Message to tonsil cancer survivors:
This is the first time I've posted on this forum, don't know why I forgot about all your wonderful experience out there.
My husband had a tonsilectomy 8-5-03 (left)followed by 7 weeks of combo radiation/chemo treatments. He was hospitalized in October for 2nd & 3rd degree burns on his neck and upper chest area. In November he was again hospitalized with a bronchial infection. He has been relying on his PEG tube for all nutrition since mid-September. The doctors told him he would eat by Thanksgiving, Christmas, New Years and now they say hope for Valentine's Day. He is very frustrated and his spirits are low. His main problem is the burning stinging sensation on the back and sides of his tongue and the post-nasal drip that adds to the thick saliva causing him to still have to spit-up the "gunk" all day. The doctors just tell him to be "patient" that he is just a slow healer. He can only swallow Ensure after he swishes his mouth with UlcerEase and Triple Mix, but solid foods and most liquids sting too much to get down.
Has anyone had this problem so long after treatment ended? Any suggestions on what to do?

Lorie
Ontario, CA

Hi Lorie,

I am sorry that He is having so much trouble.

The regulars here are going to think that all I talk about is yeast infections, but whenever I hear "burning sensations" I think possible yeast (thrush) problems. Any of us that have limited salivia and especially if taking antibiotics should ask for something like Nystatin swish. The problem I had (and others have reported) did not visually appear as the typical thrush infection with the white patches etc. Instead it was burning along with sometimes itching and sometimes a fading of the sense of taste. Sometimes Dr's miss the thrush because it doesn't look like typical thrush. The treatment is easy enough that it is worth a try to see if it helps.

In every case for me the burning would go away within a day of taking the Nystatin.

My other thought for you is to see if he can take some additional vitamins by crushing them. The healing process burns up a lot of stored nutritional elements.

I hope this helps

Hi Lorie,

Your husband and my dad are in similar situations. Dad finished rad. on Nov. 6th for tonsil SCC and is still unable to swallow ANYTHING. He thought he might be able to eat mashed potatoes on Thanksgiving, however he could not. Then his mouth got worst and he did not even try to swallow anything, it even hurt to talk. His speech is completely slurred and extremely hard to understand. Does your husband have this problem?

They also told him that he is a incredibly slow healer. He uses the mouth rinse Mark suggested, as well as Diflucan for possible thrush. However, nothing seems to help him. Hopefully, your husband will have better results.

Mark
Thanks for the reply. We keep asking the doctor's about "thrush" and they just keep responding that it doesn't "look" like thrush. Until reading info on the patient forum I was unaware that it could mascarade as just a burning stinging sensation. I will DEFINITELY tell them to let him try the Nystatin. I really was concerned when he was taking antibiotics but they didn't seem to think it was anything to worry about. I didn't really think about adding vitamins to his food. I feed him Resource Support that is especially designed for cancer patients and just figured there was enough vitamins, minerals and protein in those drinks. I'll try adding more to his food...any suggestions on a particular vitamin that aides in healing?? I think vitamin E is supposed to be good and I also read that Aloe Vera is good, have you tried these?

Also we were thinking his body may be weakened additionally by the fact that he had to have hernia surgery 2 weeks ago. The hernia developed as a result of all the coughing and spitting up he was doing during treatment.

Thanks again for your help, Lorie

Diana-
I'm sorry to hear that your father is having the same problems my husband is having...I KNOW it is very very frustrating. My husband did try the mashed potatoes at Thanksgiving just as your father did. He was only able to get down 2 spoonfuls and then it hurt too much. Yes, he stopped trying anything after that and even water was stinging. We had him drinking water that contains fluoride to help his teeth, but yesterday we discovered that it doesn't sting if he drinks water w/out fuoride, we never thought about that.

Occassionaly my husband's speech is slurred, but it seems only after he has been talking for a little while. He does get frustated when I have to ask him to repeat himself because I didn't understand what he was saying. Fortunately for us this is not very often.

I'm sorry to hear that the Nystatin/Diflucan didn't work for your father. We are going to try them and see if it helps my husband. We are also going to the dentist (specializes in treating cancer patients) today and are hoping maybe he has some suggestions, as the Oncologists and ENTs don't seem to know what to do. I'll let you know if he recommends something, maybe it can help your father too.

Keep your head up. Lorie

Lorie, as a tonsil cancer survivor, maybe I can share my experience here. Although I didn't have surgery, the chemo/radiation treatment was so intensive that swallowing was extremely painful and I lost my voice for over a month. My healing process was also a relatively slow one since I'm diabetic.I still have ulcers on my tongue.When I was hospitalized in my latter half of treatment, nutrition was a big problem and my oncologist frowned every time when he checked my eating and drinking record. He warned me that if I continued not taking enough food or water, he would get me a feeding tube. I feared the idea and told myself no matter how much pain there was, I had to tolerate it and get myself enough nutrition. It was around christmas time and my target was to leave the hospital on new year eve to have family union, which to everyone's surprise, I could make it.Before meals, I took all kinds of pain medicine and used gargle to numb my mouth first. I waited for about 15 minutes for the medicine to take effect. Then I swallowed the food (it was plain,thin congee only)with tears in my eyes. Every meal was a great hurdle but I kept on telling myself that I had to surpass it. When I was eating, I would send my relatives away so as not to frighten them. In the afternoon,I took a cup of icecream. Not too bad to swallow but raised my blood sugar level and I had to get my blood test 4 times a day.The level was so high that the nurse would yell at me asking me what I had eaten that could raise my blood sugar level so high. I said just penadol syrup and ice cream. My oncologist told me to throw away the diabetic concern at that moment since my only mission was to get nutrition. Yes, drinking water was also a nightmare. It was a knife cutting feeling but I reminded myself all the time that if I didn't drink or eat, I could not win this battle.So to look back,I think that it was strong will and caregivers' support that helped me go through all these hardships. One more thing, it is by trial and error that I could increase my list of food that I could take. There may be frequent setbacks when something that could be eaten yesterday could not be taken today but vice versa. Where there is a will, there is a way. This is my motto in life. Never give up.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Lorie,
My experience was almost identical to Karens. It was a couple of months post Tx before things started to slowly improve. I also did it without a feeding tube.

One thing you mentioned that caught my eye was antibiotics. With dry mouth they almost always cause a thrush bloom. A Nystatin swish & spit like Mark suggested or diflucan will knock it out. Thrush infections can be very serious if left untreated. They can become fatal if they go systemic.

Early post treatment is a very hard time. Make sure that his pain meds are adequate. I was on pretty heavy duty pain killers a good 2-3 months post Tx. It took a long time for the radiation burns and blisters to heal along the sides of my tongue which were the most painful. The good news is they did heal. The skin on my neck was the first to heal. The back of my throat - the last. I used to take 2-4 15mg morphine tablets prior to eating or drinking. I also used "pink magic".

The thick saliva and post nasal drip just stopped one day (it seems like a month or two passed).

About vitamins, in the book "Living Well With Cancer" by Katen Moore and Libby Schmais, they don't recommend anything other than a daily multivitamin. They recommend clearing it with your nutritionist for any other vitamin plan and never megadoses under any circumstances.

I can certainly relate to his frustration having been there myself in the not so distant past. I promise it WILL get better.

I should follow Gary's comments about checking with your medical professionals. What I have read is that megadoses of vitamins are an unknown factor when in ACTIVE treatment ie: currently in radiation or chemo therapy. I have not read or heard of any study that recognizes good or bad effects during therapy. I did ask my radiation oncologist about my fairly high doses of vitamins during my treatment, and he didn't have a problem.

Gary IS CORRECT It would be wise to discuss vitamins with your doctor.

In my case the professionals were more or less indifferent and seemed concerned about calories only. There are several good books in print on the subject of cancer and nutrition I urge everyone to consider learning as much about this subject as possible. To me it is only logical to believe that the body is going to need much more while rebuilding after the effects of treatment.

I took a fairly high potency multi-vitamin and vitamin E, omega 3 (DHA)suppliments and flax seed oil. I always took them together with food and tried to eat as much colored plant (salad) foods as possible. When the pain was bad it would all go in the blender (pills would be crushed first).

Karen-

Thanks for your experience. It really helps to know that other people experience the same thing with some foods/drinks being ok one day and then not ok the next. After reading your story I'm very glad my husband had the PEG tube put in before treatment started. When he felt brave enough to try to eat/drink something and then it stung really bad he wouldn't want to try for a long time after that...the PEG tube gave him this option...he didn't have to force it down. The PEG tube also has allowed him to only lose 27 pounds total and he has gained 5 of that back already.

After reading the wonderful imput from everyone on this site he is feeling in much better spirits already. There is nothing like hearing from others who are going through the same thing to let you know you are not alone and that you are not "weird", as his radiation oncologist jokes with him about when he doesn't know what else to say.

Lorie

Gary & Mark-

Thanks so much for both of your responses. I print them up for my husband and you would not believe how much this has raised his spirits. Gary, it seems as though you are the closest to my husband's experience, sans the feeding tube.

For the first couple of months post-treatment his pain meds were very high...50mg duragesic patch and 10mg dialudid (he was allergic to morphine), and tylenol for any body aches or headaches. Of course it didn't help when he had hernia surgery to repair the hernia that developed from all the coughing and spitting caused from the "gunk" in his throat during treatment. The past week & half we have been able to start reducing the pain meds...and he is able to manage with vicodin and a 25mg patch.

We convinced the dentist to prescribe the Nystatin that you suggested, Mark. He started using it last night. This morning he said he now feels like there are scabs on the top back of his tongue...where the stinging/burning sensation was. He doesn't actually see any scabs it just is the best way to describe the rough feeling on his tongue. Is this something you experienced? He is continuing to use the Nystatin and we are hoping the "burning" will calm down soon.

The doctor said it is ok for him to take vitamins and said a multi-vitamin and vitamin E would be good. I asked about Aloe Vera liquid. He didn't have any problems with that. Do either of you know of anyone who used that? Did it help?

Thanks Gary for mentioning that the post-nasal drip just stopped one day. After the burning, the post-nasal drip has been his biggest complaint because it adds to the thick saliva. He still has to wake up in the middle of the night to swish his mouth out with "UlcerEase" to break it up and allow him to spit it out. He looks forward to the day when he can sleep through the night and can go to a movie without fear of having to "swish and spit".

He is also wondering when he will feel hungry? How long did it take before you actually felt hungry? The doctors say maybe when he gets the PEG tube removed. That, of course, is a catch22. He can't have the tube removed till he eats enough to get proper nutrition and maintain his weight, but he doesn't get hungry or have a desire to eat so he continues with the tube feeding for nutrition. Any suggestions?

Thanks for the uplifting messages. You guys are all lifesavers!

Lorie

Hi Lorie,
I am 6 months from finishing radiation and I also had a tube during my treatment. From about the 4th week of treatment on I used only the tube other then lots of water by mouth. I ate nothing by mouth, it was just to painful and didn't taste good. I didn't lose all that much weight and have put most of it back on already. I started trying out food about one month-6 weeks after I finished treatment, soups only with some crackers in it. I would get sooooooooooo discouraged each time I tried to eat anything. I missed eating so very much and wanted to feel "normal" again. I cooked so much during that period that my poor husband put on about 15 pounds! I spent awhile using the tube AND eating by mouth so I would get the proper nutrition. Then it seemed like all of a sudden my saliva improved and the soreness in my mouth improved and I could add a few more things to my diet. The day I drank my first Pepsi was a GREAT day for me! Now, 6 months out, I meet my 22 year old for lunch every Thursday at Applebees and we both order French Onion soup and the Southwest Steak, light on the peppers and heavy on the cheese............I clean my plate and it's delicious. The only troubles I had when I first started eating more then a few bites was that I would get SOOOOOOOOOO hungry, my stomach would growl and act up for hours after I tested out some food.
I am not a patient person, hate to sit still and I'm always on the move. This health crisis puts the brakes on your life for a short amount of time and then you find yourself at the starting gate again but with a different perspective on what the race is all about. Don't try to measure his progress daily, try to do it weekly. I don't remember who posted that when I was still sick from radiation, but those words made such sense to me.
Patience is the treasured card in this game, kind of like the "get out of jail" card in Monopoly...........we all gotta have one to get past go!!!
Take care, soon you will be advising others on this board.
Minnie

Thanks Minnie-

It is good to hear that the time line we thought was sooooo long and not "normal" is actually the same as many experienced. You are right that we need the "patience" card. It is rough to remember that when one day is good and the next seems bad again. I try to do as many "normal" things as possible but meals are just not "normal" and it is hard not to see that.

My husband's tongue burning seems worse today after using the Nystatin and we are not sure if it will get worse before better. The medicine doesn't hurt to use, so he wants to keep using it just in case in a couple of days it will be much better and he'll be able to eat.

Well, I must continue to pray for patience and for God to grant it to my husband as he makes this difficult journey.

Thanks for your encouraging words. I hope one day this will all be helpful to someone else going through the same thing.

Lorie

Hi Lorie,
If the Nystatin swish & spit is too irritating at this stage, you may wish to try Diflucan instead, besides Diflucan is the most powerful medication in it's class (I was taking 400 mg a day for a few months - in contrast, female yeast infections are treated with 1 100mg tablet - I was a living experiment - they told me they have never heard of anyone getting that high a dose for that long but I found out later that HIV/AIDS patients are given up to 800 mg's a day).

Early on I had fair days to horrific ones. Treasure the fair ones! Just when it seemed I coudn't go on any longer it would lighten up and I would get a little relief. I remember praying a lot for God's help, healing, comfort and strength during that period.

My experience was very close to Minnies (sans PEG tube of course). It took a month for my taste buds to start returning. Until then I had to force myself to eat. When I was able to try to eat (semi-solid foods at first - I had been on a liquid diet forever - by the way, I hated Boost and Ensure - it coated my throat and made me gag - I used Carnation Instant Breakfast instead - I tolerated milk pretty well). I had jones for all kinds of things, many of which ended up going to the dogs (I had to put them on a low fat diet!), but at least I tried them (probably drove my wife crazy but at least she was encouraged by the return of my strength and appetite). My experience was that natural foods tasted the best (in contrast with processed foods). It was about 2 months post Tx that my appetite finally returned. I still have a small problem with dry things like bread, cookies or chips but today I ate a whole bag of popcorn at the movies and it was no problem. For some odd reason I have taken to drinking a lot of Coke - I find that the carbonation helps swallowing a lot more than just plain water - it drives the doctors nuts though -they frown on Coke (I drink a lot of water also). It took a while before my throat was healed enough to tolerate anything carbonated. You'll just have to experiment with what works - and it will be dynamic and changing all the time. Acidic stuff was hard to tolerate early on, like fresh vegetables, salads, salad dressings, fruit and fruit juices - all the healthy stuff! You should be working with a nutritionist.

I am kind of surprised that you are getting Rx's from your dentist. My oncologist became my primary care doctor and coordinated and prescribed all of my medications - he also did the necessary monitoring by ordering and reviewing the bloodwork and other tests. Oncology is a kind of highly specialized internal medicine.

Weaning off pain meds helped also but don't be too hasty on that one. Pain management is a very important part of the recovery process.

The book I refered to in an earlier post was exceptionally good at covering almost of of these details. It was written by 2 oncology nurses and is very up to date. I didn't have to bug the advice nurse quite as often. It was espcially handy on weekends when my only other option was the ER.

If you had trouble with patience before, this will be a groundbreaking experience ;-)

Hi again Lorie,

I am so glad to hear that his spirits are up! That is a very important step in healing. The nystatin would work for me usually in 2 days or less. I had patches of stuff that would show up after taking the first doses. These patches would then go away. I can only guess at what it was (I imagined dead fungi) but I know the burning would go away. In your husband's case, he is in the window where the pain may still be from the effects of radiation and chemo (I didn't get chemo). The fungal (thrush) will definately make it worse so continue with the Nystatin at least a few more days. Nothing wrong with Diflucan either except it is a systemic (total body) type treatment and can be hard on the liver. Whereas Nystatin is fairly harmless except to fungi that it comes in contact with. If it were me I would reserve it for later if the Nystatin works. By the way I would take it for at most 3 or 4 days and then would not take it again until symptoms came back (2 or so weeks at first).

With regard to eating, I was perhaps fortunate in that my appetite returned rather quickly. I had a prime rib about 1 week after the end. Red (in fact rare!) meat was the only thing that tasted right throughout my treatment and if tender was fairly easy to eat. I took this as a sign that my system needed what was in the meat to rebuild).

Everybody is different in the way they recover. My suggestion is to be positive enough to keep your spirits up and do not let yourselves get down at all if you don't see recovery happen as fast as you want. As others have said if you look for positive change daily you probably will miss it, but if you look back weekly you will realize it is happening

AND GARY I am suprised! COLA?! that stuff is probably worse than anything.

Hi Mark,
well it doesn't have any Prop 65 warnings (mutagen/carcinogen) so it can't be all THAT bad. So what if there are 28 teaspoons of sugar in each can! Only real men eat sugar. I'm sure some idiot will come out with a study soon that says Coke is good for you, just like they did with butter, pizza, tomatoes, etc.

Liver damage was a big concern of mine also, especially since they discovered that I have hep C when I was being tested pre-treatment. I took a ton of Diflucan and it didn't hurt the liver thank goodness. It did suppress my white cell count and is known to do so. They eventually switched me to Nystatin and it seemed to work fine (and my white cell count returned to normal).

Like you also the first solid food I ate was meat -a very rare filet mignon and was it good! Slid right down. I send a lot of meat back these days because restaurants don't get how to cook meat rare (or they're too paranoid). Pasta seems to be the easiest to eat, right up there with Chinese food.

Gary & Mark-

Well, after using the Nystatin for 3 days my husband's tongue is burning more than ever and he is spitting up more "gunk" than he had been for a while. He stopped using it last night and I'm hoping it calms down soon. Did either of you have that problem?

The one soothing thing that he can actually drink is iced tea. He forces down Ensure when I have to be gone to work, he can't feed himself using the PEG tube (too difficult, needs 3 hands, because we manually do it...he does not have a machine that drips it in). He has found that, amazingly, coke doesn't hurt. He stopped drinking it though, 3 weeks ago, because we were afraid that it my have been inhibiting the healing of his tongue. There was only a slight difference when he stopped. Both the oncologist and the dentist say that if it doesn't hurt then there is no problem with him drinking small amounts. He does have to be careful to brush his teeth after so as not to develop cavities.

As far as the dentist prescribing the Nystatin, we have been fortunate enough to have a dentist that specializes in treating patients with oral cancers and he is in contact with the oncologist (who is the one that recommended him).

My husband's spirits have been very low the past few days. He says he feels as though there is something wrong because he isn't healing. He is also experiencing pain in his shoulders and left elbow (same side they found the tumor). Do either of you know if shoulder pain is a side effect of the radiation? He does have an oncologist appointment on Thursday and we will definitely mention this. I am trying to be positive for him and remind him that there were times he felt things wouldn't get any better, especially during chemo, and that all got better.

Thanks again for all your support. I print out your responses for my husband as he hasn't moved into the computer world yet.

Lorie

Hi Lorie,

I am sorry that the Nystatin didn't help.

That you have a dentist that specializes in oral cancer is really great.

As for his shoulder and arm pain, I had that and even recently have had shoulder pain. I had a radical neck dissection as well as the tonsillectomy and radiation. Much of my shoulder pain has to do with the surgery. Radiation is the gift that keeps on giving and some muscle pain is a possibility (starts in the neck and moves to the shoulder and back).

Please do mention all of the things that bother you to his oncologist. The troubles he is having are worse than some folks had but not outside the experience of several people here. It did get better for them, and I truly hope he starts to feel better soon, and let him know those feelings of doubt he is having are also common.

Take care

Well today is 15 weeks post treatment and my husband is still not eating. His tongue is getting better though, only burning if he tries anything acidic (juice or anything with tomatoes).
He tried a scrabbled egg and it got caught in the back of his throat and he started gagging. Thank you Gary for sharing about Carnation instant breakfast- that is working great! The Ensure/Boost was too thick and would add to the "gunk" in the back of his throat.

Don (my husband) is still discouraged because just when one thing seems to be getting better something else appears to take its place. He now has an ear ache that radiates down into his jaw and has made hearing from that ear difficult. The shoulder & arm pain are still there but with daily massages they seem to be getting slightly better.

The medical oncologist made us mad. He didn't seem to care about any of the symptoms and only recommended a disphasia clinic after I broke down during the visit...I was very very frustrated. His attitude has changed since the CT scan came back all clear...sort of "I cured your cancer now go away". We were very happy with our oncologists till now.

On the bright side, Don saw his primary care physician yesterday. He was GREAT!!! He asked all the right questions about every symptom and checked everything out. He is refering us to a GI specialist to send a scope down Don's throat to check for swelling and to see if the muscles that control swallowing are moving properly. The amazing thing is that no one has sent a scope down his throat at all during this entire ordeal. Don told him if they got the swallowing to work better he could put up with the burning/stinging tongue and would be able to eat bland foods. We were very happy after leaving...this doctor has a game plan and he spelled it all out. He also said sometimes the specialists have a very narrow field of vision and once you are out of that area they don't want to see you. Have any of you experienced this also?

We are really hoping this works because Don has had the PEG tube in for over 5 months now and we have been advised that if it has to be in for over 6 months they will have to replace the current one with a new one. Hopefully they will get the swallowing reflex to work and the tube can be removed for good.

The doctor believes that the shoulder and neck pain are just muscle aches, as some of you mentioned. Guess I will be continuing with the daily massages (hummm...wonder if this was planned). The ear ache is a result of the post nasal drip that Don is still experiencing. They have presribed Allegra for both .... has anyone had ear pain? When does the post nasal drip stop? The spitting up "gunk" is slightly less and it is now looking more "normal" in color...if that is possible.

Don has been putting vitamin E on his tongue...it seems to be helping. I have been putting Acidophilus in his food...trying to prevent any yeast from growing.

This is surly a rough road and I have nothing but admiration for all of you who have gone before us, you are truly an inspiration!

Thanks for all your help and encouragement,

Lorie

Hi Lorie,
I'm glad the Carnation Instant Breakfast is working for you. I liked the espresso flavor - for some reason I never lost the "coffee" taste bud. Coffee milkshakes worked well also. It took time for my tongue to heal also. It and the back of my throat where I received the bulk of the radiation healed the slowest. It takes a lot of patience. And I too struggled for a long time with multiple issues. I had an ear ache for a long time due to the eustacian tubes being fried out and having to regenerate (causing a fluid buildup). I don't think that the swallowing issues are that unusual this early. I still have swallowing issues once and a while. I gagged on eggs for a while. Have him try experimenting with the size of the morsel and where its positioned in the throat on the tongue prior to swallowing. Also wait until the really heavy post sleep gunk clears before attempting eating. Moist is good, butter, olive oil and mayonaise are great lubricants. I also always used a straw when drinking liquids.

The post nasal drip and thick saliva just stopped one day. The gave a decongestant and it helped a little - but it will dry you out though so it's a trade-off. I found myself just taking one before bed. A humidifier is a good thing to have also - I still use mine.

It's very easy (and normal) to be discouraged at this point - you may want to ask your doctor about anti-depressants.

Hi Lorie

I think the oncologists attitude is un-called for. Just becaue one follow up scan came back clear doesn't mean he washes his hands of your husband.. What about regular follow ups, is he not going to do those either?

I'm about a year and a half post surgery for first time around, still get sore shoulder at times. Took several months after the second surgery to get rid of a lot of soreness, something like about 4-6 months. I'm surprised I can't forcast weather with the aches and pains. Asked the surgeon about the surgery, and post surgery pain, he said I really didn't want to know the surgery details and what they do. OK...

Something a friend suggested to me as a home remedy about thrush was vodka and cranberry juice. No deal on the vodka, the alcohol is not good. The cranberry juice made sense though apparently something in that helps to fight yeast type of infections.

As far as getting appetite back for eating orally, kind of just have to force oneself to start, appetite then comes back kind of natural. Like "oh yea, I forgot what food tastes like, yum!"

Bob

Hello Lorie,

What a tough, slow healing process your husband has had.

My cancer was on my tongue - had 1/2 my tongue removed in September and finished radiation about 5 weeks ago. I definitely had an easiler recovery, but I did have trouble with that thick saliva gunk, making sleep very hard.

I had a prescription cough syrup - guafensin (robitussin) with codiene that helped. Also the hydrocone/lortab I had for pain enabled me to sleep more than 2 hours at a time. I had to sleep in an almost sitting position with 3-4 pillows propped under my head and shoulders. Also kept (still do) a very large glass of water or water bottle next to the bed. I used a humidifer for moist air.

During the day warm drinks help to thin the thick saliva. I quickly went back to coffee (compared to other food & drink), also herbal teas, thin soups or just warm water. I didn't like drinking Ensure because it would make the mucus thicker. I liked soymilk, it was thinner than regular milk or Ensure. Recently, I added Ensure (chocolate or butter pecan flavor) to my coffee which made a nice treat and thinned the Ensure making it easier to drink.

Yogurt, soy milk and ensure was about all I could handle at the end of radiation when my tongue and throat were burning. The yogurt may help with thrush because of the yogurt cultures. I had/have to avoid most acidic/citrus/tomato. Also spice and pepper are hard. I have to drink at least 4 large cups of water per meal to swallow food, I also have physical troubles swallowing due to losing have my tongue. I kept an open can of chicken or beef broth around to add to foods - like meat or vegetables, potatoes, etc to help make it easier to swallow.

I hope some of this helps, i'm getting a little sleepy and not sure if I'm making any sense. I'll try to add more tips if I think of them.
Hang in there,
michelle

ps
Another vote in support of anti-depressants (I take a selective seratonin reuptake inhibitor called celexa and have found that it keeps me upbeat, and I see a therapist)

Thanks again for everyone's wonderful "handy-hints" and loads of inspiration and support!

Some things are improving slightly...the AllegraD Don's primary physician prescribed is actually helping the post-nasal drip but of course is making the dry mouth worse. Don says he may try to take it only at night like you suggested. It hasn't really helped the ear pain and we plan on seeing the ENT for this just in case it is damage from the radiation and not just a side-effect from the post nasal drip. The top of the tongue was getting better, until the radiation oncologist examined him and stuck his fingers all around...now it is hurting more again, but we at least know what caused that. Don says it seems the under-side of his tongue is healing faster than the top, but given the news the GI specialist told us today that will not really matter.

Don had a barium swallow x-ray yesterday and today we saw the GI specialist about his problem swallowing. Well, again good news and bad news. Good news was it didn't seem too bad. Bad news- there is slight tightening of the esophagus and it appears that he is aspirating the fluids he is drinking into his lung. So, he told Don not to drink thin liquids like water. He said ok for the Carnation instant breakfast and he wants him to try shakes, but we told him the only problem with that is that it sticks to the "gunk" in the back of his throat...boy, the fun never ends. The GI specialist is going to get the insurance to approve a scope test of Don's escophigus and is referring him to a speach therapist so that we can learn what foods are safe for Don to try. He is also referring him to the ENT to check the area of the tonsil (where the tumor was removed) where he thinks the problem is that is causing the aspiration and difficulties swallowing.

Needless to say Don's spirits are low again, but on the bright side he is getting a little mad at everything now. He is going to go golfing on Sunday with "the boys" to let out this pent up anxiety. I am proud of him for this. At least the hernia is healing well and he can now move around and drive and isn't stuck in the house as much.

We will be seeing his primary care physician Monday and I will be asking about anti-depression meds for him. I went to my doctor Wednesday and now I'm on Lexapro.

Again thanks for all your support and words of encouragement.

Lorie

Hi Lorie,
I know just how Don feels. I was pretty angry for a while also. I also went through a bout of depression. It's pretty tough to subject your body to this kind of beating and not have some (really) bad days. I don't know how my wife put up with me sometimes.

By all means get the earache checked out but they are pretty common post rad. My doctors weren't surprised. They checked it out on the MRI - said it was a common radiation side effect. I had some fluid buildup in the mastoid area for several months - at times it interfered with my hearing. Then one day it just went away and that part of recovery returned to normal. I bumped up my pain meds to deal with it. I haven't had any earaches or hearing issues since. If the decongestants are making a big difference I would stay with them - if not, the dry mouth being intensified is a factor to consider. Post nasal drip would more likely give you a sore throat.

A lot of the swallowing problems are from lack of saliva and also texturing of the muscles in the neck from the radiation (of course the thick mucos is of absolutely no help). It should improve over time. And on aspirating fluids - it is never a good thing but it also comes with the territory and it will also get better, like everything else, very slowly. There were times I thought I would NEVER stop gagging/choking on food or water. Tell Don to use a straw when drinking liquids - that helped me a lot. Eating and drinking was a real chore sometimes - ALMOST made me wish I had gotten a PEG tube.

You can easily water a milkshake down by adding more milk. I also used to add a scoop or 2 of nestles Quik into the Instant Breakfact for 100+ more calories.

When I was feeling really sorry for myself, early in recovery, I went to a funeral for a friend who died from pancreatic cancer. I had to drag myself there I was so weak. He was Dx'd the same month I was. I realized it could have been much worse. They have a saying in AA "I felt bad because I had no shoes, then I met a man with no feet". It's all about keeping a healthy perspective. It's good that Don's getting out of the house with the guys -I am sure that you can use the break too...

Hi All-

I know it has been a while since I last posted, life has been hectic...but I'm sure you are all aware of what that is like. We have used all your wonderful handy hints...thank you very much. Don- my husband- had a barium swallow test about 3 weeks ago and we discovered that he was apirating his fluids into his lungs. With that they scheduled more tests and one of the doctors scared us when he stated that if they discovered nerve damage that the feeding tube could be in for life. Needless to say we were a bit depressed. However 4 days ago he decided to try to eat again...and guess what...it worked. He can now eat spaghetti with lots of sauce and mashed potatoes & gravy. Soup is a good thing and he is actually having fun trying new things...even if some things are still far out of reach. Though it has been over 5 months post treatment and we never thought it would take this long to eat his first meal but better late then never.

He still has an ear infection and it is possible that he'll have to have a tube put in to help with the fluid build up...but the ENT believes the antibiotics will handle the problem. Don is still frustrated with the inability to hear but the eating thing has lifted his spirits.

Don has to do exercises for his jaw because it is getting very stiff...but the dentist noticed that he is able to open his mouth a lot more than he could 1 month ago.

So, for anyone who is discouraged, as we were, just remember the story about the turtle and the hare. Things may seem slower but patience is something we have had to learn through this entire experience. I know we still have a long way to go, we are definitely slow learners in this field.

Thanks again for all your words of encouragement...you are all GREAT!!!

Lorie
_______________________________________
husband diagnosed with tonsil cancer 8-7-03/stage III/35 IMR/6 chemo

That is REALLY good news, Lorie and I am very, very happy for both of you. Thanks so much for posting. It always great to hear about progress and improvement.

Lorie,
I had my esophagus dilated approximately 3 times due to a stricture or blockage that occurred following radiation. It was a simple procedure and was successful and I no longer have any problems getting food down the esophagus...once I can swallow it. My swallowing is another story! Anyway, have no fear if an endoscopy or esophageal dilation is required.

Danny G.

First time for this, so bear with me. My father was diagnosed with squamous cell cancer of tonsil and also extended to his tongue. Was experiencing trouble eating, which caused the doctor's visit initially. Due to the size and position of tumor, surgery was not an option. July of 2003, feeding tube was inserted and also a port was put in to help with chemo. Had 37 radiation treatments with lo dose chemo at same time. Finished radiation Nov 2003. Heavy chemo began shortly after. Finished chemo in Jan of 2004. Still cannot eat or swallow anything by mouth (it's been over 6 months already). Experiences dry mouth quite often. Constantly tries to cough up phlem (?), not sure what it is. Can't seem to get it out. Fighting depression. Complains of earache and pain in jaw quite often. Oncologist has him on diludid and hydrocodone for pain. Doesn't seem to be enough. Trys to eat a little. He thinks it goes down, but he will cough, and whatever he has eaten, returns. Just found this website today, hoping someone has been thru this, and can tell me its normal. We still have to do post treatment PET scan. Seeing Oncologist tonite- hopefully things will get better.


Thanks,
Vickie M

Hi Vicky,
I had earaches after my radiation treatments but the pain was not something I needed any type of pain medication for. I also had aching in my jaw. I have a feeling I am younger then your father so was able to handle the pain better. He is still only a few months from finishing treatment and it takes a long time to see a lot of improvement.
I would keep at the doctor about the fact that he is still in pain and where the pain is. He shouldn't have to suffer.
Take care,
Minnie

Hi Vicky,

Welcome to the site. Sorry to hear about your Dad, but most of what you are describing is not unusual.

Please take a minute and do two things.

Start a new thread so other members can find this message. I'd hate to see it get lost, there are some very knowledgeable people here that can offer advise.

Also, please read other messages on the board and the main body of this site. They are both have great search engines and will help you in learning information. Just the FAQ questions are helpful.

Again welcome and we are glad you found this site. Knowing as much as posiible is important.

Take care,
Dinah

Dinah,
How are you doing? I haven't chatted with you in quite a while and would like to hear from you. Feel free to email me at [email protected] and tell me how things are going.

Danny G.