I just finished radiation yesterday for a tumor in my left tonsil. I had 19 days of one treatment per day(Mon-Fri) and then 11 days of two treatments per day. I did not have any chemo.

Last week, I developed two sores on the bottom of my tongue (one on the right and one on the left) and one in my left jaw.

These things are causing some of the worst pain I have ever felt in my life. I am not exaggerating. I am a fifty-two year old man and I actually broke down and cried trying to eat a small piece of fish the other day. Of course, we happened to be in public restaurant at the time. It was great for my ego 

My doctor has me taking 2

Max,

I had really painful mouth sores for about the last half of radiation and several weeks afterward. For me, the numbing medications worked for (at most) 10-15 minutes, so I had a little bit of time to try to get soft or semi-liquid food into my system before the pain came back. I told people at the time that if they had ever had a serious, blistering sunburn, they should try to imagine having it on the lining of their mouth and then trying to eat or drink anything.

I suspect that pain medications now are more effective than what I had 17 years ago (I know I never had anything as strong as morphine when I was going through radiation). My husband probably got fed up with listening to me scream my lungs out at mealtime. For me, recovery seemed slow, but I eventually got back to the point where food tasted good again and eating stopped being a chore.

Unfortunately, if you have just finished radiation, there is a possibility that the effects will still be with you for awhile longer, but hopefully you'll start to turn the corner soon.

Please be sure you are continuing to keep your doctors posted on your pain levels to be sure they are doing everything possible to manage it.

Cathy

That's it -that's all your taking? Just morphine?!?!?! Morphine is a fast acting short term opioid (used for breakthrough pain) - you need to be on a long term opioid as well such as Duragesic or oxycontin.

The sores were tough, hurt like hell and the narcotics caused indescribable constipation. I would push for better pain management then talk to a nutritionist about constipation management as well.

I can't even imagine eating in a public restaurant (or even going to a public place this early in your recovery). First off your immune system is trashed and you are highly susceptible to colds, flu and opportunistic infections. Cold or flu could cause pneumonia with a compromised immune system. I lived on a liquid diet for months, but I had chemo also which makes the sores even worse.

Max - can you give me any color on why you had the last 1/3 of treatmeants doubled up. i have 30 imrt treatements and have wonderedd why the can't double up m last week

Inadequate pain management -- how often do we hear about that on this forum? It is a real crisis in cancer care, per the pain-management specialist physicians. It appears some doctors are more concerned with possible legal complications than their patient's welfare.

Run, do not walk, back to your doctors and demand that you get appropriate pain medication which, as Gary notes, should be *either* oxycodone or (better for many) Duragesic patches. You must be your advocate in this, it appears.

And stick to soft foods (nothing hard, crunchy, spicy or very hot or cold) until the sores heal. Swishing with salt/soda rinse and Biotene mouthwash will help. Drink Boost or Ensure if you cannot handle solids at this point, also pureed cream soups, soft scrambled eggs, cream of wheat cereal etc.

Gail

Warren,
It is my understanding (and I am not a professional), that some doctors believe the tumors may "harden" or become resistant to the radiation, so they come at it with the twice a day treaments. They actually hit the tumor from different angles during the second treatment.

Figured this was a good place to discuss my mouth sore issues. 22 treatments to tongue only with 8 more to go. I've had sores forming for weeks but just a couple of days ago they became very very painful. one located on tip of tongue makes talking and eating difficult without magic mouthwash. Started on oxycodone 2 pills every 4 hours. i'd say its working so so. still real pain despite oxycodone and had the worst bout of nauseous (sp?) of my life in car ride hoe from treatment. any advice wold ne much appreciated. thougt i was atacking it correctly. are there stronger drugs i should insist on getting. pain i can deal with, at least unil it gets in the way of nutrition and hydration

Chad F, formerly know as Warren F

Oxycodone is an opiate for short-term pain relief, it can be effective for moderate pain but most (almost all?) folks getting radiation to their mouth or throat will need to have better pain management. Oxycontin is a time-release, higher-dosage form of oxycodone and may be something to discuss with your doctors. However at my husband's hospital (Hopkins) they prefer to use Duragesic patches, which come in a variety of strengths and last for 72 hours. My husband was having problems with the oxycodone ("acidy" stomach, constipation) and they changed him to a 25 mg Duragesic patch which worked far better to control his pain and had fewer negative side effects. He occasionally had to use Oxycodone (or Tylenol, but latter only after checking his temperature as it can mask a fever and thus hide a developing infection) for break-through pain and especially, before he ate (he ate throughout, never used his PEG).

Adequate pain relief is a patient's right but unfortunately some doctors seem to be more worried about legal issues than with serving their patients. If you have *real* pain, it is highly unlikely that you will become addicted to these opiates. Do not be reluctant to insist that your pain issues be recognized and professionally addressed.

Gail

My doctors prescribed a couple of things that were helpful for the 'mucositis' radiation caused sores. One was a 'Miracle Mouthwash' or 'Stanford Mouthwash'. I don't know what the ingrediants all are, but your pharmacy should be familiar with it. Another help was something called 'Kemulaid' which is a topical powder.

The only thing that worked for Jack's pain was duragesic patches. He was also put on neuronton as some of his pain was nerve based and had good results with the combination. He used magic mouthwash, and lidocaine gel that he put on the sores with a q-tip but that only gave short term relief. The patches are also known as fentanyl.

There are many good posts here that we could use in the "Getting Through It" book project. Would any of you who posted here object to having your comments included in the book? Please let me know if I should not use your posts. Thanks, Tom J

Thanks guys for the quick responses. I've been getting by ok lately on 15mg of oxycodone every 3 hours and a lydocaine mouthwash for breakthrough pain and ahead of eating. tommorrow starts my last 5 sessions and i plan to get the duragesic patch so i don't have to take so many pills so frequently. pain has been manageable since last posted because i upped the dosage majorly upon approval of my doc. we celebrated my younger daughter's 1st b-day yesterday and i was in great shape considering i'm 25 rad treatments own.

I posted the following in the "Feeling Lost and Alone" thread but though it should go here as well:

I know it