I have now completed 21 of 33 IMRT Rads (66 Gray) with a fairly wide field (was readjusted after 3 rads). My beard and mustache are gone, my neck/mouth are red from the radiation, I have a dry mouth and when I swallow I have a scratchy feeling. There are a few mouth sores but they seem to be healing. Of course there is no taste.
This seems quite strange since I was expecting a lot more serious side effects. My gums which were very sensitive are, beside the fact that they are whitish now, nearly normal and brushing teeth is nearly normal. I think that overall, I felt worse a week ago. I am using Biotene toothpaste and mouth wash, used to rinse with oral magic priot to brushing. Over a day I may take 10mg of oxycodone (regular dose is 5-20mg every 3h).
All of this seems very strange to me, and reading the experiences makes feel both guilty and uneasy. The latter because I am expecting the other shoe to drop (side effects) and also because I wonder how effective the treatment is, if there is so little collateral dammage. ..... paranoia! In a way I rather be more miserable at least that way things would be more "normal" which is crazy too.

Experiences anyone?

Thank you.

Markus

Hello Markus

Your post is an unusual happenstance for me.

I am starting IMRT next week and can not speak from experience, but I have made many friends here and have spoken by phone with many.

This afternoon I was pleasantly surprised by a phone call from forum member MKlein of Oregon.

He discussed his IMRT treatment and was also saying that it was not as bad as many have said. He was even thinking of removing his PEG tube with only 9 treatments left.(Never used it) I said to wait as the radiation keeps working for up to 6 weeks after your last treatment.

He is eating (no taste) has a little hair loss but said his side effects were minimal. He has not even taken any pain medicine. (Has some pain)

Long story short, no two cases are alike. He had his tonsils removed then IMRT. We discussed age, state of health, type of equipment used among many other factors as to why some fair better than others. New IMRT machines are much more improved from a few years ago.

Forum member "Kevin-Memphis, TN" posted a topic called "IMRT" in the forum "Medications, Treatment, Procedures on 6-13-2007 you might find interesting.

There are many here who have had very difficult experiences with radiation, to put it mildly.

Mind you that neither of us are doctors but simply cancer patients, we came to a consensus that no two cases are the same and no two people react exactly the same.

This is a very interesting topic and I'm sure you will here from both sides of the table.

Quite frankly your post and his phone call eased my fears somewhat. But in reality, how I will tolerate the IMRT is unknown.

Wishing you continued success. Petey

PS: If you cross paranormal and normal do you get paranoid?

Hey Markus

The RO stopped me at 28 for a 2 week break (I actually completed 35) and sounds like you're in better shape that what I was at that point. Count your blessings. Everyone reacts and responds a little differently. There were 4 of us at the Cancer Center here going through the same protocol at the same time, and the results and reactions were different for each one of us.

Don't feel guilty, just smile!

Kevin

Hello Markus, I felt good up until about treatment 28. I stopped eating after my second chemo but as far as mouth sores and all the pain that didn't come until the end of my treatments. It never got as bad as I expected. At week two my RO would look into my mouth and say let me give you something for pain. I just didn't need it until week 5. Then the pain wasn't unbearable but it would deter me from drinking my meals regular so I started taking the medicine. That pain lasted for 4 weeks and then just stopped. I think that with the improvements in the IMRT it helps some. I didn't feel guilty I was extremely greatful. And I don't think anyone here would want anyone in treatment to have a tough time with it so no reason to feel guilty. I hope your treatment goes as smooth as it has been. Good Luck

Hi Markus,
I understand your feelings of guilt and uneasy. Except for a reaction to the drug that was to protect my saliva, I had a relatively uncomplicated experience with my treatment. I asked many questions in the forum and they all seemed so petty compared to what others were going through. For others just starting treatment, it may be helpful for them to know that some people do not suffer as many side effects (e.g., the other shoe won't drop - it happens). I had no feeding tube, kept all my teeth, had no pain medication (or pain that needed it), and drove myself to the cancer center. For those things I am very grateful. I was fortunate that I worked minimal hours from the I had my tumor removed to 7 weeks after treatment ended. Most of my time was spent trying to eat or drink. I would have not put in the effort if I wasn't aware/scared of the horrific side effects waiting to appear. I started back to work after 7 weeks - 4 weeks at 20 hours and now have been cleared for 4 weeks at 30 hours. My only complaint is I still need 12 hours of sleep at least every other night. I get fatigued after a 1.5 hour walk (tried it twice and was exhausted the next day - My doctor said this was "reconditioning"). This forum kept me on the right track and helped me avoid many problems. I think my friends were surprised at how much I expressed my happiness with my results. I'd talk about being sick from that drug and then switch to how pleased I was with how things were going (e.g., I puked all night, but this is going really well).

I hope others will make out the same.

Good morning,
Can't sleep, my significant other is in his 3rd week of radiation for throat cancer and the sore throat is starting. Any suggetions from anyone about what works best to offer some relief. I've been on the internet for hours researching everything I can. What about Biotene, Miracle mouthwash, Miles solution? Please let me know. Thanks.

I know for me there was no single thing that really did the trick. I tried a variety of things at different times. Overall I think the soothing effect of room temperature, slightly flat Club Soda as a gargle gave me some comfort through keeping things moist and clean.

Viscous lidocaine ( 2%, a prescription is needed) helped to numb things when the irritation got really bad. You just need to be a bit careful not to use too much, and to avoid swallowing it. It numbs your mouth, but it'll also freeze your throat which is almost as unpleasant as having it sore
Rest is best. He's going to get increasingly fatigued, and the more he sleeps the easier he'll find things
Wayne