Hi All,

Had my first rad treatment today and all went well. My brother drove me and the nurses let him come into the treatment room while I was lined up and he was able to watch the process from the control room.

After It was completed the rad nurse met with me for 45 minutes and went over everything in detail
with me. The side effects, Pain Med. Oral Hygene etc. She was very thourough. I was impressed. I told her about the website and how I have been educating myself on what to expect. She has been in her job over 20 years.
She told me when and if the pain starts they will react quickly to make sure I don't suffer unneeded
pain. I was much more impressed with her than the rad on'gist. I will meet him every Wednesday if I have any questions. I am scheduled for 30 treatments of 200 rads per session and probavly will have what they called a boost at the end. I'm not sure what that meant other than receiving more treatments than 30? I wore my Oral Cancer
T-Shirt with the dogs on it. She said to expect to start feeling something around two to three weeks. She gave me Biotene samples and a cream to massage on my neck daily. The tech's are great.
The whole process for the rad only took 15 minutes. This is all for now, I want to thank all who have helped educate me in this process. Thanks again, Daniel

Congratulations, Dan!
I am happy that it went so well for you! You will find the nurses and techs to be the best source of support. I went through radiation 10 yrs ago for breast cancer and I LOVED those folks! Where did you get the Oral Cancer tee shirt???????
Judy U

Hi Dan,
Oh this brings back memories of my not-so-distant past! You can't beat a well educated nurse - they really run things. 95% of my interface with the medical establishment was through the "advice nurse". I hope that you are taping the advice or have someone with you who is a superior note taker. It's really easy to miss important points while you are the patient and your mind is racing.

Typically a "boost" is when they give you the entire 7,000 rads instead of 5,000. It's still a fractional dose rate of 200 or so rads a day. They just extend the treatment. Your treatment is pretty fast - I was on the table for 35 minutes a day for 33 days. Longer for the once a week x-rays to verify alignment. Look to get a CT at about 3 weeks also. They may even tweak the program a little bit at that point, but you probably won't notice much difference. As you lose weight the mask will loosen up a little and that's a good thing. It left an imprint that looked like scales on a fish (or the creature from the blue lagoon ;-)

Surprisingly, the radiation oncologist has given me the most invasive exams of any of them with the exception of the latest exam by the head and neck surgeon where "visualization" was called out on an MRI by the radiologist.

Don't forget -no creams until AFTER your treatment. You want your neck clean and dry for treatment to prevent a bolus effect to the skin. You probably won't need it right away anyway. And also remember DO NOT SCRATCH - if it gets really itchy, they can prescibe a steroidal cream that works pretty good for those itchy moments. The last thing you want to do is exacerbate skin damage.

One day at a time...

Dan,
First of all I am impressed with how prepared you are. I did not discover OCF until I was about finished with treatment. Secondly, I am impressed that the nursing staff spent so much time with you. At MD Anderson the techs were always so busy running folks in and out of radiation that they had no time to say more than hi and bye.

My sessions were also very brief, averaging about 10 to 15 minutes each. Enjoy eating everything that you can now. As you have heard, things will change in two or three weeks and swallowing will become very difficult. You have reminded me, like Gary, of what it was like to go through the process. It sounds like you are being well taken care of. Best of luck and please keep us informed about your progress.

Danny G.

hi, today I go for radiation treatment 20 of 35. I'm getting XRT because of the size of the field (not strictly being an oral cancer, my tumor originated in the supraglottal part of my larynx but then spread up my pharynx with some small base of tongue involvement). They gave me an induction round of chemo alone before they started the radiation (since surgery wasn't an option) and that seems to have exacerbated some of the effects of the radiation (which is exacerbated further by the fact that I'm getting some chemo during the radiation round as well). At this point, the side effects are limited to my ability to swallow; my skin is holding up quite well and I've had nothing like the nausea and other nasties I've read elsewhere). I would voice one word of caution on the nurses; one of them told me that in her experience you didn't always need a feeding tube which made me think I could work to avoid it (that somehow the avoidance was within my power). Well, I was eating and drinking pretty well up to the weekend after treatment 14 and then all hell broke loose -- the pain in my throat accelerated and I woke one morning suddenly unable to swallow anything beyond tiny sips. One week later and my feeding tube in in place after four days in the hospital (my feeding tube installation wasn't simple because of surgery I had when I was 8 years old (!!!!) to repair a hernia caused by a congenital weakness in the stomach wall -- you should have seen the gastroenterologist's eyes bug out when he saw where the scar was).

But I'm doing fine, and while my feeding tube thing was a bit hectic, it all worked out for the best. I gained back all the weight I lost the days I couldn't eat (they have me on Ultracal for the feedings). Good luck with the rest of your treatment; I'm working on the assumption that the rest of mine will go smoothly as well.

Cheers,
Laura

The

Hey there...My daughter is 16 and going thru radiation treatment now....She is in her 5th week...We thought that she would only have 6 weeks but found out last week there will be a total of 7 weeks or 35 treatments....She was not very happy but is coping....Everyone is right about eating things u really enjoy now...She pigged out within the first week...Loving nachos and salas....Which she cannot eat now....She has lost her taste for just about everything...So it is hard to get her to find interest at moment in eating...She knows it is important to eat...she dropped 3 pounds in one week...Her weight is monitored every Monday...She has x-rays done every 5 days to be sure everything is on target...Her oncology nurse is great...She wants to know every little thing bothering her...She has some trouble eating but thank goodness we have not had to have a feeding tube...Her face has turned extremely red...Like a bad burn and very dry....She has creams and lotions to help sooth it...Over all her spirits are good...And this is the most important thing in recovery...Spirit and attitude...She is not going to let anything hold her back and either should u...They are now narrowing the field they are treating...She is treated from the eyebrow to the middle of her chest...Her cancer is in her salava gland...She will total loose that gland so she is on a pill to help produce salava....She goes to treatment, school, cheerleading , and part-time job...She gets very tired during the day but keeps going....She has a few bad days where she has had to stay home....So u know if this 16 keeps going, u can...There is an end to this part of the journey...For her this part ends when she gets to carry her mask home for good...

I have found that this is a great place to get advice and to be able to talk to others that are experiencing what u are....Keep ur chin up...