Hi everyone I am new dx and almost halfway in to 30 RAD.. I am now having the problems with the mouth ulcers and soreness/burning of tongue. I'm frustrated because I asked dr today about different things I have read and I was basically told this is how it will be and it will get worse and let them know when I want the pain patch. I do have the magic mouthwash and I'm rinsing with salt/baking soda. Help! Any suggestions? I'm really starting to question my decision on treatment.
CathyG

Hi Woodstockga,

You are no longer in the reality that you entered from, and now you are in the reality of cancer treatment. The treatment is often quite brutal, but it is what it is, and that is your reality. The sooner you recognize this, the easier it will become, because simply it is your new normal.

If you cling to some thing (such as your old reality) that no longer exists, you will be apt to fail to notice what is good about your life. Look hard, you will find many things that are good.

This particular set of irritations, painful though they may prove to be, will pass.

Let me repeat that, this will pass. Do not get into the "woe is me's" at all costs, just recognize that it is painful as hell and irritating as my message likely is, but it will pass all the same.

Keep a clear mind, drive such negative thoughts mercilessly away. Your mind is the one thing that no one can take from you without also taking your life, so strike a blow against your nemisis by taking control of your mind!

Regardless of what you think about my tone, I write only because I have nothing but the very best wishes for your successful passage through this hellish passage!

Bart

Hi Bart,
No problem with the tone and believe me I do understand about attitude. Lol
My biggest issue is having my questions brushed away regarding help with the mouth ulcers etc with something other than just pain meds. I have the PEG already placed for when I need it and have taken pain meds as needed so I do get the reality and I do understand that this will get better with time after RAD over. But has anyone used honey or glutamine and had it help? Not asking for a miracle...just being alive is miracle enough....just someone to listen..
CathyG

You're a very tough young lady Cathy, and your head is screwed on tight! You'll get through this with flying colors.

Well my work here is done for now; UP, Up and away...

Hey Bart,
Thank you so much! Everything I've read on here says you are the one with the real answers and the person that knows how to pick oneself off the ground and keep on living!
Are questions about tips on the ulcers and such allowed on here? JW..
Keep on keepin' on!
CathyG

Welcome, CathyG

Mucositis is very common, almost guaranteed, and so is oral thrush, basically an out of control yeast infection (candida). The rinsing will help, but if the salt burns just use the baking soda. Some radiation centers spray your mouth, probably saline solution, every day, which helped me a lot, and was prescribed NuetraSal, supersaturated calcium phosphate rinse, which is by prescription, and helps with dry mouth and mucocitis.

Stay away from foods that are acidic, spicy, sharp textured, too hot, as not to irritate the mouth.

Some have used Manuka honey and swear by it. I never used it, but heard organic honey is just as good. Glutamine powder helps healing, and can be used to rinse with and or swallow. Some centers give out Juven, from the makers of Ensure (Abbott) which is a specialized powder containing Glutamine for tissue building, and has better flavor (fruit punch) than other Glutamine powders I tasted.

Another was aloe Vera juice, rinsing and or swallowing. I used the 100% distilled type found in health foods stores for healing the mucosal lining, not the sugar aloe Vera drinks. It can also be a little laxative if too much is used, but with pain meds, sometimes that is desirable.

I hope this helps.

Thank you PaulB!
That information helps quite a bit! I just started using the honey and just got the glutamine powder this past weekend after reading about it and when I mentioned it to my dr today he looked at me as if I was nuts....
No spraying of the mouth prior to tx
Have a great evening!
CathyG

YW. It's usually after radiation they spray your mouth. You may be able to get similar results using a Waterpic, and putting saline solution in the resevior, but I don't know if it's irrigational saline or another type, but check with the doctors.

Adequate protein also helps with healing. Some say 1/2 gram protein for every poud of weight, some say 1 gram for everyone protein for a pound of weight. Ask your medical team and or dietician, nutritionist.

Good luck.

Welcome to OCF! You will find lots of help here with correct medical advice and moral support.

Since you are at almost the half way point, hopefully you are still feeling pretty good. For the mouth sores, thats very common and there isnt much that can be done except rinse several times per day with 1 tsp baking soda, 1 tsp salt and 16 oz warm water. this will help keep the ph balance in your mouth stabilized. Use the magic mouthwash to help numb your mouth for a few minutes. A waterpik used on its lowest setting with warm water and a cap-fulls of non alcohol mouthwash in it helps to keep your mouth extra clean.

Watch closely your intake. this is what will make things easier or harder depending on how well you do with hitting your daily minimums. Every single day from now until at the very least you hit your 1 year post rads anniversary you should push to get the minimums in. That means at least 2500 calories and 48-64 oz of water daily. I know it sounds like alot but its not at all. If you are losing weight or active your calories need to be even higher like 3000 or 3500. After your finish treatments, then ask your doc or dietician about adding some high protein whey powder to your diet. The increased protein helps to speed your healing.

Best wishes!

Hi, Cathy. I know what you mean by frustrated. I finished 6 weeks ago and found the radiation oncologist a bit too down to earth for my liking. She questioned me and wrote down my answers, observed my mouth and wrote a description like "Grade 2 mucositis". When I asked a question outside her field (I was biting on my flap) she'd just shrug. I think she saw a lot of people in that clinic and had become ho-um about the process, seeing her role as one who observed the process to ensure the wheels didn't fall off:) I seemed to get more good advice from the dental team whom I also saw once a week. And this site is superb. Following Christine's advice on nutrition ensured I didn't lose too much weight even when my taste buds went. You probably have that in front of you. It's not nice but it too passes. I can taste lots of stuff now!

Wishing you all the best.