First treatment - great!

Suez39

Hi everyone. Just wanted to let you know I had my 1st rad treatment today. Took 1 Lorazepam which did'not do anything for me. They put warm blanket on me put mask on which had the cutouts and was playing the rolling stones. Had scan for about 5 min then was out of machine for another 5 while they set things up. Then actual rad time in machine about another 15 min. Was longer since this was my first one. But was'not that bad. I counted the revolutions when the machine went around which helped alot. Great suggestion by some of you! Now I will be driving myself except for peg placement on wednesday cause have to stay over in the hospital. Hope I did'nt bore you guys that much. I know this is just the beginning and I have a Long painful road to go. I-m trying my best at this it's all I can do. Hugs from da pizanno!!

DanceSkater

Good for you !!

One down means you have one less to go !!   Great !!

Darkdancer333

Glad to see it went well.

Glad to see it went well. With the mask opened up it makes all the difference. Now that it has become habitual I want to take a nap LOL

debbiel0

Glad you are off to a good

Glad you are off to a good start! The unknown is the scariest. I hope you are a bit more relaxed now.

CivilMatt

one

Suez,

Very good.

Relax and stay on top of everything.

Matt

Twostepr

Good Girl!

You know, about ten days in, you'll know the "song" of the machine as it's treating you, and you can hum and groan along with it. I tried to pick a song I could sing, to myself of course, I wouldn't want to expose anybody to my singing. But that way, I knew exactly where it was in my treatment by where I was in the song. It's just a way to distract yourself a litttle and help to keep things calm.

We didn't have music in my treatment room.

I totally agree with Darkdancer333, when they unclamp and lift that mask....., it's a pretty good feeling. 

Hang in there Sue.  You're off to a good start. 

Dean54

Hope you get thru the PEG tube placement alright

Think you said that was today and hope you are adjusting well to the rad. by now. It will get better.

Suez39

Peg tube

Thx Dean for thinking of me. Had tube placed yesterday. Was in intense pain after. They pumped me with Morphine throughout the day and night along with nausea meds. They wouldn't let me drink for 2 days!  Horrible. Glad if's over. Tomorrow rads in the morning and first day of chemo. Ugh.. Have'nt even gave that one a thought. But after tomorrow one week down!! Rads are ok unfortunately I have to take ativan 1mg (2 pills) to make it through it. Mask way to tight and gives me slight headache. I deal with it. Only one rad tech comes out to take it off when i'm done but she's too slow. But nothing i can do. Hey Dean what's the Best product for dry mouth? Biotene products not working for me.

SuzJ

Biotene..

They changed the ingredients a while back and it doesn't work much if at all.

 

Get used to carrying a bottle of water, literally, everywhere.

 

Altho, it wasn't treatment that made your mouth dry, that's way too fast. Possibly medication?

nancytc

Hi Suez!

I am so glad you are past the Peg Tube and have the ball rolling on treatments. Theres no shame in taking the Ativan. Its temporary.

For me, the best product for Dry Mouth..and also helps prevent your teeth from rotting while you sleep from lack of saliva (a whole nother big topic!) is Xylimelts. Look up the benefits of Xylitol and research the benefits. It helps keep a neutral pH level in the mouth. Xylitol also helps prevent bacteria from sticking to the teeth. When there is not saliva, you have very little protection against bacteria. For me, they were an absolute lifesaver once the REAL dry mouth set in. Which was towards the middle/end of my treatment. You put one or two tablets between your cheek and your gums of your upper jaw before naps or bedtime, and it forces your mouth to produce saliva while you sleep. Without it, I would wake up with horrible "Sahara Desert" feeling mouth. With it, my mouth would and does now stay damp all night long. In the beginning, I would use two tablets...one on each side.  Now, a year out I just use one every night. My Oncologist told me that 80% of those treated with radiation from oral cancer would have lifetime dental issues. Which also brings me now to asking you if you have been fitted for dental trays to use gel flouride on your teeth EVERY day during treatment and nearly every day for the rest of your life. If not, you need to get on this ASAP.

I also recommended that you get a travel pillow for comfortably sleeping elevated. If you get mucositis (most of us do) and/or also Peg Tube feeding in bed you will find this a very useful tool in your arsenal. I found an awesome one on Amazon. This one supports your chin also, which is a big help if you are a mouth breather while you sleep.  And this pillow was another life saver as far as some comfort throughout the worst weeks of this process. You can find it by searching BCOZZY Chin Supporting Travel Pillow. I didn't want to burden you with all of this info before.....thinking and praying for you.

Your friend,

Nancy

 

 

nancytc

Also, just wanted to add,

Also, just wanted to add, that having a tight mask within reason is not necessarily a bad thing. You do not want your head to move ANY during the radiation or it can accidently target healthy cells. As i lost weight, my mask started feeling a tiny bit loose, and my tech impressed upon me to stay VERY still, as I did have some play. I used the Ativan every day, as it just made me chill and relaxed during the treatment.

Nancy

Suez39

Great tips

Hi Nancy thx so much for the tips you gave me. I did'not ask the dentist for the fluoride treatment trays. Will it help save your teeth? Also will insurance cover the cost? Also for the medicine xylitol needs to be prescribed from a doctor? Sorry all the questions. Want to get my ducks in a row. Taking a test now. Thx so much!!!

nancytc

Hi again Suez

The Xylimelts you can get at most drug stores. Over the counter, and usually in the toothpaste area. You can call around and find out which stores carry it. Rite Aid, or CVS Pharmacy carry is out here on the west coast. It comes in Mint or no Mint. I would recommend getting the no mint, as you may not be able to tolerate the mint as you get further in your treatment.

I cant believe that your Cancer Center did not tell you to get trays and the flouride gel. I am not sure if your dental plan will cover it or not, but its not optional if you want to keep your teeth. I would recomment flossing several times a day for the rest of your life. Also, I bought a water pik, and used it after every meal or snack and it is a lifesaver for oral hygene now as with chronic dry mouth the food does not wash off with your saliva. It just gets stuck there until you floss it or water pik it off. There is also prescription toothpaste that your dentist shoud prescribe you. I will get the name from mine and get it to you. Hang in there Suez   Nancy

Dean54

Glad you got started Suez39

And hope you got over the shock of having the tube and the pain. I never did get used to it, seems like it was always in the way but is there if you need it. Everything will get better as you go along at least mentally.

BeenThereDoneThat

A temporary off ramp on the freeway of life...

Checking back in after 10+ years. I had my 'off ramp' in 2004. Radical neck, chemo, radiation. Roller coaster of good and bad days, side effects, dealing with jerks, marvelilng at amazingly nice people...

Deal with what is in front of you, and know that a lot of people are rooting for you. OK, I look back once in a while, but I am blessed to be here and the 'off ramp' did give me a lot of perspective on life.

Take care and you'll be in the fast lane soon.