CancerCompass message board discussion started by Stephaniewhite on 4/24/2007 http://www.cancercompass.com/message-board/message/all,11558,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad is the most important person in the world to me other than my fiancee'. He just finished his radiation treatment on his neck. His throat is the worst it has been so far. Sometimes he has trouble even drinking water because the inside of his throat is so raw, and there is so much phlim built up. He has been able to only get down water, Boost, Ensure, and asparagus and some creamy soups. He  has lost so much weight I am really concerned about his nutrition. I have tried to think of anything I can, any way that I can go buy and prepare something healthy that he can get down. Tonight I am going to go buy turnip greens or collard greens and cook them till they're real soft with a smoked turkey leg or something. I figured if he is unable to eat the greens he could drink the "pot liquor" and get nutrients from that at least. I've been trying to think of stuff that would taste good that maybe I could buy and cook and then blend. I have to be careful though because even green tea at room temp. he said feels like fire in his throat. I've got to think of stuff that is creamy and base-rich that will go down in a soothing fashion that can be served neither hot nor cold. Anything cold burns. Any creative ideas from anyone who has had experience with this with maybe a little more culinary experience than I have would be greatly appreciated. By the way his taste buds are almost gone. They are supposed to come back. But I was thinking of blending canned beets and trying to think of some way to blend cooked liver. The combination of the two has successfully raised his red blood cell count from 6 all the way back up to normal in the past. But because of his throat he hasn't been able to eat them and I'm real concerned about is red blood cell count since he;\'s had problems with it getting low before. Please help. We really need support. Thank you. Stephaniewhite Tue, 24 Apr 2007 00:00:00 GMT My husband had tonsil Ca 4 yrs ago and underwent surgery and radiation tx.  Close to the end of radiation he was unable to eat or drink anything, even water or boost.  I am a dental hygienist and I knew all the right soothing gargles and rinses for throat pain but nothing helped.  Jim lost over 60 lbs and he is a solid man.  Any way we finally made a decision to have a temporary stomach tube placed and he subsisted on ensureHN for several months.  This gave him some energy and stopped the wasting away.  I am happy to say he is 4 yrs cancer free now, working full time and leading a fairly normal life.  I must say the swallowing issues remain even today and there are many foods that Jim just cannot swallow but he's learned to use milk shakes, smoothies, mashed potatoes to assist in swallowing foods that would be difficult otherwise.  Hang in there, pray continously, for this is God's will, and look forward with hope to your Dad's future.  Remember this will pass and is temporary. Jackyrmtn Thu, 26 Apr 2007 00:00:00 GMT  On 4/24/2007 Stephaniewhite wrote:My dad is the most important person in the world to me other than my fiancee'. He just finished his radiation treatment on his neck. His throat is the worst it has been so far. Sometimes he has trouble even drinking water because the inside of his throat is so raw, and there is so much phlim built up. He has been able to only get down water, Boost, Ensure, and asparagus and some creamy soups. He  has lost so much weight I am really concerned about his nutrition. I have tried to think of anything I can, any way that I can go buy and prepare something healthy that he can get down. Tonight I am going to go buy turnip greens or collard greens and cook them till they're real soft with a smoked turkey leg or something. I figured if he is unable to eat the greens he could drink the "pot liquor" and get nutrients from that at least. I've been trying to think of stuff that would taste good that maybe I could buy and cook and then blend. I have to be careful though because even green tea at room temp. he said feels like fire in his throat. I've got to think of stuff that is creamy and base-rich that will go down in a soothing fashion that can be served neither hot nor cold. Anything cold burns. Any creative ideas from anyone who has had experience with this with maybe a little more culinary experience than I have would be greatly appreciated. By the way his taste buds are almost gone. They are supposed to come back. But I was thinking of blending canned beets and trying to think of some way to blend cooked liver. The combination of the two has successfully raised his red blood cell count from 6 all the way back up to normal in the past. But because of his throat he hasn't been able to eat them and I'm real concerned about is red blood cell count since he;\'s had problems with it getting low before. Please help. We really need support. Thank you.I know what you're going through!  I spent hours wandering the grocery store aisles looking for something healthy that my husband could eat and wanted to eat.  I have a recipe for a wonderful vegetable broth to use as a base for soups, which I can send you tomorrow.  We found that as my husband's taste buds changed and his throat was sore, the only water that he wanted to drink was Coconut Water.  It was not  coconut milk. My husband said the coconut water was easier to swallow than regular water.  I bought it at New Season's health food store.  It came in small cartons with a mostly green label...I'll find the brand name for you.  It's been almost two years and I can't remember.  I'll get you the recipe & info.  Optomist Thu, 26 Apr 2007 00:00:00 GMT Dear Stephanie,My husband had tonsil cancer last February and had a neck disection and 6 weeks of radiation.  He lost around 40 pounds and lost taste buds as well as salivary glands.  He is doing so much better now (last radiation was May 8, 06.  He almost had a feeding tube inserted, but somehow avoided it.  Have the doctors suggested that for your Dad?  We found something at Stanford called Skandi shakes.  With 8 oz of whole milk added to packet, it is 600 calories and filled with much needed nutrients.  We added protein powder, ice cream, berries (frozen) and got each drink (blended) up to almost 900 or more calories.  He lived on these for months.  If cold things burn his throat, you could leave out the ice cream and maybe add ensure along with the milk.  You can have any pharmacy order these for you, they come in vanilla, strawberry and chocolate.  Albertsons pharmacy was the cheapest and had a quick turn around. The nutritionist at the hospital turned us on to these shakes (come in 4 powder packets per box).  Having no taste buds and no appetite as well as a sore throat makes it so hard to get anything down.  Has the doctor suggested a feeding tube? Best of luck to you and your Dad, he is lucky to have such a caring daughter.  hang in there, it is a tough treatment but things will hopefully improve with time after radiation is done. The plhegm will start to get thinner and be easier to deal with.  Maybe sleep propped up with pillows to help with that.  My husband's taste buds are slowly repairing but his appetite is definitely back and he is starting to gain weight back. We had a friend who was given a topical ointment of some kind orally before he ate to numb his throat.  I can try to find out the name of that if you want.My husband and I went to Spain 2 months after his last treatment (he is 59) to see our daughter.  It was difficult to travel and the food was a bit of a challenge (we brought scandishakes and tried to explain in Spanish to the people at starbucks how to blend  it). The trip helped him start to get better, walking more and eating without an appetite or taste.  10 months after treatment he just went on a bike ride in Costa Rica and is doing very well.  We'll pray for your Dad and hope his treatment is over soon.Hang in there.Marsha SweeneyOn 4/24/2007 Stephaniewhite wrote:My dad is the most important person in the world to me other than my fiancee'. He just finished his radiation treatment on his neck. His throat is the worst it has been so far. Sometimes he has trouble even drinking water because the inside of his throat is so raw, and there is so much phlim built up. He has been able to only get down water, Boost, Ensure, and asparagus and some creamy soups. He  has lost so much weight I am really concerned about his nutrition. I have tried to think of anything I can, any way that I can go buy and prepare something healthy that he can get down. Tonight I am going to go buy turnip greens or collard greens and cook them till they're real soft with a smoked turkey leg or something. I figured if he is unable to eat the greens he could drink the "pot liquor" and get nutrients from that at least. I've been trying to think of stuff that would taste good that maybe I could buy and cook and then blend. I have to be careful though because even green tea at room temp. he said feels like fire in his throat. I've got to think of stuff that is creamy and base-rich that will go down in a soothing fashion that can be served neither hot nor cold. Anything cold burns. Any creative ideas from anyone who has had experience with this with maybe a little more culinary experience than I have would be greatly appreciated. By the way his taste buds are almost gone. They are supposed to come back. But I was thinking of blending canned beets and trying to think of some way to blend cooked liver. The combination of the two has successfully raised his red blood cell count from 6 all the way back up to normal in the past. But because of his throat he hasn't been able to eat them and I'm real concerned about is red blood cell count since he;\'s had problems with it getting low before. Please help. We really need support. Thank you.  Marsha Lee Thu, 26 Apr 2007 00:00:00 GMT I went through radiation and chemo for throat cancer on the lower back part of my tongue last year. I developed every mouth sore possible to go along with the burned up throat. I became dehydrated due to not being able to swallow anything at all. I had a stomach tube put in and lived on a prescription nutrition drink called Jevity for about 3 months. It saved me. When I first started eating or drinking anything I discovered that water was very difficult to swallow as it is so thin. Buttermilk worked well for me to help get food down, plus I didn't choke on it so much since it is much thicker. I finished my last treatment in March of 2006 and my sweet taste buds still aren't back fully. I also had the cancer in my lymph nodes on the left side and my saliva glands on that side were burned up and thus I have very little saliva. I use Biotene mouthwash all the time now and carry a small bottle all the time to rinse with to help with the dry mouth. During treatment I used a pink liquid that was made up of Maalox, benedril, and some numbing agent(possibly lidocaine) or something like that that was supposed to make the throat numb enough to swallow, but mine was too bad although it helped me be able to talk better for a while after use and rest better. I slept in recliner for several months. Nothing will probably taste good for a while. Scrambled eggs are a good source of protein and can sometimes be swallowed easier than other things. Malto Meal worked fairly well for me when I was able to begin eating a few things also. I hope some of this helps. It is a horrible thing to have to go through, but I am starting to feel better finally after about 13 months. Doc said it might take a year and a half. I had just turned 60 when diagnosed due to a swollen lymph node. Keep the faith and may God bless. Roy in Illinois Feelndown Thu, 26 Apr 2007 00:00:00 GMT Hi Stephanie, this is Bonnie.  I found the information about the coconut water that was such a blessing for my husband.  Name is Harvest Bay Coconut Water; it is a product of Brazil and is distributed by Hershey Import Co., 96 Executive Ave., Edison NJ 08817.  However, I googled "Harvest Bay Coconut Water" and the second entry took me to www.calibex.com, where you can order it on line if there is none in your local market.  Since my husband drank it, there are 2 new flavors...apple and acai berry.  My daughter tells me that the acai is not like what we think of as "berry" and is not at all sour or astringent.  Says it reminds her of the texture of avacado and has very little taste, but is very nutritious.  The acai berry grows in the rain forests.The broth recipe I spoke of is quite long; maybe you'd rather have the whole book...it has many highly nutritious and delicious soups.  Title is "One Bite at a Time", Nourishing Recipes for People with Cancer, Survivors and their Caregivers.  Author is Rebecca Katz, published by Celestial Arts, PO Box 7123, Berkeley, CA  94707.  If you have trouble getting the book or just don't want to wait, let me know and I'll send the recipe for Magic Mineral Broth.  Hang in there.  We're all pulling for your dad and you.  Remember to take care of yourself. Optomist Fri, 27 Apr 2007 00:00:00 GMT I also had radiation to my throat.  If your Dad is losing too much weight, he may want to consider the insertion of a feeding tube.  This was the standard protocol for my treatment and I appreciated having it when my throat was to raw which was a long time.  It's great that your Dad can drink water etc.  This is very important even if it is painful in order to keep his swallowing capabilities.  I didn't and regret not doing so as I had to learn all over again how to swallow.  I also  swished, gargled and if I could swallow glutamine (disolved in water) which helped.  To add weight, I used Scandi Shake (1-800-472-2634).  It is a powder that you mix with 8 ounces of milk.  It provides 600 calories per 8 ounces and tastes very good.  It comes in chocolate which is my favorite, strawberry and vanella.  I think they will send you one can for free to try.    Also, you mix Garden of Life Perfect Food Original Super Green Formula with their Fruits of Life formula with water to get in fruits and vegetables.  The green formula doesn't taste good but if your Dad doesn't have much taste left, he may not mind.  I mix it with Garden of Life Super Seed and vanella Whey to Go Protein by Solgar for extra nutrition and better taste.  You may want to experiment and see what works for your Dad as I'm sure volume is a problem. You can also use Ultimate Meal(1-800-the-meal) which again you mix with water.These were suggestions given to me by a cancer nuitritionist which I found very helpful.  Good luck to you and your Dad.  If I can help further, let me know.  My prayers are with you and your Dad.  Michael Michael12 Fri, 27 Apr 2007 00:00:00 GMT Ohhhh----- Thank goodness I found you people!My DH is in the second week of treatment.  10 radiations down and 28 to go!   Food issues started this week and I need good ideas for things he can eat and drink.   I will look for the things you mentioned.  He is a man of slight stature and build and has been able to maintain his weight of 150 since diagnosis in March.I figured that was a miracle in itself since he had his tonsils removed, two sets of biopsies, a port installed, a colonoscopy, and a peg- tube put in!  Then he started chemo and radiation 4 days later!He has the "magic-mouthwash" also and thinks it works well.  We heard about an aloe based one from another head and neck patienr.  We are going to the health food store later this afternoon to buy some. Reading2kids Sat, 28 Apr 2007 00:00:00 GMT About your Dad's diet: When I was a teenager many years ago my Dad also battled throat cancer. My Mom also made "pot liquor" by combining several different types of greens for him to drink.. It kept him going & he survived for nine years..We now know that green foods have some anti- cancer nutrients..You might also try aloe vera juice ..it is very healing & suppose to help heal radiation burns..my husband was diagosned with stomach cancer in 2004 & we have had al lot of positive results using Noni juice..It was recommended to us by a 9 year cancer survivor..Keep the faith & don't give up..Thru God all things are possible!! Vitamizer Wed, 09 May 2007 00:00:00 GMT  On 4/26/2007 Feelndown wrote:I went through radiation and chemo for throat cancer on the lower back part of my tongue last year. I developed every mouth sore possible to go along with the burned up throat. I became dehydrated due to not being able to swallow anything at all. I had a stomach tube put in and lived on a prescription nutrition drink called Jevity for about 3 months. It saved me. When I first started eating or drinking anything I discovered that water was very difficult to swallow as it is so thin. Buttermilk worked well for me to help get food down, plus I didn't choke on it so much since it is much thicker. I finished my last treatment in March of 2006 and my sweet taste buds still aren't back fully. I also had the cancer in my lymph nodes on the left side and my saliva glands on that side were burned up and thus I have very little saliva. I use Biotene mouthwash all the time now and carry a small bottle all the time to rinse with to help with the dry mouth. During treatment I used a pink liquid that was made up of Maalox, benedril, and some numbing agent(possibly lidocaine) or something like that that was supposed to make the throat numb enough to swallow, but mine was too bad although it helped me be able to talk better for a while after use and rest better. I slept in recliner for several months. Nothing will probably taste good for a while. Scrambled eggs are a good source of protein and can sometimes be swallowed easier than other things. Malto Meal worked fairly well for me when I was able to begin eating a few things also. I hope some of this helps. It is a horrible thing to have to go through, but I am starting to feel better finally after about 13 months. Doc said it might take a year and a half. I had just turned 60 when diagnosed due to a swollen lymph node. Keep the faith and may God bless. Roy in IllinoisRoy hit it on the head. I had cancer cells in the back of my throat and the cancerous lymph nodes in my neck that required radical surgery to remove,  following that five weeks later by thirty five radiation treatments. The radiation started out easy enough, but the last few weeks were very uncomfortable. In the middle of a nice dinner out it all came to a halt, I couldn't eat or drink a thing and a week later I had the tube put in by my wifes insistance, it was easy to have installed and worked great while I was so uncomfortable and miserable for those couple of months.Five weeks after the last treatment I had the tube removed at the gastro's office where they basically just pulled it out, no big deal ,  three days later it's a small hole with a bandaid. I still have a soreish throat and crazy taste buds. Noodles taste great, soups with rice and all types of beef and ham has been good, chichen taste like styrofoam and sweet things are gastly. I love my sweets and junk/fast foods, but I'm on a eat better campaign once I determine what I like. I'm no doctor, but the doctors have told me to drink lime juice in water twice a day for the salivary glands and the oncology dentice told me to brush my tongue a few times a day to reinvigorate my reemerging taste buds. The spitting and phlegm will reduce down as well, I was spitting something out every fifteen seconds or more and now I only get the urge after a coughing spell every so ofter. I still have some stiffness in my neck near the surgery, but I go for some therpy to loosen that up and the rest has just been time to heal. Take it easy and look down the road. Nobody is asking me "how do I feel anymore" they are complaining about their own aches and pains. Jeff Jeffrey Shef Tue, 22 May 2007 00:00:00 GMT My husband had 28 Radiation treatments for Throat Cancer in Nov and Dec of 2006-he received one a day Mon to Fri. He developed swallowing problems about half way through and could only eat eggs and very soft things. I would also mash bananas for him. He couldn't have hot drinks either as that bothered him so I would only give him room temp tea and never coffee or soda. He used Aloe Vera-the 100% pure stuff I got at Walmart-on his neck many, many times a day, whevever he or I remembered to do it. Then it got real sore about 3/4 through the treatment and the drs gave him some salve but he was allergic to it and the skin sloughed off in great layers. It was terrible for him but then they gave him flamazine and that really helped.He also drank a 'Magic' wash about 4 times a day and that helped numb his throat. He went back to work 10 weeks after treatment and friends are always so surprised at how well he's doing. He still has a very husky voice which they say will gradually go away. The coughing he did so constantly at first because of the tickle in his throat from the radiation is much better now and he rarely has a fit of it.That is so much better as he would cough so much until he threw up and lost quite a bit of weight becasue of that when he was always a slight man to begin with.I pray your dad is doing better by this time. I have only today found this board and I think it is a great support for folks like ourselves. Hopefully you have a Support group in your town as we do as it's a great group to help in many ways in time of need. God bless. C Adjca1 Sun, 27 May 2007 00:00:00 GMT  On 4/24/2007 Stephaniewhite wrote:My dad is the most important person in the world to me other than my fiancee'. He just finished his radiation treatment on his neck. His throat is the worst it has been so far. Sometimes he has trouble even drinking water because the inside of his throat is so raw, and there is so much phlim built up. He has been able to only get down water, Boost, Ensure, and asparagus and some creamy soups. He  has lost so much weight I am really concerned about his nutrition. I have tried to think of anything I can, any way that I can go buy and prepare something healthy that he can get down. Tonight I am going to go buy turnip greens or collard greens and cook them till they're real soft with a smoked turkey leg or something. I figured if he is unable to eat the greens he could drink the "pot liquor" and get nutrients from that at least. I've been trying to think of stuff that would taste good that maybe I could buy and cook and then blend. I have to be careful though because even green tea at room temp. he said feels like fire in his throat. I've got to think of stuff that is creamy and base-rich that will go down in a soothing fashion that can be served neither hot nor cold. Anything cold burns. Any creative ideas from anyone who has had experience with this with maybe a little more culinary experience than I have would be greatly appreciated. By the way his taste buds are almost gone. They are supposed to come back. But I was thinking of blending canned beets and trying to think of some way to blend cooked liver. The combination of the two has successfully raised his red blood cell count from 6 all the way back up to normal in the past. But because of his throat he hasn't been able to eat them and I'm real concerned about is red blood cell count since he;\'s had problems with it getting low before. Please help. We really need support. Thank you. I also have a radiated throat, My wife has done the same your doing for your Dad. I find that on some days I can tolerate some foods,and on some days very little will go down. I find that,soups served cold go down,or just a little warm, also using apple sauce on various foods helps. I am determined to not lose weight, so I try a lot of combos, that sound weird to many. Hot tea, with cheerios, works for me, and helps keep the phlem down, warm instant oatmeal, watered down works.Stella dora. S cookies also work with warm tea or coffee. I have no taste buds left but find I have a keener sense of smell, so the aroma of food also helps. The juices from cooked meats, and gravies on white bread, work. Again I hope these suggestions help, keep positive, GOD bless, JoeT Zotos Fri, 08 Jun 2007 00:00:00 GMT  On 4/26/2007 Feelndown wrote:I went through radiation and chemo for throat cancer on the lower back part of my tongue last year. I developed every mouth sore possible to go along with the burned up throat. I became dehydrated due to not being able to swallow anything at all. I had a stomach tube put in and lived on a prescription nutrition drink called Jevity for about 3 months. It saved me. When I first started eating or drinking anything I discovered that water was very difficult to swallow as it is so thin. Buttermilk worked well for me to help get food down, plus I didn't choke on it so much since it is much thicker. I finished my last treatment in March of 2006 and my sweet taste buds still aren't back fully. I also had the cancer in my lymph nodes on the left side and my saliva glands on that side were burned up and thus I have very little saliva. I use Biotene mouthwash all the time now and carry a small bottle all the time to rinse with to help with the dry mouth. During treatment I used a pink liquid that was made up of Maalox, benedril, and some numbing agent(possibly lidocaine) or something like that that was supposed to make the throat numb enough to swallow, but mine was too bad although it helped me be able to talk better for a while after use and rest better. I slept in recliner for several months. Nothing will probably taste good for a while. Scrambled eggs are a good source of protein and can sometimes be swallowed easier than other things. Malto Meal worked fairly well for me when I was able to begin eating a few things also. I hope some of this helps. It is a horrible thing to have to go through, but I am starting to feel better finally after about 13 months. Doc said it might take a year and a half. I had just turned 60 when diagnosed due to a swollen lymph node. Keep the faith and may God My husband is 72 and is three years out of cancer treatment.  He had squaimous cell carcinoma stage 4 on his tongue and throat and lymph nodes.  He is so far cancer free.  He has little or no salvia and has been drinking liquid from novartis.  5 drinks  a day.  His stomach becomes very sick after drinking them and ends up in bed.  We are looking for a solution for food for him that will keep his weight on and maybe make him gain weight.  He cannot swallow much because he has no salvia.  Anyone out there have a solution? sparkle Sun, 13 Apr 2008 00:00:00 GMT My husband had his tonsils removed March of '07 and they found a malignant tumor. Three weeks later we almost lost him when another tumor that was on his carotid artery burst. Thanks to God, he was saved from bleeding to death.  He was unable to have the surgery at that time to remove the lymph nodes in the neck, due to the surgery to patch the carotid artery, so he was sent for radiation and chemotherapy all last summer. He had the port and the peg put in for feeding purposes. The last treatment was July, last summer, but my husband continues to exist only by blending oatmeal, milk, whey protein, Ensures, yogurts, fruit - they go in the blender and then in the feeding tube in his stomach. He has lost over 60 lbs. He was able to eat small amounts of pudding (the only thing he could tolerate by mouth) this past January, but in recent months, he has developed an ulser in his throat (from the radiation), and the mucus has increased as well as the pain. We need some help. It has been over a year with the feeding tube now, but my concern is that he is no longer making progress...I am scared and put this out as a means of finding any help.- Thank you and God bless you, Karen KarenandFrank Fri, 30 May 2008 00:00:00 GMT  On 4/13/2008 sparkle wrote: On 4/26/2007 Feelndown wrote:I went through radiation and chemo for throat cancer on the lower back part of my tongue last year. I developed every mouth sore possible to go along with the burned up throat. I became dehydrated due to not being able to swallow anything at all. I had a stomach tube put in and lived on a prescription nutrition drink called Jevity for about 3 months. It saved me. When I first started eating or drinking anything I discovered that water was very difficult to swallow as it is so thin. Buttermilk worked well for me to help get food down, plus I didn't choke on it so much since it is much thicker. I finished my last treatment in March of 2006 and my sweet taste buds still aren't back fully. I also had the cancer in my lymph nodes on the left side and my saliva glands on that side were burned up and thus I have very little saliva. I use Biotene mouthwash all the time now and carry a small bottle all the time to rinse with to help with the dry mouth. During treatment I used a pink liquid that was made up of Maalox, benedril, and some numbing agent(possibly lidocaine) or something like that that was supposed to make the throat numb enough to swallow, but mine was too bad although it helped me be able to talk better for a while after use and rest better. I slept in recliner for several months. Nothing will probably taste good for a while. Scrambled eggs are a good source of protein and can sometimes be swallowed easier than other things. Malto Meal worked fairly well for me when I was able to begin eating a few things also. I hope some of this helps. It is a horrible thing to have to go through, but I am starting to feel better finally after about 13 months. Doc said it might take a year and a half. I had just turned 60 when diagnosed due to a swollen lymph node. Keep the faith and may God My husband is 72 and is three years out of cancer treatment.  He had squaimous cell carcinoma stage 4 on his tongue and throat and lymph nodes.  He is so far cancer free.  He has little or no salvia and has been drinking liquid from novartis.  5 drinks  a day.  His stomach becomes very sick after drinking them and ends up in bed.  We are looking for a solution for food for him that will keep his weight on and maybe make him gain weight.  He cannot swallow much because he has no salvia.  Anyone out there have a solution?This is uncanny, your story is exactly the same as my husband even to the age.  He has had the same problem, our doctor is reccomending a diatician to blend foods with the proper calorie levels and nutrition.  Will let you know what happens sparkle Thu, 12 Jun 2008 00:00:00 GMT I lived on oatmeal and rootbeer floats.  I am 4 four yrs since I had the radiation and still have problems with my mouth.  Worst place to have radiation. GrammaKitty Thu, 12 Jun 2008 00:00:00 GMT I was given Isolep to hold in my mouth as long as possible and then swallow it.  It was developed by a Pharmacist that worked at Madigan Army Medical Center, where I get my treatment.  It is pink.  It worked some for me and I still use it.  My tongue gets sore from just about everything.  I can't eat sugary, salty, or spicy foods.  I didn't have any taste for about 8 months.  I lost 65 lbs.  I was grumpy and very unhappy.  I was told to suck on hard candy.  Sometime later, when I was well enough to go to the dentist, I noticed that the backs of my front teeth were brown.  It was all rotted from the hard candy.  She was able to save my teeth by building them up.  It is so much better with my front teeth.  I find regular toothpaste and mouthwash too much for me.  It's been 4 yrs.  I use Bio-tiene toothpaste.  I use Oasis mouthwash (a little) in a cup of water for rinsing and gargling.  I have always brushed my tongue and still do, even if it hurts.  I use Oral Balance at night to keep my mouth moist.  Since I use a CPAP for sleep apnea, I don't breathe through my mouth.  I know that makes a big difference.  Water helps the dryness for the time it is in your mouth, so I use Oasis Spray and I love it.  My mouth always tastes yucky but the Oasis Spray lasts longer and makes my mouth taste much better.  I have to use chapstick all the time.  If I talk for a little while, my mouth gets so dry my lips stick to my teeth.  My husband says I sound like someone who is deaf when I talk when I am that dry.  I take Cevimeline 3 times a day to help me make saliva.  I lost a gland to the tumor.  Since my immune system is so poor and I am so susceptible, I get infections.  Antibiotics give me thrush, so I use Nystatin for that.  I use the Isolep because it numbs it for a while.  The man who invented Isolep was named Pelosi, so he just spelled it backwards for a name.I get some oral balance gel to use during the day because it is thick and lasts a lot longer.  I wonder if my breathe smells as bad as my mouth tastes.  Long after the taste buds came back, I lost my sense of smell.  Now it is coming back but I only smell yucky stuff.  I still have trouble with some things not tasting like I remember.  When I  have animal crackers, I put one on my tongue and add a little water.  Then it just slides down my throat.  I eat biscuits and toast and cookies dunked in my hot tea.  Only way I can have a treat.  I drink 16 oz. a day of V-8 to get most of my veggies.  I can't have citrus at all.  Bananas and apples are the easiest.  I banana equals 2 servings of fruit.  1 apple equals 2 servings of fruit.  So I am getting most of my nutritional needs.  I drink Instant Breakfast, eat yogurt or cottage cheese or scrambled eggs and hot cereals.  I have trouble swallowing meat, so I get that in soup.  I can't have dry foods.  I fear things will never get any better for me.  I would be happy if the yucky taste in my mouth would go away. GrammaKitty Thu, 12 Jun 2008 00:00:00 GMT