism itself. If you can swallow pudding, that is a good sign. Keep trying to get as much liquids down and things like pudding or yogurt so you keep the muscles working. I agree, you are not that far out out treatment yet, so you are just now getting to the healing part.

Do you have magic swizzle or magic mouthwash to swish and swallow before meal times, as well as your 24 hr meds? Magic Swizzle can take some of the pain away so you may be able to swallow with out as much pain.

Have you tried the L-Glutamine? It will help you heal faster, and help with the burning.

If you still cannot seem to swallow you can see about a swallowing study. They will have you swallow stuff with barium on it and watch it go down to see if something is blocked. Swallowing exercises are a good idea. Cannot hurt. Keep stuff working.

I have had to be stretched three times. I still have issues with swallowing. My dinner took me over two hours tonight, but I managed chicken and roasted potatoes, which is a great challenge for me!

I started last year with things like bananas, avocados, poached egg (hot runny yolk), pureed veg like carrots, thick cream soups (and not canned processed crap from a can, it should be made with fresh veggies), very cooked oatmeal, smoothies, shakes (thicker liquids are often easier to swallow than thinner) try and give your mouth and throat time to heal, and don't push it too much. Believe me I know you are impatient. Not eating 9 months at all, and having my peg tube for 18 months was the greatest lesson in patience in my whole of 43 years. It prepared me patience wise to keep living with my 87 year old crazy and senile grandmother.

I've stopped praying for patience because I realized God will just kept testing me to make sure I learn it. Lol

Your experience has helped
Your experience has helped me. I finished my treatment on 5/18 and am getting really fustrated with not being able to eat food at this point. I am losing my patience really fast and really want to be able to taste food again and have it not burn my throat. It appears from your experience I could be a while longer, ugh! But I definetly agree that God will continue to test me because this year has been a huge test and if I pass I believe it will only make me stronger.

Hq18

fasu1948 said:

Bite the bullet
THank you, Ian, John, Hondo and others on your advice and suggeations. I guess this is what I have to do. I mean I just have to tolerate the pain to keep swallowing. I will take the mouthwash to try and numb my throat before though. I also found that my throat really gives me pain in the night if I've been swallowing that day. Anybody experience that? On temps, is it that some temps will irritate the throat more than others?

fasu1948-I have had some of
fasu1948-I have had some of the same issues as you. I have noticed that my throat hurts more at night on days that I have swallowed more or was talking more that day. To me it feels like that the back part of my tongue and mouuth swells up. It gets bad to where my own saliva/water even burns going down. I dont have any solutions yet at this point. Hang in there and will let you know if I hear of anything.

Hq18

fasu1948 said:

No dry mouth
I don't have dry mouth at anytime. THere is saliva in my mouth 24/7, most of the time too much and sometimes thick. I also do get the mucus which I cough up at night a lot too.

I have this issue as well!
I have this issue as well! I find myself alot of times having to spit more often because how fast it does produce and how thick it feels. Have you had any solutions to this? I have not heard anything as of yet and this has been adding to my fustration. Thanks!