I have tagged to other topics here for several weeks on my fight with having pain swallowing and trying to eat things, getting frustrated, giving up, trying again, etc. I was and am still having some mouth pain on this one part of my tongue--actually on the opposite side from where I had surgery, it seems to rub against a tooth back there.

I thought what I should do is start my own topic on this because I think its going to be a long hard journey for me to get back to eating enough calories that I don't need my tube. And I really would appreciate whatever encouragement it moves you to give. I'm relying on my husband for that right now and it's not working--he's kind of burnt out as a caretaker unfortunately.

This week, finally, I got off oxycodone, kind of by accident. I thought I had one more little bottle of "oxydose" drops left but I didn't. My mouth pain had decreased to the point where I was taking (if anything) tylenol during the day and only using the oxy at night when the pain is worst because my mouth dries out--when I realized I was running out of oxy, I switched to tylenol at night too. I thought since I had already cut down on my use during the day, I wouldn't have withdrawal symptoms but after two days of thinking I was getting the flu because I has the chills all day long and a little nausea, it dawned on me that it was probably withdrawal. I've only had minor chills today so I think I'm past the worst of it and it has made me decide I really want to stay off that stuff if I can--though my tongue still has this irritated spot that hurts--and it also still hurts somehwat to swallow. I'm torn because it might be easier to eat if I took a stronger painkiller beforehand. But I hate that I was dependent on it and I had been taking it for several months.

So anyway, today, my oral nutrition has consisted of about 1/3 of a tall glass full of soy milk/banana smoothie. I can take about 5 gulps at a time and then whatever that part of my tongue is doing rubbing against the teeth starts to hurt and I have to stop. It also hurts in my throat every time I swallow but when its a smoothy with ice in it, the ice actually seems to soothe that. Eating at this rate is not going to get me off the tube but I'm actually proud of myself for just trying the smoothy. I've had so many really painful and aversive experiences trying to eat it's like I have to force myself at this point.

I'm planning on going back to it and at least getting another third down today. Its a start.....anyway, I'll check back here and just post updates on how I'm doing. I feel like I need to keep on myself about this if I ever want a chance at being able to eat again.

Nelie

Nelie
You are doing a so well, and being very brave, as well as taking the time to post often to help other members.
I know it seems as if it is taking forever Nelie but,I think you are pretty well on the road recovery.
I am sorry you feel as if your husband is distant, it can be hard on caregivers . Maybe he is trying to convince himself that you are now cured and things should be back to normal.

Pete had his tube for a year and I can remember on occasion thinking , why is he hanging on to that thing.
Looking back on some pics we had taken about 8 months from diagnoses , when I thought he was well on the road to recovery. I can see now how skinny and unwell he looked. But in MY mind by then, he was doing great!
Wishful thinking my part I guess.
We see what we want to and deal the best we can. Hang in with him Nelie, maybe he just needs, not think about losing you, for a while.

Wishing you both all the best

Nelie, hope this isn't a dumb question, but have you seen your dentist? He might be able to spot a jagged edge on the tooth that is causing your tounge to be sore on that side and smooth it down it might be worth a visit. Amy

Nelie, I think its great you got the 1/3 of a glass down OK. Since you weren't able to swallow anything before this, I think that's an encouraging sign. Small steps will add up to eating again eventually. Hang in there. Connie

Amy, not a dumb question at all. I did see my dentist about a month ago and he did smooth down a couple of tooth surfaces that were dcausing problems. It is since then that I have had significant reduction in mouth pain and the sense that I am healing more so I think that helped quite a bit. I think there still may be a spot or two that eneds work , though, so I may call him this week and ask if he can squeeze me in again.

I am also having some problems with trismus--it isn't really severe but its definitely there- when I strecth my jaw a few times during the day I can get two fingers in the gap between the teeth --but it should be three fingers!

So I think it was hard for the dentist to see in the back of my mouth--I was at this kind of head pointing toward the floor angle in the chair and teh air blast from his thingie he ws using to smooth the edges suddenly started *really* hurting the sore spot on the abck of my mouth so I had to ask him to stop last time. I was really having a lot more pain then though.

So here's my progress report. Saturday I had about 12-15 spoonfuls of cream of sqaush soup. I can do about 5 or 6 swallows before it starts hurting so I did two or three rounds of that. The squash soup had some ginger in it which made it sting a bit more than othersie I think, although it wasn't a lot (that I could taste anyway). Today I had about 10 spoonfuls of onion soup (without the yummy cheese and bread of course). The good news in all of this is I could taste not JUST salt in these soups but other taste as well so my taste sensations do not appear to be totally zapped.

Now if only I could EAT more. I was visiting my fmaily this weekend and my parents really do know how to eat well--my husband got treated to calamari and yummy fresh salads and crab-filled ravioli and sanwiches with rich grainy bread and thick slices of good cheese and I SO wanted all that! Maybe one day. It really seems awfully far away right now.

Nelie-
Thank you for starting this topic. This will also help with my Mom. I can share your experiences with her to help with her expectations on this issue.

I hope that by having a "written" log of your efforts it may help you with the recovery. Just by being so conscious of your attempts it may keep you pushing along even harder than with out the postings. It almost makes you accountable is some sort of a way. I hope this helps aide you in recovering and resuming eating by mouth. Stay Strong!
Tami

thanks Tami! If you want to contribute with how your mom is doing it would be welcome. You're rigt I'm doing this because it helps make me accountable in more of an every day way than I was being!

Well, I haven't accounted for myself for a while here and that's because there were a couple of days when I got so busy with working that the extra effort to sit dewn and slowly try to eat/drink some kind of "real food" became too much. It was a much as I could do to get 6 cans of "jevity" down. I have always done cans for my tube feeding--and I have to do them one at a time, More than one makes me sick. I was doing 5 for the longest time ebcause I was so easily made sick for other reasons even though originaly (when I weighed 40 pounds more before I started radiation at the beginning of April) I was told I'd need 7 cans to amintain my weight. It seemed like 5 cans results in a weight loss of 1-2 pds per week. Which, since I was overweight, didn't seem too horrible and wasn't too hard a goal to reach--didn't add too much to the nausea.

But when I realized I had lost 40 pounds a couple of weeksa ago, I decided I have had enough weight loss. I'm clearly very weak--I've lost muscle tone not just fat--and I need to maintian the weight I'm at now--maybe eventually gain back a few pounds (actually, since I was diagnosed I have lost 60 pounds because I lost 20 pounds from the two surgeries adn teh resulting surgical infection I got from the lumpectomy before April, and radiation, ever started. Who would have ever thought that I'd be grateful for having been 50 pounds overweight in the beginning of January?)

So there were a few days of just struggling to find the 6 breaks during the day to get down 6 cans of Jevity. Plus I have salagen and tamoxifen I take by grinding up the pills and putting them through the tube, and I'm taking "beecaps" supplements right now, that need some extensive grinding before they go through my tube. As well, I have a Bvitamin/vitamin C drink mix and I'm taking two glasses of that a day right now (which are megadoeses of B and C but there's reasons why both may be good.) Then there's the extra strenght Tylenol I take for pain. So just taking breaks and figuring out what stuff in additon to jevity goes down the tube, and carefully grinding it up and putting it through is actually hugely time consuming. I can't believe how much time out of my day it takes. To find the time to, on top of that, set up some kind of oral consumption experience (I won't say eating yet because it isn't), which I am trying to set up so it will be a good experiecne, not something that discourages me more but somehting that tempts mne to keep trying, some days it seemed like too much.

BUT yesterday and today I have been back to that. Yesterday I just had some vegetable broth--no calories but with the 6 cans of Jevity I dohn't think I need calories so much--the veg. broth tastes like "real food" to me--it doesn't just taste like salt (this is actually a soemhwat low sodium broth), and when it's slightly warm it really feels good going down. I can't swallow big mouthfuls at once though but I ended up having a cup of it.

Today I tried sopme French Onion soup, with tiny almost ground up bits of onion and then a littel can of diced peaches. Someone else had mentioned those and I thought they were something nonliquid I might be able to handle because theya re soft enough.

Well, the cup of onion soup (which was really just a little thicker than the broth the day before) went down OK and the peaches started OK--they are liquid enough I didn't have the problem of them just sticking to my teeth or the roof of my mouth but (and this upsets me) I couldn't seem to swallow them right! I would think I had done it and then cough and the littel bit of peach would come flying back up. Is this just because I'm out of practice getting food to go down the right pipe or something?

I'm actually a litte hesitant to even try more because my husband wasn't around and I started worrying maybe I could choke on a little gob of peach. Did others of you have this problem when you got back to eating? I know right after my partial glossectomy it took me a while to figure out how to use what was left of my tongue to get bits of food to go to the right spot to swallow. I had a hard tiem there for a week or so thenit seemed to suddenly get much easier--like my brain had learned the new movements nd it became automatic. Do I just have to keep trying adn I'll relearn this again or does this mean I could have problems for a long time now? I hope not.

Anyway, that's my update. And I plan to keep trying.

Hi Nelie --

try using your blender -- when Barry's throat is bad (it comes and goes now) I use our blender to "puree" my cream of crab soup and potato soups as both have hard bits or lumps that scratch his throat and make it hard for him to swallow.

I found stringy things (like squash) don't work as well -- potato is good however. I made a great cream of spinach soup -- chicken broth, onions and canned spinach plus light cream -- and pureed the whole thing. It looked great, like for a dinner party (if you like green soup) and tasted great too. Next I am going to try borsch!

Also, Trader Joe's sells great completely pureed soups in boxes -- just pour out what you need -- there's a squash (not stringy), corn, tomato (might be too acid if throat's raw) and also, a portobello mushroom. Not a lot of calories but they go down smooth...

Best,
Gail

We don't have Trader Joe's here but our local Wegman's carries some boxed soups like that. Actually, their boxed portobello mushroom soup was the last thing I was able to get down during treatment--I was still eating it and finding it tasted good on week 4 of treatment. I'm going to go there today and get some. I actually have a great recipe for cream of onion and garlic soup and maybe I wilol make some of that. It makes the whole house msell good as the onions and garlic roast and then at the end it is all pureed together.

A friend of mine who's husband has advanced MS and some swallowing issues told me that there are actually different muscles in your throat involved in swallowing liquids and in swallowing solids. I kept swallowing enough through treatment that its obvious my swallowing is working OK for liquids, but I guess I'm just worried I've somehow lost the muscle control for solids. Has anyone else had this same problem? Should I be asking now to be referred to a swallowing specialist? My next appt. with the ENT actually isn't for a month and I don't want to bug him if this is probably an ability I'll recover on my own just through continuing to try, but I also do want to be proactive about this.

Nelie

Nelie,
In my humble opinion,it seems like a good idea to step up the appointment, can't hurt to ask. At the very least, he will tell you whether it is something to worry about, and at the most, he will refer you for a swallowing eval. That ain't a bad thing.

Andrea

Nelie, will you please share [or e-mail] me your cream of onion and garlic soup? I think John would like it-we are still looking for diferent things he can eat. I'm gonna try Gail's spinich soup this week. Keep at it Nelie, you are having a tough time, but believe it will get better. Amy

Amy, Soup recipe:

1. Chop 6 large onions into @ 1/2 inch slices and peel the cloves from 2 heads of garlic. Bake these together in a roasting pan at 350 for 1 and 1/2 hrs with 3 cups chicken stock. Season with salt, pepper, thyme and whatever else you think sounds good. Cover roasting pan w/foil.

2. Pure contents of pan in blender adding 2 more cups of stock and 2 cups of heavy cream. Pour soup into saucepan and heat--but not to boil.

That's it! I got it from "The New Basics" cookbook. Its one of their less complicated recipes.

Thanks for the encouragement. Today I finished the onion soup.Tommorrow I'm going to make this.

Thanks Nelie. It sounds yummy AND I know it will keep the vampires at bay Amy

well, I made the cream of onion and garlic soup and making ti was fun--it's really thr first cooking I've done since I stopped eating and just interacting with real food is nice.

BUT I had problems eating it! Even though the onion and garlic are pureed there are small bits in the soup and they stick everywhere--especially the roof of my mouth and make swallowing hard--and the only way to clean my mouth after seems to be to stick my finger up there and swab it around--the roof of my mouth is so completely dry otherwise and using my tingue doesn't work--I can't feel where it's going enough.

I think I probably need to get a swallowing evaluation. Sigh. Yesterday was the dry run for my breast rad and today is the official first day, I was hoping this eating stuff would be improving by now and help cheer me up as I face another 6.5 weeks of rad to another body part (but this one will be SOOO much easier--a walk in the park comapred to the other I think).....

Nelie

Nelie:
Thanks so much for all your helpful posts...Your bravery is inspiring!
To you and all folks getting off the tube - my Dad had his barium swallow this week, and has the go ahead to resume whole food - they also indicated he can come off the tube - He had a bit of bacon, eggs, toast, and coffee for breakfast yesterday, and continues with the cans of liquid nutrition he was taking via tube as well
My questions are these: He's concerned about numbness and tingling in his tongue and near the site of his surgery (L tonsil area) -- is that something that will go away? He doesn't appear to have problems swallowing - are there foods he should really avoid completely?

Thanks for all your help and support - my best to you all...

Hi Alex,
As most folks here will tell you, the foods he may want to avoid include those with a lot of acid or pepper "bite" to them, as it will make his tongue sting. He will want to experiment with old favorites like tomato sauces and lemon/pepper sauces to see if he will tolerate them or if they are too much for his tongue to take. I personally would avoid any foods which, in the past, have given him indigestion or a lot of gas. In other words, it's a very personalized thing, but he will let you know what he wants and likes.
Glad he has progressed to a point where this has become an issue!

Live well,
Andrea

Nelie-
Good Luck with the RAD. I woul expect that you are a trooper now with all of treatments for the Oral Cancer. Hopefully you will breeze throught it.

On the eating note-when my Mom first was diagnosed I bought her an online cook book for oral cancer/surgery patients. It had a lot of recipes that were supposed to be appropriate and tasty. If you are interested in it, maybe she (my Mom) can email you the file. Let me know or email her directly. User name Tami's Mom.
Let us know how you are doing with the Radiation
Tami

Nelie,
the things you write about eating in your post make me feel like I am reading about me. Only I do not like onion soup but your description of how food sticks to your teeth and all over your mouth sound so familiar. I had this happen during treatment when I tried to eat some good home cooked food. And after treatment ended and I would try to eat.

I have been eating soup for lunch along with a bottle of ensure and sometimes will eat a can of carrots plus some equate for dinner. After each time I have brushed my teeth, gums and tongue with the biotene toothpaste. It has gotten a lot better.

I still am also swishing with the salt and soda and still use the magic mouthwash now about every other day. The swallowing specialist told me to drink apple juice that it would not burn. When I first tried this it did. About a week ago I tried it and it just made my mouth want to kind of turn inside out and make my mouth feel funny. Today I actually could taste the apples and it didn't make my mouth feel funny!!

Now for my news and I hope that it gives you more hope. I saw my ENT yesterday and I had asked about him taking my PEG tube out and he said he could. I was scared but felt that if I lived through getting drains out from the neck dissection that the tube removal wouldn't be so bad. When he looked at it he said well good you have one that has a balloon at the end this will be easy.

He got out a syringe and tried to pull air out? He said it wasn't doing what it was suppost to he only got a little. He went to check to see what resistance he would get and it came right out!!! I didn't feel it at all. I feel so much better.

I just keep pushing myself talling myslf if others could do it then I could. I was ready to get it out. It was starting to hurt anyway.

Just keep on trying with easy foods. I also found out that my tongue is very sensitive so I am being careful about what I put in my mouth. Any thing with the tinyest spices makes my tongue feel like I just ate a jalapena pepper!!

I did finally eat some ice cream the other day. Not as much as I use to but was able to get one scoop down. Just need to conditon ourselves to eating again.

I hope that things with your eating improve and that your treatments go well. I continue to keep you in my thoughts and prayers.

Take Care
Love
Terry

1st Alex- my husband has a couple of problems with swallowing. 1- his tongue is sewn to the floor of his mouth and thus he has very little control over it. 2- All but 4 upper front teeth were removed during his surgery so he can't chew. We try to avoid any food that can't be swallowed in small bites and go down smoothly. Your Dad will need to be very careful not to eat something that could choke him. Offer lots of pastas,cooked very soft veggies, rice maybe[altho John has trouble with rice getting lost in his mouth]lots of gravy and sauces.

Nelie, I fixed the onion, garlic soup yesterday. Everyone[John, my 36 yr old son,and my 14 yr old grandson] liked it. Thank you. Tonite I cooked a risotto [with Aborio rice and peas] and chicken wings and mushrooms, browned in olive oil,then simmered in chicken stock and Campbells Cream Chicken gravy for about 45 min. The meat was so tender that John ate about 6 wings. The food he can eat WITH NO TROUBLE

1st Alex- my husband has a couple of problems with swallowing. 1- his tongue is sewn to the floor of his mouth and thus he has very little control over it. 2- All but 4 upper front teeth were removed during his surgery so he can't chew. We try to avoid any food that can't be swallowed in small bites and go down smoothly. Your Dad will need to be very careful not to eat something that could choke him. Offer lots of pastas,cooked very soft veggies, rice maybe[altho John has trouble with rice getting lost in his mouth]lots of gravy and sauces.

Nelie, I fixed the onion, garlic soup yesterday. Everyone[John, my 36 yr old son,and my 14 yr old grandson] liked it. Thank you. Tonite I cooked a risotto [with Aborio rice and peas] and chicken wings and mushrooms, browned in olive oil,then simmered in chicken stock and Campbells Cream Chicken gravy for about 45 min. The meat was so tender that John ate about 6 wings. The food he can eat WITH NO TROUBLE

oops- hit the wrong button- the food he can eat with no trouble is ANGEL HAIR Pasta, plain with butter or any kind of sauce I make. He wants to put the left over onion-garlic soup over it tomorrow Hang in there. Amy

This is very interesting dialogue.

I am 2 weeks out from radiation, and can't eat or swallow any food or drink.

Not really from pain, but from the wierd textures and tastes.

I know that sounds whimpy, and I guess if I didn't have the PEG to fall back on, I might force myself more.

Today, I tried some pretty bland scrambled eggs and could only take one small tasteless bite. These used to be one of my favorite breakfasts.

In fact, everything I loved is all I dream about.

I tried some icecream shake yesterday, and again, only one tiny sip and couldn't do anymore.

I can't explain it.

Normally, (3 months ago) I could eat almost an entire pizza by myself. Today, although I crave pizza, and everything I love (in-fact I dream about food all night long!!!), but I can't even eat more than one bite.

It's like a cruel joke.

Now, some questions for you Nellie.

Are you still (or were you ever) using the salt/soda rinse...?

Is the food related pain temperature sensative? I know the cold seems to help...Does warm? (Like tea, etc.?)

I had pretty good pain too like you describe after my surgery, and the only thing that helped was those do it yourself teeth guards at the drugstore.

I followed the instructions to mold it to my mouth, wore it a few hours and got instant relief. It might be worth a shot, since you may have a sharp tooth or other irritation rubbing the sore spot and keeping it from ever healing.

I went through the Oxycondone withdrawl too about 2 weeks ago...Same symptoms you had.

Good luck and please keep us all posted on your progress!!

Michael,
Please be careful about what you eat. I also craved real food and still want to eat it so badly. I craved it so much that I didn't care how much it hurt for me to eat it then to have it scrape my throat and make it so sore that I didn't want to eat and would have to rely on the PEG.

That is why I am taking it a lot slower now because I wanted so badly to get the PEG removed. Not that having the peg was a bad thing it was a life saver but I had it for 7 months and I felt that I really needed to take a step. If things were not improving I would not have taken it out but I do see a difference when I look back.

Food still gets stuck in my throat while eating but not as much. Now it is only small pieces that once in a while that get stuck and come back up later when I cough.

just take your time, be patient, and keep posting. We all like to keep up with how everyone is doing and it sounds like you are getting better.

Take care and both you and Seth are in my prayers.
Love
Terry

Michael --

Barry uses salt and soda rinses a number of times a day -- his dental onc. actually said "if you can do it 1000 times a day, do it <gr>" -- finds it really helps clear his mouth and refresh. Onc says helps clear up mucositis as well. Barry also uses GelClair as a rinse to coat sore areas; the same company (GUM) makes an over-the-counter version called Rincinol which isn't as strong but contains same soothing ingredients.

Barry of course has no choice on eating since his PEG fell out and Hopkins opted not to replace as he was almost through treatment, in a way this has been good -- to him "food is medicine" and he eats it whether it tastes like much or not. In another way, it was too bad as no one anticipated the two infections he came down with (which got him into hospital) and there he found the food hard to take, too spicy, not smooth enough, etc. and he lost weight in both stays, going from only 2 pounds below weight at dx to 10 pounds down. The ability to supplement would have helped then.

Nelie is right, watch what you eat -- avoid things with gritty texture, large solid lumps, etc. but try to eat even if it tastes like *nothing* as your throat needs the exercise, Whether you will be able to do this without pain relief, I am not sure -- Barry has to use it to eat and his ENT had to as well when she was being radiated (with no PEG). His ENT told him to eat bland smooth things and to use lots of water (Barry prefers 1:1 diluted mango juice) to wash down to avoid getting stuck in throat.

Barry cannot eat anything that is too cold or too warm, just room temperature. Hot especially is a no-no. Too cold makes him cough as it goes down. But everyone is different, I know many say very cold helps.

You may wish to think about supplementation with zinc, which is supposed to help taste return more quickly. I am not sure in what manner -- can you take tablets? Barry is going to start using this, although he can taste some things and in fact, never lost his taste completely (thanks to tomo, front of tongue got little radiation). You may be the same, try sips or nibbles of various things to "test"-- Barry can taste mango, strawberry, coffee (faint), vanilla, salt (this taste is supposed to return early-on), sugar (he never lost ability to taste sweet), and some chocolate. But most stuff just tastes bland and vaguely salty, but it is definitely improving but slowly.

Keep on plugging away -- this is not a quick process --

Best wishes to you and Seth,
Gail and Barry

Micheal,

Two weeks out from rad I was in the same place you are. It just takes time--things will get better. And I know what you mean about craving all sorts of things. I was at this college event a couple of days ago, that I had been involved in planning from the inception, and it was held at a local place known widely for the delicious meals they serve at events --especially their scrumptious desserts. At lunchtime, I had to go into this little room where I could shut the door, and feed myself a can of jevity. Then I came out and sat with some friends while they ate everything in sight. It was frustrating. What I do sometimes at home with my husband is take great big "smell bites" of whatever he's having (and yes, this does involve sticking my nose practically in his plate). Until you are able to eat again, you'd be surprised how satisfying aroma alone can be as a substitute. Try it. What we sense as flavor in the mouth is largely composed of aromas anyway. I think this is a lesson I'll take with me even after I'm able to eat again and maybe it will help me control my weight when that becomes an issue again (which I actually hope it will--never thought I'd say that).

But I will echo what Terry says about being a little careful. I tried some stuff early one (about 3 weeks out) that tasted so bad and hurt my mouth so much that it amde me not want to try anything else (except iced green tea) for about a month. In fact, I think that not being careful with some of my earlier experiecnes made it harder for me to try later--almost liike a learned aversion to trying to put stuff in my mouth--eventhough I had all sorts of cravings for food still.

As for the salt/soda rinse question, I used it constantly (probably every 10-15 minutes) during adn right after treatment and I still use it a few times a day. It's the only thing that has enver bothered my mouth.

Today I'm going to try some angelhair pasta, thanks for the suggestion, Amy.

I also got new medication for thrush yesterday from my ENT--because I thought I saw a patch in my mouth and I want to catch it before it gets bad. They are little tablets that are supposed to dissolve in your mouth--I try to rinse or brush my teeth right before so my mouth is moist. I have to take them 5 times a day and they taste *terrible* and take about 15 minutes (in my dry mouth) to actually dissolve. But this is day 2 of taking them and I notice the painful spot in my throat is much reduced--which says to me it was probably due to thrush all along that never got fully treated. So hopefully this will help in the long term.

Nelie,
Instead of dissolving the tablet in your poor dry mouth, what if you dissolved the tablet in a very small amount (maybe a teaspoon or two) of warm water or saline first, then held it in your mouth and swished it around. Would that work?

Andrea

Andrea, I don't know if it would work as well--its definitely an idea to try, though, if my mouth feels just too dry to do another one (5 a day is a LOT--at 15 minutes apiece that is over an hor of sucking on these things every day.....)

thanks for the good wishes Terry.

I DID eat a teeny bit today, so maybe I'm SLOWLY making a little progress.

Nellie, keep us posted on your journey too

Nelie,
I am having similar problems swallowing solids. Anything remotely solid (including diced peaches) seems to get stuck in my throat and then I cough it up. In addition this seems to treigger an allergic-type reaction which brings the roof of my mouth out in bumps. Interesting that somebody has mentioned that there are diffreent muscles for swallowing solids to liquids as I was putting this down to narrowing of oesophagus due to treatment. Have ben advised to gradually thicken consistency of food until able to handle solids.

---------
Chris, 49 Male, Tonsil Cancer with metastase to neck lymph node. Tonsillectomy+neck dissection, Cisplatin/radiotherapy completed May 2005

Hi Chris, It looks like we had our treatment at about the same time too. Have you been to see a swallowing specialist or are you just going to try following that advice about gradually thickening the consistency first? I am trying to do that and have decided to give it another week before I call my ENT and ask for a referral to the person at the hospital who could probably do a barium swallow test and help me more. From what I undertsand, probably the first thing he would say is exactly the advice you got, so I want to be able to say I've tried that already and need more help.

Thanks for letting me know I'm not alone and sorry to learn you're dealing with this too.

Nelie

Congrats on being Pel-less Terry!!! That is awesome. I bet you are sooooo releived.
Tami

oops that was supposed to say "Congrats on being peg-less!"

Yes, I forgot to add that to my last post. It's wonderful you are off the PEG, Terry. Gives me hope.

Here's my own progress report. Tonight I heated up another bowl of that onion/garlic soup and, instead of saying to myself that I wasn't sure I could do it, I said to myself that I WILL get through this bowl, even if I have to cough and spit and gag every now and then. My husband was sitting right in the other room so if I really choked badly I figured he would come (and he did at one point when it seemed I'd inhaled a bunch of mushy onion bits).

I did a lot of coughing and spitting out the little bits of stuff I couldn't get down into kleenex--I'm defintiely not ready to eat in public--but I made it through the bowl and swallowing did seem to get a little easier as I went on. I have a little container of applesauce I plan on having for dessert and then I need a major flossing and toothbrushing and mouthwash seesion to get the last of the onion and garlic out of my mouth but I am feeling very pleased with this. Mainly because, although I'm clearly still having some issues with swallowing right, I'm NOT having any bad pain and I can taste this soup OK.

Yay!! There's hope. Maybe I'll make progress wihtout having to get a lot fo special rehab if I just keep at it.

Nelie

Tommorrow I'm going to try scrambled eggs with a lot of olive oil and cheese to help them go down.......

Hooray! Today onion soup, tomorrow the WORLD!!
I'm glad things are progressing so well.

Andrea

John's mouth and throat have been causing lots of problems this past week, but the other day, I mixed a can of Campbell's cream chicken gravy with some Swanson's Chicken broth, threw some chopped fine mushrooms in and simmered it while cooking a batch of Angel Hair pasta. Poured the sauce over the pasta and he has eaten it for 3 days now. I'm gonna try Gail's pureed spinich soup this week.

Nelie,

Have had the swallow test (video fluoroscopy). Have been given some exercises to strengthen closure of nasal passage as it showed this was not working properly. As a result of earlier post on Shaker Exercise I have done ome researh on this on Google and am going to try this as well to strengthn swallow muscles:

Shaker Swallowing Rehabilitation Exercise

1. Extended Shaker

Nelie,
I am so glad that you are making progress!!! Remember I am about 3 weeks ahead of you as far as finishing the Chemo/radiation. There is HOPE!!!

Now onto another issue... opening our mouths wide. I didn't realize I had a problem until you posted about only opening wide enough to get two fingers in and you are suppose to get three. I could just barely get two in!!! I mentioned this to my ENT and he was so funny. Once I showed him how far I could open my mouth he could stop opening his wide. He did this about 6 times and told me of an exercise to try to fix it.

Take some tongue depressors (amt stacked to the size of mouth opening) and wrap them together with rubber bands. Put in mouth twice a day. Each day add a depressor. Do this until mouth opens as wide as I want.

I going to start this tomarrow as I left the depressors at work.

Hang in there we are getting better!!!
Take Care
Love
Terry

PS Thanks for the congratulations!!

Terry, Let us know how that works. And thanks for the encouragement (I had to give up on the applesauce last night as it felt like it stung my mouht a little and I couldn't swallow it easily--I think I was just tired. I plan on trying agaon later). Chris, thanks a lot for posting what you found about the shaker exercises since I didn't have time to search on it. I am going to add those to all the other things I'm doing to try to get better!

I am having a hard time being good about dossilving 5 of those thrush tablets a day in my mouht. Yeserday I dod 4 and was feeling so nausdeated by the 4th I couldn't bring myself to do another. I'm netioning this ebcause, again, if I say it here it seems to help keep me on top of things.

Nelie

Nelie, I'm glad to hear you're making progress. I'm rooting for you to keep making constant improvements. I'm sure you'll be back in the classroom where you want to be one day!

Chris, thanks for that Shaker Swallowing Rehab exercise. I'm going to give the info to my husband in case he is interested in trying it.

Connie

Just a brief update--I had a regular follow-up appt. with my medical oncologist Monday and I mentioned my problems swallowing and they promptly set me up with the speech pathologist at the hostpial who will give me a swallowing test. At first they said his first available opening wasn't until Novemeber but then they called back and got me in earlier--tommorrow I go for that test.

Meanwhile, I saw a different RO than my usual one, because the usual one is away at a conference, yesterday as part of ther regular weekly visits with an RO that take place during rad. because I'm having rad for my breast (which is still a total piece of cake).

It was pretty funny because the nurse at radiation medicine did a very thorough job first in terms of finding out how I was feeling and where I was in terms of recovering from the rad and chemo for the oral cancer. Then this poor (young) RO from Roswell Park walks in knowing I'm having breast radiation but apparently having NOT looked at the rest of my records, and looks at all the nurse's notes and says "um, you're having trouble *swallowing*?"

So I filled him in on the previous oral radiation and then he said that my throat could have narrowed because of the radiation, as well as having scar tissue that keeps things from going down smoothly, but that it should improve and get better over time. He seemed to think this would just happen even without swallowing therapy, just by itself and said that it takes at least a year for the radaited area to really recover as much as it will and some people say a year and 1/2. I wish my normal RO had told me that! It seems like I'm hearing all these long estimates from doctors AFTER the radiation.

Anyway, I hope that by June (which will be a year) I am back to eating pretty much normally, but it did give me some perspective.

Oh--and I've done a couple more bowls of soup since my last eating update but eggs doidn't work too well.

Well I just had my swallowing test. It's kind of neat watching a video of yourself swallowing as you do it. And it turns out that when I feel stuff is getting caught in my throat and almost going down my airway-that's because it IS. It seems I can drink liquids OK (but not fast--and I've always felt frustrated with how slowly I seem to have to sip water or whatever) because every time I swallow I double-swallow to clear the spot where the liquids collect behind my epiglottis--which apparently looked "stubby" to the doctor and he thought could be damaged by the radiation but definitely isn't moving the way it should be to protect my airway and to help me swallow. I wasn't aware I was double-swallowing but the speech pathologist said it was a good sign I had learned to do that with liquids without thinking.

It's good news because it means I am feeling when stuff gets stuck there so I'm not so likely to actually inhale things into my lungs. Anyway, he gave me some exercises to do to strengthen the muscles that control the movement of my thorat around the epiglottis and I see him in a week so he can see how it's going.

So the bad news is it isn't really just as simple as start with liquids and then move on to solids because I really have to rehabilitate the muscles on my throat before swallowing anything at all solid is going to work. But he seemed to think with the exercises eventually I'll be able to get back to eating solid food. I'm really glad I went for that.....

Nelie --

Very interesting -- Barry's scheduled for his swallowing test on Nov. 8 and we are pretty interested in finding out what it shows. He is gradually adding "more solid" foods to his diet (this 3 weeks' out from treatment) but nothing really solid yet. Tuna cassarole and similar is about it and he has to eat that slowly and with water to make sure it gets down.

Hopkins sends almost everyone to a speech/swallowing person for evaluation now because they think the sooner the exercises get started the sooner people can resume normal eating.

Gail

I wonder if all the vomiting I did (between the chemo, the amifostine and the phlegm that got caught in my throat) could have damaged the epiglottis. The doctor did say that it's possible I've always had a "stubby" epiglottis and it's just the muscle control that has changed.

Just an update on how my swallowing is going.

I am trying to swallow more liquids gradually, even if I can't do solids. I really can't wait for the day I can do pasta or mac and cheese and what I miss the most is salads, which I hope I can do, at least with shredded veggies and lots of dressing one of these days, even if I'm done crunching on whole carrots.

I made Gails' crab soup yesterday and my husband enjoyed it unblended while I pureed it and had a bowl. Later I had a bowl of cream of broccoli soup--its one of those organic ones that comes in a box. Very good--I added some extra half and half and some miso to it for some extra protein and to thicken it just a little. Today I'm going to have a smoothie for breakfast and the two soups later in the day and as well, I am also swallowing a big mug of white tea every day. This is way more swallowing than I've been doing previously, and I'm hoping that even though it's all liquids, it will help get my throat back in shape to swallow solids (of course, I'm also doing cans of jevity down the tube for the bulk of my calories since a smoothy and two bowls of soup, even rich soup, won't exactly cut it).

I've been less successful at keeping up the swallowing exercises as much as I should. I'm doing them once or twice a day and I think it's supposed to be more. And I'm not really even sure I'm doing them right. One is swallowing with your tongue between your teeth and when I try to do that with a little bit of water or tea in my mouth I end up choking on it. The other also makes me cough--swallowing and freezing midswallow when the muscle you can feel if you put your hand right under your chin contracts. I can do this if it's a dry swallow, but I'm not sure that's the same thing.

I guess maybe it will just take some time to make these exercises part of my life and I'm so worried they won't work and I'll never be able to swallow solids again. This has actually been one of the hardest things so far to deal with. Its not a possibility anyone really warned me about and I just can't imagine being stuck swallowing only liquids for the rest of my life.

Nelie

Nelie, good for you for working so hard at this. I wonder if some of the challenge may end up being mind over matter. John said to me tonite[after his 3rd bowl of ham and bean soup] "you know, even tho I fantasize about a porterhouse steak, I may not like the taste or the fat anymore." Lightly steamed veggies with your favorite dressing might make a great salad. Have you tried bean soup? [the 17 bean variety] you can puree it if need be. I know you feel its going slow, but you seem to be making progress to me. Amy

Nelie,

In comparison to my eating progress after treatment, I think you are on track. My treatment ended in 6/04 and I got PEG removed in 1/05. I remember last Thanksgiving that I cooked the regular meal, but I only ate a few bites of stuff like sweet potatoes and pumpkin pie. Just keep doing what you are and you will see improvements. Seems like I have noticed improvements every 3-5 weeks in the last few months. Also, I've found that there are days when something I ate last week or the week before doesn't work - don't let those days discourage you - move onto something else and try again later. You will find you have "fall back" foods - many times I have ditched the dinner I cooked and had high hopes of eating and moved on to an omelet - that's one of my new comfort foods - you'll know what yours is. I have read your posts about your swallowing. I still have difficulty swallowing - food seems like it lands on a "ledge" when I swallow and it takes several drinks to move it on and sometimes I get totally blocked. I also cough quite a bit when I swallow - Doc says it is mainly scar tissue from the rads - I was blasted from both sides and front and back. Doc also said to turn my head to the "bad" side and then swallow. This is supposed to force the food to the "good" side and make the swallow easier. It does work for me although not every time - probably 7 out of 10 times. How is your taste coming along? I have been pleasantly surprised to regain probably 90% of my taste - sugar remains a mystery to me, most of the time it burns my mouth but I can tolerate mild salsa's - that perplexes me.

Anyway, keep on what you are doing - you're headed in the right direction.

Pam

Thanks for the encourgement Pam and Amy. Pam, I guess I'm about a year behind you (treatment ended 6/3/05)so it's good to know there's a lot of recovery ahead of me! So far the soups taste pretty good, I think pretty much like they should, to me. The smoothy was another matter. I think I am still missing a lot of my sweet taste. I couldn't really taste the blend of fruit flavors like I used to--but I can taste some fruit flavors on their own so maybe its just a matter of time. Today I see the speech pathologist again and I'm going to check with him to be sure I'm doing those exercises right and see if there are any others.

Nelie

Nelie,

I would say that my sweet taste is my big hold-out. This far out of treatment and sweets still don't taste right which rules out all of those processed foods I don't need anyway. Most of the time sugar burns my mouth - the only exception I have found is some cakes and ice cream. I can't swallow the cake without the ice cream to push it down but this didn't happen till just a couple months ago - a good year post treatment. Sometimes the sweet taste is OK for a couple of bites and then goes south pretty quick. I try to stay upbeat about it because all I have to do is look back to last year and realize I have come a long way. I think you are doing a little better than I was at this point because I remember last year I had a family reunion to attend the last weekend of October. Well, the week before I was determined I would go and be able to eat something, so I pushed hard to get something down for a couple of days and woke up on Friday with the worst pain I ever experienced throughout the whole ordeal. I had over-extended the jaw muscles trying to eat and by that afternoon one side of my face was swollen so bad I couldn't even talk. Needless to say, I couldn't travel and missed the reunion. I started over slowly after that,so please be patient and don't overdo it like I did. I have a few questions for the teacher in you - would you mind if I e-mailed you? Good luck with the speech pathologist today.

Pam

Pam, Feel free to email me. Nelie

Update from a couple of weeks down the line. The second visit with the speech pathologist got me a reference to someone who does acupuncture for saliva which he believes would help (but, with an abundance of caution, he suggested I check with my ENT first) and he gave me some encouragement that I was doing the two swallowing exercises he gave me more or less right but I have still been very forgetful about actually DOING them a couple of times a day since then (I'm getting better).

I am still doing at least one bowl of soup or something else every day(today it's liquidy mashed potatoes with sour cream, turkey gravy and lots of extra butter--about as thick as I can do).

Meanwhile, my ENT, who I'll see for a regular follow-up this Tuesday, got the results of my barium swallow and apparently wanted to do a FEEST test on my swallowing to get a better look at what the problme might be. I remember someone else here said they had one of these. If you happen to be reading this, could you let me know what that involves? I haven't talked to the ENT directly, I was called by his assistant about this to see if I wanted to do it (I said sure--anything that could help).

What's mainly getting in my way lately (and in the way of everything else I want to do during the day) is I'm in week 5 of the breast radiation and fatigue has hit me in a really major way--hit at about week 3 and has just gotten worse. I wake up after 9-10 hours of sleep (although I can't sleep straight through because my dry mouth gets painful and wakes me every 2-3 hours) and I'm as tired as when I went to bed. I have to take a couple of 2 hour naps on top of that during the day in order to have any energy at all when I am up and even then there's just like this wall of tiredness I run into which makes me forget all sorts of important things like making myself swallow more......

MY RO warned me that this would probably be the case, especially since this is the second rad treatment I've had in 6 months. It's funny because he kind of gave me a lecture when I asked about fatigue as a symptom when we were discussing the oral rad about how no one knows if fatigue is a "real" symptom of radiation or is just a result of stress and a cumulative effect of other things such as chemo. But then this time around he told me I could probably count on feeling fatigued by the second rad treatment so I guess he does think it's a real symptom after all. Anyway, it sure feels real to me right now. Before it hit, this rad treatment was a total piece of cake and even with the fatigue its worlds better than the oral cancer rad with chemo and amifostine on top!

But I'll still be glad when it's over and I get SOME energy back.......

Nelie

Nelie, I watched my husband sleep most of the day and night for weeks during and after his radiation tx. He has finally gotten a good bit of his strength back. One of the things he is having alot of success eating is angel hair pasta with either a cream sauce thinned or tomato sauce thinned. The angel hair just slides right down. Keep going lady! Amy

Nelie, P.S.- John also eats Maruchan Ramen noodles-chicken flavor- several times a week for lunch. At first, after we cooked them, he cut them up into small pieces [in the bowl] with scissors. Now he doesn't have to do that anymore.

Nelie,
One of the stupid things I did when I had radiation 8 years ago was to go to bed and sleep for most of the day, mostly because I couldn't keep warm any other way. Muscles atrophy very rapidly if not used. Talk to yout drs as to what exercise might help, but you need some. I suggest short walks in between the naps if that is what you need. You might also try some PT.

Take care,
Eileen

well today I'm running up and down the basement stairs to do the laundry. Does that count?

Also since we have had warm weather here lately I have gotten out most days and planted some bulbs (seems in a fit of "I'll be better by fall" I ordered over 100 daffodil bulbs last Spring in the middle of oral radiation/chemo). Those are all planted now and none too soon-there's upposed to be snow on Wednesday. I also take the dog for a walk (but sometimes a very short walk) at least once a day. I probably should be exercising more than this but honestly this alone is hard enough to want to do when I'm feeling bone-tired. I know you're right, though.

I'm also having major problems keeping warm. It seems like I get chilled really easily. I've been wondering if that could be the beginning sign of thyroid problems.

Nelie

Nelie, what you just described sure counts a exercise in my book Amy

Hi Nelie --

Have you had a thyroid test? You could feel cold just because you've lost weight and are not as active as usual, or you could have underactive thyrpoid. We were warned that this effect of radiation could "creep up" on someone, so they order a TSH (thyroid stimulating hormone) test for Barry when he has a blood draw, (which will be every three months for a study Barry's in.) Since he already has low thyroid function (not bad, but was taking lowest dose of Levoxyl) Hopkins is keeping an close eye on this. (And btw, he also feels cold more than usual, which seems to be due to body fat loss as his thyroid levels appears OK for now)

Everyone seems to concentrate on the really nasty early-appearing side-effects of radiation (for good reason!) but there is quite a bit on the OCF web site and in this forum about late-appearing issues, like thyroid impacts.

Gail

Nelie,

You are on your second round of cancer treatment and you are supposed to be tired! People have totally fallen apart doing a lot less. I have always questioned people getting overly tired the first time around, but we are all different I guess. Having gone through radiation 3 times, I can tell you that you will need all the rest you can get. It drains you, and you need to accept it. A nice walk would help, but don't kill yourself over it. It is not entirely physical and once you are done your emotional state will really improve.

Glenn

Gail,

I haven't had a thyroid test yet but I'm going to ask my ENT about having one when I see him Thursday. If he orders it, I'll have to go to the hospital for an extra blood draw or maybe they can do it when I go see the med oncologist in three weeks for my normal follow-up there. They are already taking blood at every follow up to check my WBC and whether I'm anemic still (at last check, I still was a little which is another thing probably contributing to the tiredness).

Glenn, thanks for reminding me that the fatigue is normal, especially the second time around. I actually didn't have severe fatigue the first time around during rad and chemo for the oral cancer--at lest not until a week or two into recovery where I did have a couple of weeks where I was just tired all the time. In fact, if anything during the end of my treatment last time I had insomnia. Probably because I had to wake up every 1/2 hour to hour anyway to spit out phlegm and was afraid I'd choke if I was in too deep a sleep. Anyway, at least I don't have to worry about that this time around!

Nelie

Hi Nelie,
Sounds like you are getting plenty of exercise. I didn't mean to suggest you go run 5 miles or spend an hour in the gym. You can expect to be fatigued after all your are going through. No one could ever give me an explanation as to why I was so cold. My thyroid was tested every two weeks and there was no problem. I was not anemic and I only lost 4 lbs the entire time with no peg.

Definitely get them to check your TSH when they do the next blood draw or sooner if that is weeks away. Just think how pretty those bulbs will look next spring and keep your spirits up.

Take care,
Eileen

Had a follow-up with my ENT who scolded me for not calling him earlier to let him know I was having problems swallowing (he also asked why I hadn't said anything in late August which was the last followup but I didn't KNOW then. I was sipping iced tea and eveything else seemed to still hurt too much to want to try eating so I thought I was OK--obviously I should have pushed myself to swallow earlier just to see if everything was working--even if it hurt).

OK, it's a good lesson for me to be more assertive when I think there's a problem. I did take too long to let someone know when I was having problems because I kept hoping they'd go away. Just exactly why I let the lesion on my tongue go for so long. Obviously I am not good at hounding doctors the second I think there might be a problem and I need to get better at it!

Brief update and whine session:

My FEEST test is scheduled for Friday at my ENT's office. The speech pathologist from the hospital is coming there to observe it and help offer solutions to whatever is found I guess, but she's a different one than the one I saw last the hospital and I'm hoping maybe she has some other exercises. I'm glad it's being done at the ENT's office--I'd just as soon not have to go to the hospital for a few weeks--I've been there way too much this year!

What I'm really scared of is they will tell me at the end that my epiglottis is too worn away and I simply can't swallow solids. Ever.

Yesterday I did some liquidy mashed potatoes with turkey gravy (took an hour to eat a small bowl of this) and some cream of broccoli soup with a little cheese melted in (took another hour). Total calories: maybe 300. And that is about 2 hours of really *concentrating* while I swallow tiny sips. I can't sip and read email or talk or do much of anything other than watch mindless TV or I start choking too often. I want to get off the tube but how will I ever find the time to get the nutrition I'd need every day orally, in liquid form, at this rate of consumption? I'd have to spend half my day sipping and occassionally coughing it back out when it goes down the wrong way!

Anyway, because I could do the liquidy instant potatos and gravy--which are fairly thick--and I seemed to have less episodes of things feeling like they were going down the wrong way, I had a moment of optimism today and decided to try some eggs scrambled very soft. I had a moment of triumph because it felt like the first bite went right down. And it did. Right down to that little platform my epiglottis makes when it doesn't move down correctly, apparently, and then just sat there. So after another bite or two I ended up coughing up several bites at once, then trying to reswallow, coughing when they went down the wrong way OR they got caught again and finally giving up and giving the eggs to the dog.

I am not ready to beleive this is the best I can recover back to. I just feel SO frustrated. No one even warned me this was a possibility--a permanent swalowing problem that is--I expected it would be bad during and right after rad but that I'd recover. As it seems most people do. I want to believe that the swallowing practice is making me better but it only seems to be making swallowing liquids better. Maybe.

I need encouragement. I'm in my tenth month of fighting one kind of canfer or another and I want to gte on with this last fight (though it's really against a side effect of treatment) and it seems to not be working very well.

Nelie

Nelie, after reading your dialog with Brian, I realize even more what a strong woman you are. You will find a way to deal with whatever the sallowing problems are-I really believe that. You have so much to contribute. Keep demanding the best answers from your Docs to get you where you want to be. Amy

Nelie,

I know how frustrated you feel but the swallowing problems you describe sound exactly what I went through this past year. I am one year ahead of you in this deal and it does get better with time. It's just very slow. Believe me, you are on the right track - you just have to keep on and don't give up. There have been so many meals I have fixed only to end up throwing it out and having a carnation instant breakfast. I still have swallowing issues and it takes me longer to eat - but I have gotten a little quicker - about 45 minutes to eat tonite. I have experimented with so many foods this past year trying to find what works. I remember Thanksgiving last year I barely got 2 bites of food down and this year I had seconds - not much turkey but could eat most of the trimmings. Comparing your progress so far with mine this time last year, I would say we were at about the same spot. Please do not give up - keep trying new things every day -something will work. By the way, I had my PEG removed in Jan 2005. I lost weight until June '05 and since then have gained about 8 pounds - I go back for a 3-month check-up in 3 weeks and hopefully I have gained a couple more pounds. I still have a bowl of ice-cream just about every night for the extra calorie boost because most of what I can eat does not have a lot of calories - I eat a lot of fish, soft-cooked veggies, pasta (which has just recently started working) and eggs. I drink tons of water - I have to carry the water bottle from room to room just about.

Just wanted to let you know that I have walked in your shoes and things will improve. I know exactly what you are talking about when you describe the platform food lands on when you attempt to swallow and having to cough the food back up. I still deal with this but have learned to work with it somewhat - I imagine I still have a lot of learning and adapting to do. E-mail me if you need to.

Pam

FEEST test update. In the room for this test there was a crowd! My ENT, a medical student who was observing what he did, a speech pathologist who consults with my ENT, the speech pathologist I had seen before at the hospital, and a student in speech pathology who was assisting the speech pathologist who consults with the ENT. The multiple speech pathologists first took a much more detailed history about my swallowing problems and then the test which sounds like it was bascially what Gale said Barry's ENT did (with less people in the room)--a scope and then, while looking down the throat with the scope, I had to swallow various substances; thin liquid, thick liquid about the same consistency as the cream soups I have every day), pudding-texture liquid, and applesauce.

As before, I did fine with the thin and thick liquids, somewhat less well with the pudding-y stuff and the applesauce was a disaster. The main results, actually, weren't so different from the barium swallow, although being looked at this way they could see that with the applesauce I probably did end up inhaling some of it and with the pudding-like stuff I had to cough a lot of it back out to avoid that.

Like last time, the good news was that when this happened I felt it and reflexively coughed hard until I coughed it back out. Everyone agreed I haven't lost any sensation in my throat and have a good hard cough and so I'm reacting the way I should when stuff gets even dangerously close to being inhaled--which means I don't have to worry so much about inhalation pneumonia.

Like last time, the bad news to go with this good news is that I really CAN'T eat something much more than thick-liquid texture without probably having stuff "go down the wrong way". The NEW news is that my ENT thinks this is mainly not because of any kind of permanent problem with my epiglottis but simply because my entire throat and base of tongue area are still very very swollen, according to him, in combination with the fact that my swallowing muscles are weak.

So the prescription, from the speech pathologist(s) is to do more swallowing. I was told I should try to spend 1/2 and hour four or five times a day swallowing soup or some other liquid and to think of it primarily as physical therapy--after half an hour I should quit, even if I haven't gotten that much down in terms of calories because the muscles will be too tired and if strained too much they can actually swell MORE. I also was told that I should do a double swallow method that involves a cough in between the first and second swallow to be sure I'm not inhaling anything.

My ENT reminded me that I still have 3 to 6 months of healing from rad ahead of me (and I'm starting to believe from what I've read here that even that is possibly an udnerestimate of how long healing can go on for) and that there's a good chance as the swelling goes down I'll be able to swallow more things. He told me that every now and then I should try something I'd had difficulties with before (pudding, eggs, melted cheese, etc.) to see if I could do it better since that's the only way I'd know when I was getting better BUT that these experiments definitely had to be combined with coughing at the end to be sure nothing went down into my lungs (as I said, no one actually has to tell em to cough then--when somehting goes down the wrong way I cough reflexively which is good)and should probably be done when my husband was around too (actually I don't know how much help my husband would be if I really choked but I didn't tell him that. :rolleyes: )

So some bad news, but some hope. I had been thinking of the swallowing I was doing partly as a gearing up for getting off the tube and was pursuing calories in each session, I was thinking less about swallowing as PT that needs to be done often over swallowing a lot of food at any one session. I guess I'll just have to live with the d**n tube for a while longer.

Nelie

Nelie,
I have been following your posts and want to let you know that it does get better it just takes time. When I got the tube removed I didn't care what I had to do to get it removed I wanted it out. It had become like a thorn in my side and others commented on how I favored my left side and held my arm close and kinda really held my stomach. It hurt when I laughed and coughed.

I would drink the nutrients and try to eat reg foods. I would drink the ensure or walmarts equate (350 cal.) (and still am supplementing with them) to help keep up the calories so I wouldn't lose to much more weight. When I felt that I was ready I asked my ent to remove the peg. I lost an additional 10 pounds in 2 weeks after the removal and decided to drink more of the equate.

I have tried a variety of different soups and frankly have gotten tired of the soup deal!! I have put back on 4 pounds in the last 4 weeks. Everything you describe about your situation sounds so familier. I haven't had an actual swallowing test done. They just looked down my throat with a camera while I said "EEEE" and explained how parts of my throat was still swollen. And I do believe that swallowing to much solid food could aggravate the inside and make it more swollen so back to the easy soups!!

I have noticed that things are improving very slowly I can eat some meat in the soups but very little. The Turkey pot pie soup was actually the first soup that had the meat in it that I could eat.

I got so tired of people eating around me that I just couldn't take it any more so last Monday night my son wanted something from a fast food restaurant so I got a small cheeseburger and med sweet tea. I was so scared to eat it but wanted to give it a try. I took a small bite and a small swallow of tea and it went down! It was not very easy but i did it!!!

Eating to me is work and really wears me out!! So I do depend on the equate for the calories. It doesn't taste good but what does? My tongue burns at anything sweet except for the sweet tea. I am hoping and praying that things will get better. I still can barely get 2 fingers in my mouth!!!

WE just need to keep trying things and working at it. You have much more drive than I do so I know that you can do it!! It is a shame that everyone has to go through so much!!!!

Take care and you stay in my prayers you are an asset to this site!
Love Terry

thanks for that post Terry, you're in my thoguhts and prayers too--you're like my sister in swallowing recovery! I've been wondering how you are doing. I'm getting really sick of soups too. I would give anything for a bite of a cheeseburger!

I keep thinking about things like chesseburgers that I used to eat without a thought (except for worrying about gaining weight!) and I wonder if I'll ever enjoy again.

Probably it wouldn't be a bad thing for my health if I could never have a cheeseburger again :rolleyes: but there are lots of other things that aren't quite so fatty that I also miss. It's funny, when it was hot out I craved salad and fruits and things like olives but now that its cold and snowy and the days are short I'm craving fatty/cheesy/carb-heavy foods like cheeseburgers and pasta. Same cravings as usual even if I can't do anything about them!

As far as stretching your mouth, would your insurance cover a therabite device if your doctor prescribed it? There's a page on the OCF site that describes it and why it's supposed to work better than the popsicle stick method. You can order one over the internet and if your insurance covers it they will bill your insurance after.

The speech pathologist who saw me before said he noticed today I had a definite improvement in my range of motion. It's actually an improvement of about 5 mm since I started using it, which means I can do two fingers with a little gap above them now, but it obviously has helped me somehwat (I've been using it for a month and 1/2).

We understand many insurance plans cover Thera-bite if it is prescribed. You can call Athos (go to web site) and the person there will tell you details -- that's what Barry did -- he's on Medicare and (according to he lady he spoke to) they get LOTS of Medicare people. They will send you a form which your ENT or oncologist fills out where they describe the "medical necessity" -- Barry's ENT wrote "patient is receiving radiation therapy for head and neck cancer; trismus is expected" and that was enough. Thera-bite billed Medicare.

Nelie -- our swallowing therapist gave Barry a series of exercises to strengthen his swallowing muscles, both his throat constrictors and his tongue -- since they are specifically directed at his case I am not sure they are appropriate for you, but the gal did say to do them 3x a day *in addition* to continuing to swallow stuff. He does notice a swallowing improvement in just two weeks, though I am sure some of that is because he has less inflammation. He can do some of the exercises more repetitions, as well. You might ask if there are any exercises (besides swallowing food) that might help. Barry's involve suction, pressing tongue against resistance, and some different swallowing manouvers.

Barry isn't ready for hamburgers yet but can now handle hot dogs. I am not sure if that is good or not<gr>!

Gail

I was given a couple of swallowing exercises by the first speech pathologist I went to (the one from the hospital), which I still try to do once or twice a day. He is kind of easygoing, though, and said "oh, do them once or twice a day" and I'm wondering if I should do them more. Anyway, MY ENT and the other speech pathologist seemed to really think it was more about that my throat was still very swollen that was giving me problems. That sounds hopeful if I assume the throat will eventually unswell. But what if it's permanently that way?

It's hard right now for me not to fear the worst--that I'll be stuck with only this swallowing ability for life. I mean, I know that's better than cancer taking my life but SO much of my (and my husband's) social activity revolves around eating! We live in a small city but a city that has the highest per capita number of restaurants of anyplace in the country (and it used to be the same for bookstores, not sure if that's still true since some small ones closed). Socializing with folks is often about trying a new restuarant or going to one of our favorites. If I can just get to where I can eat soft food like pasta and noodles I think we could still do this but when I'm so limited all of a sudden an evening that revolves around a meal out isn't so much fun. Anyway, it is certainly a motivator to do those exercises.....

And then there's singing. I used to haev a nice voice and I have been hoping eventually I could sing again but if my thorat remians so permanently swollen, maybe not. I guess I'm just facing some of those quality of life things.

I wsa prepared for the drymouth. Not the rest so much.

Nelie,

I too have wondered at times if where I am at is as good as it ever gets in the eating area. You are so right about the social impact - I have eaten out a few times but only with husband and kids. I still cough a lot when I am eating and I am very self-conscience about the whole thing and get anxious - and getting anxious leads to more difficulties trying to swallow. But I am so very grateful that I finally was able to go out again - I didn't eat out at all for 11 months. Although I have very limited food choices I can usually find some kind of fish that I can eat. The time issue is the thing, the servers keep coming back and asking if everything is OK - is something wrong with the food? My husband has gotten good about slowing his eating down or having another beer to try to finish up when I do, but a lot of times I just get a go box. Like you say, not as much fun as it used to be, but I have seen improvement and have to believe we will continue to improve as the months go by. We have to believe we will improve or we will get too depressed.

I was thinking about last year when I was at the same point as you post treatment. You mentioned trying scrambled eggs and having trouble - I remember that scrambled didn't work for me - the pieces of egg separated and it was like trying to swallow pieces of gravel. I tried them soft-fried in butter and left them runny (which I never liked before) and they were much easier to swallow. I recall eating quite a few eggs in the early days and still eat an omlette every morning. I have progressed to where I can have cheese and mild Pace salsa in them - breakfast is my favorite and easiest meal to eat.

Just hang in there and keep trying - it's all we can do.

Pam

Nelie - I can add my encouragement too. The healing took twice as long as they predicted for me. I am over two years out of tx and still getting little bits and pieces of function back. It seems like it was about 8 or 9 months before all the swelling went down in my mouth and throat. With the whacked lymph nodes not there to help, the swelling is persistent.

My PT had me gently massaging my own throat and neck to help with circulation. As the numbness eased, the massaging felt really good. Just easy, light pressure with the finger tips, in circles was all it took. Also, the swallowing exercises didn't seem to help much at the time I learned them, and it was tough to stay motivated to do them. But, my swallow did improve as the swelling receded. I didn't get all of mine back, but I have enough now to drink down meds with water and sips of a milkshake now and then. And that progress took all of a year. Be really patient with it, and double your time expecations for progress. With some luck you will get a bunch of it back. Don't give up. You can do it. Tom

I've found that in social situations it's the other people who feel awkward about my lack of ability to eat regular food. Most people are surprised to find that I don't eat "regular" food. It's just not that important to me. There are times where I would love to have a cheeseburger or pizza, but I can't see that happening anytime soon, if ever. I will fight the good fight and keep doing everything I can to regain as much as I can. With that being said, I know I'm healthier now than I was before.......no junk food, no fast food! Never surrender!

JOhn

Hi guys,
I have no idea whether this will work for any of you, but it is 'worth a shot'. I never had a peg and it's been a long time, but I had to cut everything into tiny pieces and make certain that the food had lots of moisture. I also ate it with lots of water and fortified milk(tbsp carnation Instant Breakfast in milk) for extra protein and calories.

When I had swallowing problems with things 'getting stuck in throat', I found that if I went to sink and cleared the blockage, that I could come back and eat the rest of the meal. It's like my swallowing mechanism had now figured out what it was supposed to do and now worked. Still works.

Nelie, I have no idea if this will work for you, but please give it a try. I find this still works for me. Read while you eat. It may help. Also, I'm not certain you are trying to eat the right foods. Mashed pots were a nono for me for years.
I would have thought scrambled eggs would be good, but try them gain after blockage. According to my sister, a PT,OT, speach person, liquids are harder to get down than soft foods. When my Dad my sick she mixed his mashed pots into his soup to make it easier to swallow. There is also something called 'thick it' that makes liquids easier to swallow. I think this is available at the drugstore.

Don't give up. Keep us posted. I'm rooting for you.

Take care,
Eileen

Eileen, as for this: "According to my sister, a PT,OT, speach person, liquids are harder to get down than soft foods."

I've heard this too but not in my case. The reason why is that I am taking very small sips when I swallow and I can push small amounts of thin or even slightly thicker liquids down the right way, even though my epiglottis isn't fully covering the trachea, by double swallowing--which is apparently what I learned to do unconsciously at some point when regular swallowing failed me, and now I am doing it more consciously and clearing my thorat after each double-swallow, just to be as safe as possible in terms of not having stuff go down teh worng way or irritate my larynx.

Anything with any solid pieces in it, or even very thick puddinglike texture, has more weight to it, doesn't get pushed back as far with a double swallow as liquid does, and is more likely to head down my trachea. Small solid pieces (like you have with scrambled eggs, diced peaches, etc.) actually tend to get stuck all over my throat and the roof of my mouth--and taking a sip of wtaer to rinse them out of there doesn't really help. Maybe it would if I could really swallow a largerrmouthful of water but I can't. I can only swallow with very small sips.

The mashed potatoes I had had extra milk and butter in them as well as a bunch of gravy and they were still just on the edge of being too thick for the double-swallowing technique to work.

I think thin liquids, such as water, are a bit harder than thicker liquids like soup, though. Creamy soups seem to be about the best texture and the milk in them means they mousten all the really dry spots on the roof of my mouth and back of my throat. And you're right about spitting things out and trying over. Even with just doing thin and thick liquids I still sometimes have to do that because I take a larger mouthful than I can handle swallowing or its like I just can't swallow altogether sometimes first thing in the morning--its definitely important to keep trying then!

I just did a 30 min session of swallowing coffee with soymilk in it, as I was reading the NY Times on the web, and just to give you an idea of how small the sips are (and how long each one takes when I have to double-swallow and then clear my throat between each sip), in half an hour I got down maybe half of a smallish coffee-cup of stuff. This is the sort of thing that makes me despair of ever getting off the PEG. But I think I just need to accept that the progress will be slow, and will only get better if I really do this 5 times a day. I did notice my swallow seemed to be stronger this morning in general.

I will keep you all posted. And thanks for the suggestions and support.

Nelie

Nelie,

Keep working at it. When I first tried to drink after my surgery and treatments, I had to use thick-it in everything and took the liquids by a spoonful. Now after a year, I'm close to being back to normal. That is with somewhat thicker liquids such as milk. Still have some trouble with thinner liquids such as water. Some times the progress is so minimal that we don't really notice it, yet it is there.

John

John, What are you able to eat now in terms of food? Are you off of tube feeding and if so, how long did that take you?

Nelie