I am new to this site. New to internet postings too. I am recently diagnosed with microinvasive squamouse cell carcinoma of my tongue and lining of teeth. 4 1/2 years ago I had my first diagnosis and had surgery to remove 1/3 of my tongue and a neck dissection. Dr. said he got it all and not further treatments were needed. I did all my follow up and then this summer, dysplasti lesions were found. I had two surgeries and more tongue removed. Changed Doctors and in Nov. a biopsy revealed the cancer. Since surgery was not doing much to help, radiation was chosen as my mode of therapy. I have had 7 treatments of 39 and they have hit me like a ton of bricks. Mouth is sore, loss of tasted, sores on my tongue, loss of appetitie. This has really scared me. I don't know if I can do this. Will it get worse? My Doctor says yes. But to stick with them and it will get better. But right now I am miserable and its so early in the treatment stage. Does anyone have any suggestions on the mouth sores. I irrigate 4 times daily with home irrigation (water, salt and soda) and I have a commerical product too called Prevention Oncology Mouth Rinse.

Hi bb,

I just answered you on the other post and said to go here. Then I see you did. Welcome!!

I know you are now starting to feel the effects of Radiation. Do you have a PEG TUBE? The peg is to help you get nourishment when things get hard to eat. Just remember to swallow and drink something all the time. This will help with keeping the esophagus open and the swallowing muscles in shape.
You will make it but there will be a few hard days.

I used the soda & salt 3 x a day. I also used a product called Gelclair in the morning before radiation.

There is lots to learn here and you will find lots of help too. So Welcome!

Take care
Diane

bb
welcome to this site. You're in the right place...we've all been there.

I also had extensive surgery (17 hours worth) prior to 30 radiaiton treatments. I won't kid you; if I had to do one or the other again, I'd take the surgery over the radiation in a heartbeat.

You will be sicker than you are now, almost certainly. You'll stay that way for at least a couple of weeks after treatment ends too. But you will start to feel better, I promise.

Do you have a PEG or nasal tube for feeding? You will develop a VERY sore throat, and you may not be able to take in enough calories or fluids to keep you going. Both food and water are Incredibly important. Don't stop either, not even for a day. You will wind up in hospital very quickly. Start using liquid supplements, right away. Boost, Ensure, Resource 2.0, Carnation VHC, Scandiashakes...all very high calorie balanced nutrition, easy to swallow.

Drink lots of water. You'll see your saliva production drop off and what saliva you do have will become thick. Water is important, so drink it often, every day. It also maintains your swallowing ability.

If you're having pain, talk to your Doctor. There is no reason to suffer, and there are lots of medications to help you through the tough spots.

The pain will be at times bad. The sores in your mouth will not get better for some weeks. In fact they may well become worse. Prepare for the possibility of nausea, and again, there is very effective medication.

Most importantly, keep coming back here. If you have questions, ask away. Someone will have an answer for you. It may not be the scientific, medical answer, but it will be based on real-life experience from someone who's been there and really understands.

If nothing else, let us know how you're doing. If you need to moan an complain, there are a lot of good listeners here.
Take care, much luck and stay positive!
Wayne

Dear bb, What are you getting in the way of pain medication? You need to ask for something that really works. Has anyone given you a script for "magic mouthwash" ?[this is a combination of several drugs, depending on your Rad. Doc's combination] that you can swish and swallow or spit out]. John needed lots of sleep during his rad tx. Are you getting alot of rest? You really have to stay hydrated and keep your nutrition levels up. How are you dealing with that? Please tell us more about what is going on so we can be of more help to you. Amy

bb, Welcome to the site. I had mouth sores too, the best thing i found for them, i got at a health store, it is called " DGL "(Deglycyrrhizinated Licorice Root Extract) I swear by this stuff, like others i tried the prescription stuff and it didnt help, i dissolved one of these tablets in water and put it on the mouth sores at least 4 times a day, and within a couple of days they were gone, but by the next day, i would have relief and some would be gone already, try to catch them early if possible. I also agree with Wayne, if you have already lost your taste and appetite, ask your doctor about a stomach tube, dont wait to long, keep swallowing though, its very important!!! Hang in there, and remember, we are here for you. Think positive, it will be over before you know it!!!

BB
I was going to stop during my radiation and chemo, but decided that I did not like the alternative to stoping. I found that my doctor were very helpfull to get me threw it. If to much pain or your to sick have someone call them
they would call right back and we worked it out.
Another mistake I made was trying to do it without the food tube, well 110lbs later 4 extra weeks in the hospital, use the food tube. Im sorry to hear of it coming back, that is something we all fear.

Thank you all for the advice. I am in a lot of pain today. I have a pain patch and can take supplemental pain meds. I do not have a feeding tube but am going to ask about it. Tomorrow I start my 8th treatment. I was thinking about giving up. But I will talk to the Dr. tomorrow. I am taking ensure 4 times a day and drinking lots of fluids. Mouth sores are incredible.
Thanks for your support

BB
I know the pain is great,I don,t feel right saying this and that, but you will heal and the pain will go away in time. Hang in there.

BB,

I am sending you an e mail I sent to another poster re what you should expect from rad. I did not hold back so if you don't want frankness, don't open it.

There are all kind of magic elixers but all contain a mixture of lidocaine, maalox, and other ingredients.
Yes, things will not get much worse. You just had your reactions earlier than most.
All will be OK, ask for MORPHINE, or anything that will help ease the pain. Your radiation oncologist should have already prescribed such medications but he/she probably did not expect these reactions so early. Don't be scared we've all been through it.
Darrell