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.
[quote=Woodstockga]?...has anyone used honey or glutamine and had it help? [/quote]
Yes to both. GlutaSolv mixed in water provides epithelial cell regrowth. Honey contains peroxide that works, but Manuka honey has additional healing properties.
Thank you all for the great information! I'm holding my own right now with the food but getting harder each day so I've ordered the formula for the PEG just so I can stay as healthy as possible to get through the 2nd half of this. Taste buds went pretty much by end of 1st week.
Is there any kind of dental paste that can be used on the inside of lower lip?
Christine...I know I'm getting the water in but basically living on oatmeal, chicken and rice soup and Ensure...I need to count the calories. So far weight loss has been 6lbs. Which I didn't need anyway...lol
My biggest issue now is dealing with the not eating because I love to eat and I love all kinds of food!
Blessed day to all!
Cathy
Hi Cathy,
My specialty (if you could call it such) is in dealing with Fear,Anxiety and Uncertainty. There are practical methods of training the mind to deal with these and I've had plenty of experience in learning and passing them on.
On the other hand, I've been blessed indeed, with a body that shakes off major trauma (like bleeding out completely to the point the triage doctor and the guy who gave me 18 pts of whole blood immediately to get my heart going again) and a Flail chest the year before, the result of a very high speed auto crash, 145 mph). The later had me declared DOA at the scene, and admitted to an army hospital DOA. The morgue had all the paperwork done, and my name on a drawer while they left me unattended on a gurney while working 4 1/2 hours on the driver.
I was back to unlimited duty less than 3 months after each of those events, even cleared to resume the duties of a paratrooper.
With all that; I have limited experience with sores and really don't have a clue here. Fortunately (for you,) many, MANY of our members are truly experts in this and are as free with their accumulated wisdom as anyone could possilby ask.
Please continue to ask, everyone's experience here is unique, there is no "one-size fits all" answer to any question, so it's now up to you to be persistent. If you do, you are very likely to hear an answer that fits you also!
My very best wishes for your finding the answer that YOU need!
Bart
Uptown..thank you for the answers on the honey and glutamine. I've started with the Manuka honey and rinsing with the glutamine powder dissolved in water. I can't seem to drink the water down. I've now gotten where I can mix the magic mouthwash with the viscous lidocaine to thin out the lidocaine..was having major gag reflex with the texture.
My Immerman angel got me started using Miaderm on my neck.
Was using Biotene until I read some older posts about the changes...
Bart you are truly a breath of fresh air and I think you probably know what I'm talking about...no bs with you and I love and appreciate that so very much.
Love to all!
CathyG
You're cooking with gas now, Cathy!
Make sure you don't use hot water with Manuka honey. It destroys the methylglyoxal which is the entire difference between organic honey and Manuka honey.
You're doing great!
Hey Uptown,
Using the Manuka Honey as is...I take 1 tsp in am before treatment and then another tsp after...
My BFF was just telling me she was doing research on her bees and found that the bee glue has been used ....any experience with that?
Anyone?
Lol
Goodnight and have a blessed one!
Love to all!
CathyG
Are you sure you need a teaspoon before and after? I worry a little about the sugar. What is the MGO rating of the stuff you use? The medical grade of 550 requires much less and it works much better for even thrush.
I don't know anyone that uses bee glue/propolis although I would think it works. Many here use aloe juice and it helps.
Good night!
Thanks for the link, Paul! I was going to add one and I burned my arm cooking some salmon. o.O
Thank you for link Paul... Can't see where is could possibly hurt.
Speaking of hurt how is your arm Uptown? I hope the salmon was good after all that ...
On the manuka honey the MGO is 250....
And I just ordered bee propolis from Durhams to see how it works on my lower lip inside...that is the worst place with the ulcers.
Love to all!
CathyG
Hi Alpaca,
I have been in the medical field for almost 30 years and I still am surprised when a physician doesn't listen to the patient. I can promise you I have over the years become so much more attentive to what is being said and felt by the patient because of being a patient myself!
I am encouraged by your response regarding taste....that went very fast and probably hit me harder than anything else.
Last night the side effect of hair in the range of the radiation falling out happened..lol
I now have a rat tail hahahahaha
Have a blessed day!
CathyG
Cathy, you might want to go up to at least to MGO 400. Are you sure the 250 isn't the weight of the jar? 250 g is pretty common.
Also, if you have any allergies, the propolis needs to be monitored carefully. Most people with pollen allergies will eventually have some problems.
My arm...not so good.