Scared!! Diagonosed with throat cancer

On Oct 18, 2014 2:09 AM SkanJim wrote:

Hi Cheyenne,

Below is a write up I did for our support group, and it gets shared with people preparing for RT.  I hope it helps!

SkanJim

RT Therapy: Par for the Course

I think it is safe to assume that most of us will experience some level of anxiety once we are all snug in position for the day’s RT treatment.  Based on a suggestion from my brother, an experienced MRI patient, I spent my 33 treatments playing golf! 

The first day I simply closed my eyes and imagined standing next to the 1sttee at my favorite golf course.  It’s my turn to play.  I proceed to tee my ball and stand behind it to line up my shot.  After two practice swings I hit my first shot down the left side of the fairway.  I put my club in my bag and begin the walk down the first hole to my ball.  It takes a few minutes to get to my next shot, and along the way I can smell the mown grass.  About the time I finish the first hole my treatment is over. The next day I close my eyes and begin the walk to the next tee.

The key for me isn’t golf. It is my familiarity with the golf course.  You can take a walk around your neighborhood, or prepare a different recipe every day.  A couple of days I skipped golf and went fishing.  Whatever you choose, go step by step and be sure to do it in real-time.  Every day gets easier.

Hi Everyone

Sorry I haven't been on to respond to you all. I made it through the first week. Taking the ativan to help with the mask and repeating the Lords Prayer and Psalm 23 helps too. Have tube and am learning how to feed myself through it although I am currently still eating. Mouth is a little dry but not bad and I am forcing myself to drink as much water as I can possibly drink. (4th bottle already today) I have a question about flouride. How long do you leave the trays in and what kind of flouride did anyone use. My dentist gave me Prevident 5000 Pro and if I left it in all night my mouth would be burned. I also have gel cam but haven't tried it yet. I have read that you shouldn't leave the trays in for very long. I am going to ask the Dr. tomorrow.

I appreciate all your words of encouragement.

Cheyenne

My bedtime routine is to floss.  Then brush with a toothpaste called Squigle.  Then rinse with the baking soda/salt solution.  Then I use the fruit flavored Gel-Kam in my fluoride trays for 10 minutes.  

My wife searched the internet and found the Squigle.  It doesn't burn at all.  I have also found the fruit flavored Gel-Kam to burn much less than the mint.  Yes-it still burns, but not nearly as much as the mint.  I leave the Gel-Kam flouride trays in for 10 minutes.  The burning is usually gone within about 10-15 minutes after I remove the trays.  Remember, do not rinse or put anything in your mouth for at least 30 minutes after using the fluoride.

Good luck.  I hope this helps and I'm glad you're making it through the radiation ok.  Whatever gets you through it.  Hang in there.

On Nov 02, 2014 8:39 PM atcbugsy wrote:

My bedtime routine is to floss.  Then brush with a toothpaste called Squigle.  Then rinse with the baking soda/salt solution.  Then I use the fruit flavored Gel-Kam in my fluoride trays for 10 minutes.  

My wife searched the internet and found the Squigle.  It doesn't burn at all.  I have also found the fruit flavored Gel-Kam to burn much less than the mint.  Yes-it still burns, but not nearly as much as the mint.  I leave the Gel-Kam flouride trays in for 10 minutes.  The burning is usually gone within about 10-15 minutes after I remove the trays.  Remember, do not rinse or put anything in your mouth for at least 30 minutes after using the fluoride.

Good luck.  I hope this helps and I'm glad you're making it through the radiation ok.  Whatever gets you through it.  Hang in there.

Thank you. I am going to see if I can find squigle. I will have to see if the gel Kam is fruit flavored or not.

Cheyenne

Cheyenne,

Glad you are getting along now. Congrats.

We were recently discussing Prevident on another thread. You should leave it on/in for at least 30 min before rinsing or eating/drinking. many of us still use it, and I now leave it in overnight.

I found Spry sugar free gum to be very handy, b/c I had some serious dry mouth a few weeks after the treatments began. I was chewing so many/day I ordered a bottle of 500 from the company website. I liked the cinnamon type. My dentist gave me something called MouthKote which was just a simple lemon "rinse" which I also found soothing. You'd think lemon would not be but it was one of those weak dilutions, along with something else that helped (I forget). Again, I ended up with a very dry mouth for a while and these things helped. You may not get so dry.

best to you,

John

Hi Cheyenne -

You made it through week 1 - you're doing good.  

I had a little different experience with the dental trays.  My radiation oncologist is the one who ordered the dental trays - and talked directly to my dentist to conveyxactly what he wanted.  My dentist made a mold and produced my trays from the mold.  I wore them every time I went in for a radiation treatment.  There wasn't any gel ordered or used during treatment.  Our mouths get sore beginning a couple of weeks into treatment and anything like the gel could have had me going through the roof.  Post treatment is when I was prescribed the gel - and still use to this day.

The squiggle sounds like a good possibility but I was told to use a child's toothbrush which was more gentle than an adult tothbrush. 

Week 1 down and only 6 to go!

Remembering you in prayers daily - and thinking earlier today you have one full week now behind you. 

Diana 

I just googled squiggle toothbrush - and found it is a child's toothbrush. 

Diana

Hi Cheyenney dentist told me that 5 minutes id plenty . I used to leave them in for 30 minutes but he told me that the teeth only absorb so much at one time and 5 min is sufficent and also brushing with floride helps too along with flossing. I did use prevident but my dentisr started carrying Floridex it is exactly the same but double the amount for less money. I also brush with regular roothpaste too.

gary

Cheyenne -

I will answer any questions as they arise but I think it would be information overload if I shared any post treatment experiences.  It can be overwhelming to decipher a lot of information and then mentally store much of it - some you most likely won't even need. 

Those of us who are down the road a bit tend to have our 7-8 week treatment period blend together.  Several years ago I realized that while some wanted to hear all about our treatment and post treatment experiences prior to treatment others only wanted information provided as needed.  

Did your oncologist recommend gel for your dental trays?  Even if your dentist recommended gel, I would run it past your oncologist.  My dentist was even unsure as to what my oncologist wanted when he ordered the trays which is what prompted their phone conversation. 

Your oncologist is focused on protecting your teeth against the radiation while your dentist is interested in long term care.  Focus more on protecting them as much as possible the next six weeks against radiation. There will come a time soon that you will find your mouth and throat are very sensitive and this will last for a few weeks.  Citrus may actually irritate your mouth but salt water rinses and magic mouthwash will most likely be prescribed for any mouth sensitivities.  Dry mouth will most likely occur a few weeks down the road and while I found biting into lemons helped jump start my taste buds I would hold off trying it until several weeks post treatment.

Week 2 and you are doing good!

Diana 

hi 

my uncle is 65yold and he had that mask moulded to him. everyday for 5 weeks treatment and a nose tube for feeding through that mask.u no i have that mask sitting in the back yard.he finished treatment 10. 10. 14.

waiting till he gets stronger so he can go and smash it. lol.

its not easy darlin but have faith and patience. you'll get through this.

dont give up.u gotta keep going . everyday. fight and be a survivor. ??????????????