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First day of radiation tomorrow

john_win123
Posts: 4
Joined: Jul 2013

Hello everyone,

I have been following this forum for almost two months now and have learned so much from everyone's experience. I'm a 26 year old that was diagnosed with mucoepidermoid carcinoma two months ago. The tumor was located on my hard palate and was surgically removed about a month ago. my staging was t4n0m0. About 75% of my palate was removed and the upper left jaw along with 6 teeth as well. The last two months have definitely been an adjustment, and I've only been able to get through it by the grace of God. I've been blessed with an amazing fiancé and family. My first day of radiation therapy will be tomorrow and I'm a little anxious. I've read a lot on this forum and I feel like I have a fairly decent grasp on what to expect. Thankfully, they only plan on radiating the upper portion of my mouth, where the surgical site is. I will have to use a bite block to keep my jaw open and will have to consciously keep my tongue as low as possible to avoid being radiated. Seems like a tiresome task to do for 20-30 min whole also trying to remain completely stationary. Does anybody have any pointers on helping time go by a little quicker? I've read about counting the cycles as the machine rotates and music. Thanks in advance!

CivilMatt's picture
CivilMatt
Posts: 2921
Joined: May 2012

 

John,

Welcome to the H&N forum, sorry you find yourself here, but we do radiation advice for sure.

Other than the confinement of the mask rads were relatively easy.

I counted, I played music, I looked around the room (through my eye holes) and watched the line-up lasers.

A typical day for me was a swish of magic mouth wash in the parking lot, a bathroom break, a swish and spit of water, the mask, the mask wiggle, the music, the adventure and you are done.

You can ask them to talk to you if you want, you can raise your hands and stop and start over if you want.  You will develop your own procedure before you are done and then it is over.

Also, I happen to take one Lorazapam 30 minutes prior to rads each time (I felt no pain).

Good luck and happy rads

Matt

 

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

So happy that you found our site but sorry you had the need. I had SCC of the lower jaw. I don't think your time on the table will be quite as bad as you think, it actually goes by pretty fast. It's the side effects that can get you down. You won't get all of them that you hear about and the ones you do get will be in varying degrees. Hydration and nutrition are key. It is important that you keep swallowing or you could lose your ability to swallow. It was my lower, not upper jaw, but I did not have a sore throat and I did not have the problems with mucus. My worst side effect was sores on my lip, very painful for me but they cleared up right after I finished tx. My neck and cheek turned brown and peeled but it never broke open. Hindsight is 20/20. I have what they call a mild case of trimus which could possibly have been helped or avoided by a simple exercise. Trimus is when you can't open your mouth as wide as you once could. I have to eat sandwiches with a knife & fork but thankful I can do that. Ask your doctor for some tongue depressors. Tape them together (I just use a rubberband) and put in your mouth to stretch. I was told not make it uncomfortable.  Best of luck for an easy and uneventful journey.  Sounds like you have a great support system!

 

Candi in St Louis 

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

Everyone's treatment is different but I was never on the table for 20-30 min. 10 at the most. The actual treatment was even shorter than that but it will take them a few minutes to get you strapped in/lined up/ & then undone afterwards. Btw, I was 27 when diagnosed. Different cancer (Adenoid Cystic Carcinoma). Its hard facing cancer at any age but it seemed to hit me harder in my 20s. There are some others with your same diagnosis here. Hooefully they will chime in soon. Good luck with treatment!

jim and i's picture
jim and i
Posts: 1599
Joined: May 2011

John you found the right place for support. These people are great. My husband Jim had stage 4 base of tongue. He went through 35 rads. Hardest part for him was laying on his back because he has scoliosis in his upper back. Worst side effect eas dry mouth and thick mucous. He was in the rad room about 20 minutes but most of the time he said was getting everything ready. Most on this site had some kind of mild tranquilizer to deal with the confinement. Jim was one of the few who didn't. He has no phobias. I would probably have to have major tranks. As others stated, hydration and swallow and stretching of mouth are of major importance. I pray you have an easy time and a complete cure.

Debbie

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

Everyone has a different strategy for how to make the sessions go by faster--the important thing is to find out early what works for you, and then stick with it.  Make it a routine.

I took the same approach as when I have a long plane flight.  Rather than stay busy and hope it makes the time go faster, I zoned out by clearing my head as much as I could, breathed evenly, and avoided thinking about where I was, and what I was doing (or having done to me).  I don't meditate, so can't say if it's the same as that--but maybe someone else can.

Best of luck finding something that works for your time under the mask, and more importantly for NED results down the line.

Mike

 

john_win123
Posts: 4
Joined: Jul 2013

Thanks to everyone for the kind words and suggestions!

Candi - I've been battling trismus ever since i had surgery to remove the tumor. I've been using the tongue depressors for about a month now. As you know, it's a slow process but I will definitely be keeping that in my daily routines. I have about 65% of my opening when using the sticks! but only about 40% sustainable without them. The difficulty swallowing is something I'm hoping to avoid; my rad-onc plans to only radiate the upper portion where the tumor was. He says he will try to spare everything below to try to minimize side effects. I will probably work in some swallow therapy just to be sure though.

Meagan - I also took the news pretty hard (anybody would at any age). I'm just very thankful to have been blessed with the support group that I have :).

Debbie - I have a hard time laying still on that tabke too. I don't have much of a phobia with the mask so i think I'll be okay without the meds. I'll be sure to ask for a few more support pillows to try to help with comfort.

Matt and Mike - Thank you for your suggestions and support!

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Just wanted to send you a quick thinking of you "Thoughts & Prayers" this morning....

Wear comfy clothes...., take your favorite CD. For me having a CD helped tremendously..., it gave me a reference of time... 4-5 songs and done for the day.

It shouldn't be more 15 minutes or so, at least usually.. Also most of us had masks made, then strapped to the table for a very, very precise fit and no movement. Scary I know, but like Matt mentioned, a little anxiety med like Xanax for me took the initial edge off. I was still able to function, drive, etc...

After the first week I no longer needed it...

Anywho... good luck, know that your life is being saved by the small torture you are going through... You're tough, you can take it, the cancer will die from it...

Best,

John

 

TracyLynn72's picture
TracyLynn72
Posts: 680
Joined: May 2013

Hey there!  I had mucoepidermoid carcinoma of the lower left mandible.  Since it was IN the bone, I'm classified as MEC Bone Cancer.  Mine was t2n0m0 and I had to have two surgeries to totally get the thing out.  I have a titanium plate instead of the lower left jaw now, they had to remove 1/4 of the jawbone.  I finished 30 rounds of rads June 21st this year.  I had to hold a tube in my mouth to keep my tongue "out of the way"...it was annoying, but not painful.  I was on the table no more than 10-15 each time and that included the xrays they took several times a week before the rad started.  The mask held me in place so there was no movement.  The grace of God is definitely what got me through the recoveries from surgery, I promise you that!  I will add you to my prayer list and ask God for many more mercies to come your way.  When I was having treatment, I would lay down on the table and start praying...for my family, my friends, my church, for the doctors, nurses and staff and for EVERYONE on CSN and those fighting this awful disease.  I found out as time went by, it helped me feel at ease and the treatment would end before I was done praying :)  I truly wish you the best.  Drink a LOT of water and stay hydrated...you'll be glad you did :)

phrannie51's picture
phrannie51
Posts: 3682
Joined: Mar 2012

John.  Sending good vibes, and positive mojo on your first day of rads.

p

john_win123
Posts: 4
Joined: Jul 2013

Thanks again for the support everyone! Day 1 was not nearly as bad as I thought. It only lasted about 10-15 minutes and I was able to manage quite well. Thanks for everyone's advice because they all helped! Was wondering if anybody experienced any vision changes during treatment and if so, were the changes permanent. I noticed a blue flash of light whenever the rays were being fired, which I was told to be normal. However, the image on the ceiling would distort as well. this would only happen when they rays were being emitted. any thoughts?

Again, thank you all for your prayers and we'll wishes :)

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

You opened your eyes,,,!!!

LOL, OK sorry, I'm a bit abi-normal in my behavior and sense of humor... I can now blame that on the after effects of treatment (but in reality, I've always been a bit off...shhhh)...

I did see the blue light special on occasion, but I really didn't open my eyes.. I guess in my mind, I figured the eye lids would protect me, LOL...

JG

 

john_win123
Posts: 4
Joined: Jul 2013

Lol I will give your method a try tomorrow

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