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MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Bill and everyone,
Yesterday I tried something that I didn't think I could eat, and guess what?...I couldn't eat it! It was a grilled cheese sandwich from Sonic. The bread and cheese just stuck to my teeth like Play Doh clay. I became so discouraged and cried all day. Will this ever get better? I am only 7 1/2 months out of treatments but I feel like I should be making better progress. Did any of you experience anything similar when you tried eating new things? I am now back to eating bean soups and Salisbury steak TV dinners. I'm getting so sick of eating the same old things. Did any of you experience this kind of plateau? Hope to hear from you guys.

ljoy's picture
ljoy
Posts: 85
Joined: Dec 2007

I'm two and a half years out of treatment for tonsil cancer. 39 radiation treatments and three rounds of chemo. It took awhile for the siliva to start coming back. My doctor prescribed Evoxac 30 mg which has really helped. Not perfect, but I really notice if I don't take it daily. I still dunk grilled cheeze in tomato soup to get the moisture necessary to eat it. I eat a lot of pasta, cassroles, etc, They have enough moisture to make it easy to eat. I do eat steak with mushroom sauce but not much bread unless dunked in something.

It is a tough road but hopefully you will continue to improve. Unfortunately you may need to alter your diet for quite some time.

Hope this helps.

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Thanks for the reply. You're right, it is a tough road. Is your saliva working better now? How many months post tx did you start noticing your saliva coming back? I tried mac and cheese the other day and the pasta stuck to my teeth as well. Sooooo discouraging. Maybe I'm just not ready for that kind of thing yet.

ljoy's picture
ljoy
Posts: 85
Joined: Dec 2007

My taste came back first. It only took about three months. My siliva has continued to improve although slowly. They prescribe the drug I sent you right after I completed treatment. Cheese is sticky. I use the pasta packages such as 4 cheese bow tie, etc. We had beef ribs with egg noodles and brown gravy last night. Small bites of beef with the gravy makes it work for me. Just guessing but I would say my siliva is 50-60%. I also chew Biotene gum during the day which seems to help. Always have a bottle of water with me. I no longer wake up with a complete dry mouth. I have fairly good siliva throughout the day.

Hang in there, it should get better with time.

nncy01
Posts: 1
Joined: Feb 2008

My husband is about to start treatment for tonsil cancer, which spread to the lymph node. We still need the pet scan to determine the stage, but the doctors think it is stage 4. Treatment will be 7 weeks of daily radiation and 3 rounds of chemo. He plans to return to work about a month after treatment. Is that at all realistic?

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I too had tonsil cancer and was no where near ready to return to work a month out of treatments. Everyone heals differently though.

ljoy's picture
ljoy
Posts: 85
Joined: Dec 2007

As the other reply indicated, everyone is different but I would doubt he will be ready in a month. I had 39 radiation and 3 rounds of chemo for Tonsil cacer as well. I started back to work part time after three months. The important thing is to do what ever it takes to get well. Work is not the priority.

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

I had IMRT radiation and 6 treatments with Cisplatin and I returned to work about 8 weeks after treatment ended. I was very tired though and would sometimes fall asleep at my desk (I told my co-workers that could happen and they were very understanding). I worked myself hard to eat all food by mouth for the last couple of weeks so that they would remove my PEG tube. I also had to work hard to get off the pain killers. I had strong withdrawl symptoms from oxycodone.

livinontheedge's picture
livinontheedge
Posts: 9
Joined: Jan 2008

i am 3 months post-radiation for cancer on false vocal cord....swallowing is very painful and nothing tastes good,but i force myself to try to eat a wide variety of things. it makes me sad sometimes because i used to LOVE to cook...and eat too...and now i only do so it to help myself heal...most things taste like dust to me but i seem to be getting some tastebuds back...its getting better...keep your chin up and God Bless

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Hi Marie!

Don't you just hate that! Just after you have a good week with eating and swallowing, something like that can really take the wind out of your sails! Let me share a little trick on grilled cheese(a favorite of mine) If I eat something a bit greasy or almost any salad dressing has enough oil in it to coat your teeth to help keep the cheese from sticking to them. OK, it's not perfect but it does help a bit. I still have small setbacks like that from time to time but it makes me that much more determined (hard headed) to make it work.

All my best,
BILL

devildawg
Posts: 16
Joined: Jun 2005

I feel your pain, I was diagnosed with Nasopharyngeal Carcinoma. I had to learn how to eat all over again, for 10 months I lived by drinking boost and ensure, I could not swallow anything solid.Over time things have changed drastically and I am now able to eat a variety of different foods, mostly soft foods,pasta, mashed potatoes,etc. I have found that when I eat, after every bite I take a drink of milk or water,I prefer milk though. The milk and water are used like saliva to break down the food. I have no saliva glands at all, so I constatly have to have a drink on hand. It does take so much time but things eventually get easier, but things will never be(at least for me) the way they were.I feel your frustration, but I would bet with sometime and patience things will get better.

Christmas
Posts: 91
Joined: May 2005

Yes, it will get better! I really can't remember how long it took before I could enjoy "normal" food again. You will get to enjoy your favorite foods again or you'll soon forget because you'll find new favorite foods.
Be patient.

CGlaze
Posts: 1
Joined: Feb 2008

Hello MLC53,

Its been 11 years since I went through radiation treatment for my right tonsil. I had a T4 tumor and the cancer had spread to two of my lymph nodes. I had radiation therapy twice a day for 6 weeks on both sides of my face and on the front and back of my neck all the way below my collar bone. At the end of my radiation I had no functioning saliva glands and I could barely swallow past the mucus in my throat but I kept trying. I used a lot of magic mouthwash to numb the pain. Three months after radiation therapy I had a neck disection and I thought things would finally get better. I didn't have a voice so I would have my husband call the other people who went through treatment at the same time I did and see if they were getting along any better than me because I still couldn't speak or eat. My doctors had told me that I should be able to eat again within a few months after radiation therapy, but that did not happen. I consumed only liquids for six months. I too struggled to eat for a long time. Unfortunately for me I had radiation complications that led to nacrosis in the right side of neck which created a fistula and I ended up with a peg (feeding tube) in my stomach for a another year. It was the best thing that could have happened to me at the time because if the abscess had not of opened in my neck preventing me from swallowing I would have most likely starved to death while trying to force myself to swallow. I can tell you that it will get better, it took me over a year before I taught myself to eat comfortably again but I learned to take a sip of water along with every bite of food to replace the function of my saliva glands that were damaged by the radiation, this took practice...I inhaled the water while trying to chew and choked a lot, but I learned to take small bites that I could chew more easily and the choking doesn't happen very often now. Without the assistance of water or some other form of liquid I cannot swallow food. I can eat almost anything I want with the exception of tough meat, things that are really chewy and hard candy because it won't dissolve. The easiest things for me to eat are things that are crispy like potatoe chips, moist foods like meat loaf, vegetables and salads. I can eat tender cuts of meat like prime rib and tenderloin. I eat grilled cheese sandwiches but I normally dip them in soup to make them easier to chew up and swallow. I hope this helps, I know how you feel because I felt I would never get better.........YOU WILL!!!!!

stevelfun's picture
stevelfun
Posts: 17
Joined: Dec 2007

Yup..... Sticky geewy things are tough. However, LOTS of water does help.

I remember very clearly - I was in the hospital after my surgery and was just allowed to eat 'soft' foods. I got a yogurt with blueberries in it from cafe in the hospital. A blue berry got 'stuck' in my mouth and I couldn't 'reach' it with my 'new' tongue. I got really discouraged and tears welled up in my eyes.

I suppose that somethings will never get easy to eat. However, I do try them. Lots and lots of water.

I miss eating peanut butter. LOL

Other things that I used to eat are difficult as well from the standpoint of being able to manipulate the item to chew it adequately and the lack of saliva compounds the difficulty in swallowing it as well. Eating an apple.

Best to all.

I eat most things that I used to. One of my faves - steak dinner with a caesar salad. I go slow - cut the steak up small - chew carefully - lots of water. It probably takes me twice as long to eat than it did before, but it is all good.

Hang tough - don't get too discouraged - and LOTS AND LOTS of water.

People - I know it is tough and very discouraging at times, but I look at the bright side (as I am sure you have as well) - yeah, we have had it worse than some - but we have it better than many. I can speak and can still taste - perhaps limited, but it is there. Remember during treatments what is was like when you couldn't taste anything???? Ice cream.... BLEEEAAAHH! Cold, slimy, Crisco is how I described it. Coffee - nothing.

For now, I am doin' well. AND!!! Looking at the green side of the grass. ;-)

Thoughts and prayers to all. Hang tough!!

jtjones56's picture
jtjones56
Posts: 21
Joined: Apr 2008

I could only drink my meals for the first 3-5 months which was frustrating because I was so hungry. Then around 6 months I was able to progress to some more foods. Now I am 8 months out of treatments and am able to eat a lot more foods. They do have to be relatively soft and I still have difficulty with meat and definately bread. Bread does stick to my throat.
The good news is I am able to eat some salads again and now I have gained 10 pounds in 3 months!!!!

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Provided I have enough liquids (other than POP, YUK!) I can eat pretty much anything. My problem is that sweet is so diminished that I tend to overcompensate with some sweet things and eat too much to try and get more taste. This has led to me gaining 25 pounds!! Yikes! I still weigh less than I did when this all started but I am overweight again.

OK, back on topic. All sandwiches go down better with soup. Just get used to ordering a 'half sandwich and soup' and you will be good! :) I can eat any salad as the moisture in the salad really helps it go down. Yogurts (they don't need to be sweetened as I can't taste that anyway), oatmeal, grits, mashed potatoes, baked potatoes with lots of butter and sour cream, omelettes with salsa and sour cream, most Mexican and Asian food so long as it is mild (they seem to be moister, except for rice! be careful not to inhale rice!!) and baked fish.

I tend to avoid steaks, chicken/turkey breast, and pork chops (although breakfast sausage is OK). Most meats just seem to have unappealing texture to me now. All breads other than tortillas are very hard to swallow. Also, fruits like apples that have a pulp are hard as once the juice is chewed out the pulp is hard to swallow.

Wow! I like to talk about food! lol Enough for now...

shirley hill
Posts: 1
Joined: Dec 2009

I'm writing for a dear friend and co-worker of my husband, Kelly. His name is Don and he has been in treatment for cancer of the tonsils for 8 month's. Now that he has had the operation to remove the cancer and then the treatment of chemo therapy and radiation, he is unable to eat food properly because of the damage to his silivary glands. He has some function in the upper glands but none in the lower part of his mouth. He has lost 25 lbs. and is so weak from muscle loss and the inability to eat. He had his feeding tube removed 2 weeks ago and has lost 10 pounds since then. he is able to get only ice cream, yogurt and some soup down. What can he do to get his strength back and is their a way to make his glands make siliva again. We want to help him so much and feel helpless. If you have some encouraging and helpful hints, we would sure appreciate hearing from you. His employer is holding his job for him and we would love with all our hearts to see him return to work and a normal life after this cancer ordeal. Please write to me and I will pass your testimonials on to Don. His last xray scan showed no sign of cancer. We are so hopeful that if we could just get some food in him, his physical problems would take care of themselves and he would be on his way to the normal life he once enjoyed.
Thank you all in advance for any advise that you can give me. Shirley Hill

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Shirley- why would your friend get the feeding tube removed if he isn't eating right? I've had mine in since January, and know I will have it at least 14 months- though I haven't had to use it since April. Did the Dr. tell him he has to get it out? I do not understand this. What saliva I have is a thick foam, and that ain't right, but it is what it is. The only surgery I had was a 5-place biopsy, which involved cutting my throat by the upper of the two neck tumors, but only a biopsy sample was taken from the tumor, so your friend is likely in a little bit of a different boat than I was in. Still, I am now eating most foods, and especially like chef-type salads w/French dressing, but can eat most anything- except garlic.
He has to get the calories- drink ENSURE and/or BOOST. For me, my chemo Dietician advised I get 2100 calories/day. The calorie content is listed on the little drink bottles. There's only 4 flavors, but we're not talking about taste- we are talking about NECESSITY.
And I think you should really encourage your friend to see his Doctors about his issues.
kcass
KEEP US INFORMED

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Shirly, I too wonder why Don had his PEG removed if he is having such difficulty eating. This may need to be revised by his Drs. If he has the pain and eating difficulties, he will be restricted to what he can managed which by the sounds of if is soups etc. I am of the school who believe Sugars are BAD for him (ie Ice cream) as Cancer thrives on processed sugars.

If he can chew soft foods then he should try to get vital greens such as Broccoli, Carrots, Cabbage and just have with soup or water to assist with the chewing because of the Saliva problems. He needs calories. He also needs protein so some research into nutrition and diet is required so he gets enough of the rights stuff. Tofu is a good protein source and easy to prepare and eat.

This web forum is full of stuff about Saliva production (or lack of) as I too have been doing it tough without Saliva. I will be seeking Acupuncture shortly to see if that can help me. There are are many other posts on this site mentioning some prescription drugs which may help. Everyone responds differently. As for muscle loss, I have been taking Glutamine Powder every day which helps to heal the mucosa (All mouth and digestive tract tissue, and it also has a catabolic effects to prevent the body consuming muscle tissue.

In his state you also need to check for signs of depression and if there any at all, seek help straight away as that can have a major effect on his recovery. I know first hand.

Wishing Don all the best.

Scambuster

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Scambuster- thank you. You have given me a starting point to what may be the most trying of obstacles on my road of recovery.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Kent, I feel your frustration with the lack of answers from the Doctors. I have been using Conventional Medicine AND Naturopathy since I was 20 (So 26 years) and my brother is a Naturopath. What I find is Doctors rely on their same old pattern of diagnosis and prescribe a drug. This is not always the best way around things as 1. They often don't know why or what and 2. they only have prescription medicines as a solution. The medicines usually have side effects which they will again treat with another prescription.

I would strongly recommend you find a good Naturopath and use them along with your regular Doctors. Naturopaths recognize they are often a 'last resort' and they get a myriad of 'Too Hard Basket' cases that conventional medicine cannot help. They are aware also that their treatment must not interfere with what ever you may be doing with your main Oncologist. The irony of all is crazy but most Naturopaths will accommodate your need to stay with conventional meds. Try to find one that has dealt with post RT/ Chemo people.

I have found mine immediately recognized my problems and they also explained why i.e. my mucosa was fried by radiation hence I was given Glutamine Powder which also has help save my muscle tissue from wasting away (I lost ~20kgs = 44lbs). They also helped with some emotional issues as well as giving me a host of supplements including Omega 3.6.9 Complexes, Vit B Complex, Zinc, Vitamin C, Cordyceps, Shitake, Q10 CoEnzymes, Acidophilus, Selenium, vital greens, pro-biotics +++++++ all stuff the Oncologists have never mentioned or dismiss as witchcraft.

These are all essential supplements to aid healing and recovery by giving the body what it really needs. THe only thing the Oncologist ever told me to eat was Icecream !! Your body has had the living crap beaten out of it, and all the Doctors can do is give you medication to treat the 'Symptom' NOT the cause. Naturopathy will find the 'cause' and treat you that way.

Your Naturopath will almost definitely also use Homeopathic remedies which can do wonders so be open to all this if and I hope when you start down this path. These are usually tiny pills or drops you take that work at a molecular level. I have used them for years with great results and will shortly start some to try and revitalize my damaged Salivary Glands as I am suffering badly now from the Dry Mouth.

Another thing I did was a week long course of Vitamin B Complex and Vitamin C IM Injections. While immediate effects were hard to gauge, everyone around me commented that I looked much better. I will start another round soon.

Read ANY 'good' book on diet and nutrition and you will see that nutrition is essential for a proper recovery and that is also the angle your Naturopath will take regarding diet, nutrition and supplements and thus helping you to get out of the Pharmaceutical merry go round.

You obviously need the Glutamine Powder and possibly a host of other vitamins and minerals that will remedy your loss of tissue and mouth sores. I have a friend now 2 years out and having similar issues as you. I found her a Naturopath, she was booked in and then her Surgeon talked her out of the appointment ! She still suffers and they still have no answers. That is the mind set of conventional Doctors.

I really hope you give this a go Kent and manage to find a good Naturopath and start down the road of 'Complimentary Medicine'. I am still suffering lots of effects from the treatment and will continue to do so for however long but I believe I am far better off having used Naturopaths to help my recovery.

Best Regds
Scambuster

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

All along I have been gleaning supplement info from one source and another, and I was so excited to see your list! Although we have not visited a naturopath doc, I have been giving my husband many from your supplements list, so feels great that I have been doing it right! He takes Glutamine Powder, Omega 3.6.9 Complexes, a multi-vitamin, Zinc, Vitamin C powder, a 5 mushroom complex, Acidophilus, vital greens, black raspberry powder, tumeric powder, and pro-biotics. I add all these to a super shake that I put through his peg tube.

Something to note for new comers who are in treatment, my husband's doc said that during chemo and radiation, DO NOT take anti-oxidents, as they will nourish the struggling cancer cells too much. Two weeks after treatment is over, then add the anti-oxidents back into the patient, as then they will have the anti-cancer fighting ability that they are known for. I asked about whether we should drop blueberries and other anti-oxident foods out of his diet during treatment, and they said as long as it is a real food, then it is ok to eat, but supplements provide higher levels of anti-oxident, and those were to be put on hold instead.

Karen

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