My name is Susan and I have been undergoing radiation for two weeks and it started to get so tough for me. I have very painful sores in my mouth. I have 5more weeks to go and don't know if I can withstand this pain. I got day off from radiation due to blizzard here in new York. Can anyone offer any relief. Everything I have gotten so far has not worked.
Really appreciate some feed back.
Thank you all
Susan t

Ps. I have stage I oral cancer

Susan welcome to OCF. You need to tell your doctors of your pain and get some pain meds. Ask about the fentanyl patch, it is very easy to use. You only have to change it every 3 days, it provides steady amount of pain relief. It will take 24 hours from the time you put it on til it kicks in. Read and follow all the directions including avoiding hot showers and baths. Then ask for some type of liquid medication like neurontin, hydrocodone or oxycodone.

You should be rinsing your mouth several times per day with a baking soda mixture. Take 16 oz warm water, 2 tsp baking soda, 2 tsp salt and mix it together. Swish this around in yoru mouth for a few seconds and spit it out. If it burns, cut back on the salt.

Ask your doc for a prescription for magic mouthwash. This has several variations. The one I used was lidocaine, malox and lidocaine. Swish this around in yoru mouth for about 20 seconds and spit it out. This will numb your mouth so you are able to eat.

I do completly understand what you are going thru, but you cant quit. You must talk with your medical staff, they must be kept aware of your aches and pains or they arent able to help you. What has your doctor given you that hasnt worked? Did you tell the doc it didnt work? Unfortunately it is going to get worse as you keep going. Getting the pain under control will help you to get thru this.

Even with the snow, Im sure you can call your doctors office and they will call something into a pharmacy for you.



I just read your other post. Quitting is NOT an option. You must continue and finish your treatments. Oral cancer is a very fast and deadly disease. Please add more info about yourself and your oral cancer in your signature. There is lots of help and support here and you will get thru this.

Thank you so much I will ask my dr. The only thing he gave me for prescript. Is ulcer ease rinse and yeast infection medication. Told me to take tynenol for pain.
How much worse does it get?
Thank you

Everyone goes at their own pace and experiences things in their own unique way. We all recover differently and react to procedures and medications differently. Its no walk in the park but you can do this!!!! Nobody can really answer your questions about how much worse it gets. If your pain is under control then it isnt that bad. Ive been thru much worse and Im wimpy!

I dont know what the ulcer rinse medication is. The yeast infection medication is for thrush. Maybe you have that??? Is your mouth all white? Thrush is fairly common with oral cancer patients. Anyway, here we are all patients and/or caregivers but we know ALOT about oral cancer. So if you use the medication names we usually will know what you were given. I cant believe they told you to take tylenol. I think I started the patch when I was about the 2 or 3 week point.

Never give up!!!! It is very very important that you go to your radiation treatments and finish. So tell us more about what is going on with your oral cancer....

Where exactly is your cancer?
How old are you?
Where are you being treated in NY?
(There are some top cancer hospitals there)
Did you have any surgery?
Do you have a caregiver?
If not, do you have friends/family to help you?
Do you have a feeding tube?

Sorry for all the questions, it will help us to answer your questions and to help you.

You r so knowledgeable. The cancer was on the right side. I am 51. Treated at nslij very good team. Yes surgery and removal of teeth. I do have a caregiver. No feeding tube. The medicine is diflucan. I am going to ask Ro about patch. The ulcer rise is also used for babies when teething. It numbs it temporarily.
I appreciate the positive attitude.
Thank you

Ive taken diflucan, it is for thrush which can be very painful. The ulcer medication could be magic mouthwash.

North Shore-Long Island Jewish Health System, is that where you are being treated? Has your doctor treated many oral cancer patients? Some doctors arent that familiar with the pain that goes along with oral cancer treatments. Oral cancer patients have alot of side effects happening right along with their treatments. Make sure your team understands what you are feeling so they can respond with better medications. Managing your pain is important to how well you will do with getting thru this easily. Dont be afraid to speak up for yourself, its the only way they will know how you feel.

Another very important part of getting thru this is managing your nutrition. Make sure you take in 2500+ calories and 48 oz + in water daily. More is even better. The better you do with these things the better you will feel. If you can get more in daily do it. It is so easy to get dehydrated and/or malnourished when going thru radiation. Make sure no matter how difficult it gets that you keep swallowing something every single day. The swallowing muscles can very quickly 'forget' how to swallow which causes bigger problems later.

It is also very important to stretch yoru mouth open as wide as possible and hold it for a few seconds, repeat this several times per day. This will prevent bigger problems later.

Im glad you have found OCF. It sounds like you needed some support. This site will help you every step of the way. We will cheer you on and help you to overcome the bumps in the road. A positive attitude is important and will help make this easier. Another side effect of this treatment is depression. Many oral cancer patients take anti-depressants to help make things easier. An important thing to always remember is that we are all different and will react in our own way to medications/treatments. Some will sail thru it while others struggle.

Please feel free to ask questions. Best of luck with everything

Susan, you definitely need to get some more stuff to help you deal with the pain. Whether it's the magic mouthwash or plain viscous lidocaine that I found helpful, you need to address this because I guarantee you things are not going to get easier as RT progresses.

BUT YOU NEED TO KEEP YOUR TREATMENTS GOING WITHOUT FAIL. Easy to type but you're the one doing the hard work now and we all know how tough it is. I'm glad to hear you have someone to help you.

A fentanyl patch is a great suggestion. Oral oxycodone or dilaudid or whatever your doc prescribes is something else you should be asking for. It really helps. I used both the patch and Oxy and I'm frankly surprised that they didn't give you a prescription for some of this stuff right off the bat.

I also used Diflucan and in my case it kept any thrush at bay. Maybe if you're getting it while still on the med you need something else or a stronger dose. Your doc will need to be the judge of that.

Mainly - hang in there! Like yours, my mouth was a mass of open sores for weeks. It hurt to breathe. But you WILL get through it, I promise you.

Post here often. Ask questions. Send PMs. We're all here to help.

Courage.
David 2

I did not get the sores until later in treatment but boy do I know what you mean by pain. I had times when I dug my nails into my desk and tears of pain came.

My team started me with liquid codeine (it goes to work much faster) and magic mouthwash. I graduated to the Fentynol patchs when the sores came.

My doctor said on a scale of one to ten for pain when treating all types of cancer, Oral Cancer comes in at a Nine. I asked him �What�s a ten?� he said �Oral cancer without pain meds�

I know what it's like to get sores so early in tx. I got a mouthful of them just after 4 treatments. Hopefully magic mouthwash or lidocaine will work for you, they never did for me.

What I did get was the fentanyl patch, they have 2 different dosed ones, so they usually start you on the weaker one, if it's not managing your pain for the most part, talk to your doc about maybe uping the dose for it.

Otherwise they first put me on percoset, but with perc, you are limited on how much you can take a day due to acetometaphine in it, just like in tylenol. So they then gave me oxycodone, which is percoset without the acet, so you can take a bit more, and that seemed to help for me. Everyone is different, but this was my experience.

Also, the fentanyl patch can make u pretty nauseated at first, that will go away once your body adjusts to it. then again i had bad nausea throughout my whole treatment starting at the end of week 2, so it might have just been me.

I will say this though, for me, rinsing with the water, baking soda and salt mix 5 times or more a day did help me alleviate some pain from those sores and i think it also helped keep my mouth from getting raw.

I would also suggest you try to keep doing whatever you can to keep swallowing, thicker the better, but i unfortunately wasn't able to swallow anything after 3rd week until at least 3 weeks after, except for saliva, and I had no swallowing issues, but again, everyone is different, some do and some don't.

Difflucan can sometimes make you nauseated and dizzy if you don't eat something shortly before or right after, otherwise you may just be dehydrated and that can also cause the light headed dizzy feeling that can be amplified by difflucan.

Hope you make it through this, no matter what, keep pushing through, you will be glad you did at the end, maybe like a month or so after, but i had many times when i just wanted to give up, or just take a break, and now i am very glad the people who were helping me never let me stop or take a break.

Good luck with your battle, and if you have any further questions, this is the best place to ask. It's not always that someone has gone through what you are, but more then likely, there will be someone on here that can give you some really great advice!

Stay strong and keep fighting as hard as you can!

I had just finished up radiation last Thursday for tongue cancer How long do the sores last and when can I start to taste again. If anyone can help it would be grateful. Thank you.