Went to get fit for my mouth splint to hold my tongue in place and my jaw open just right yesterday. Will pick it up and make sure it fits and works well on friday morning. Then friday at 3 pm will go for my planning appointment for radiation where they will make the mask and take a ct scan so they can plan the attack.

After that they say 3 to 5 days after will start radiation. So a monday may 31st or sooner will start radiation.

Pretty nervous and a bit scared, but I am sure I will make it through this.

Also supposed to move on the 1st of june, so wish they would wait till after the move and we get all settled, but cancer isn't kind nor considerate of life, so i am stuck.

This is a very nerve wrecking time in the treatment process. Hurrying up to wait for the next procedure. Even thought it is not the ideal time to move, generally speaking, the first few weeks of radiation are not so difficult as to make moving impossible. We are all here for you. Just keep putting one foot in front of the other......one step at a tine. Good Luck

I couldn't have said it better than Carmen. I'll be thinking of you tomorrow. The mask is a drag. There's no other way to say it. I found that listening to music or an audio book during treatment was a lifesaver for me. Had to balance mini speakers on my stomach as they wouldn't let me use my iPod earbuds, but it was worth it.

Keep us posted!
D2

The Moffitt radiation nurses had a boom box in the room and encouraged bringing our own CD's. There was also great incentive to do that unless you liked their country & western ones!

I remember my wife coming into the radiation room for my first rad and seeing them clamped me down her knees buckled and she was helped out of the room never to return again.

You have been through so much already. I'm sure your a real trooper. I don't think I will ever forget the day I got fitted for the mask. A tranquilizer taken before the fitting would have been nice! I just had no idea of what to expect. They need to form the mask very quickly while it is still warm. All in all, I was out in 15 minutes. Good Luck, post back & lets us know how it went.

Appointment went ok, but mouth stint/appliance is very uncomfortable to use while laying down, and the mask forming was a bit creepy, but i dealt. I Will start my IMRT 30-35 treatments on wednesday june 2nd. So at least I get to get moved in before starting.

Does anyone know of any good meds, rinses, or vitamins to take that help reduce side effects from radiating the tongue and neck?

Or anyone know of any exercises they did while going through radiation to reduce stiffness and trismus?

Sounds like you have already been through a lot . The radiation will probably be troublesome for you. I did not have any radiation of my mouth, just my neck. I used a cream, Biafine on my neck that worked beautifully. I never peeled and unless you knew I was having treatment you would not have known. The Biafine is not greasy, my whole neck actually looks better. The mask thing bothered me some, especially farther down in the treatment when I would cough etc while in treatment. I was initially surprised that during treatment, you feel nothing. The techs played an FM station while I was on the treatment table. I figured out my time was about three songs plus ads, haha. I would tell you to eat as much as possible now. Even though I had no lymph involvement, my RO increased the field of my treatment of my voice box to catch the lymph nodes adjacent. He called it microscopic treatment for anything that might not of shown up on my initial CT. Good luck. I think the hardest part may be behind you. I will start my after treatment scans soon and praying nothing shows up. I basically have been in limbo all year so far. Time to get better and have some fun.

I am receiving radiation for microscopic cells as well. They removed the lymph node that had cancer and they removed all of the cancer from my tongue. But because of the perineural invasion, how deep the tumor went in my tongue, and how much cancer was in my lymph node they are choosing to go with radiation.

Bethers - there are a lot of good products out there and of course everyone's experience is different. I used just about everything my RO and her excellent nurse prescribed and it was still tough.

For eating (i.e. the liquids, which was all I was on for several months) I would first use viscous lidocaine. It's a gel that you hold in your mouth to dull any sores you might have. It works, well, it helps, I'd say. Impossible to get it really down in your throat for any lesions down there, alas. But it's something.

Caphosol is a saliva substitute that helps moisten the mouth during treatment. Very expensive though.

There's a rinse that comes as a powder in a plastic bottle to which one adds water. Trying to remember the name... hmm... it's not coming to me but if I remember it I'll PM you.

If your neck blisters, Silver Sulfadiazine is great. It really helped me.

Don't be shy about asking for painkillers. If you're in pain you absolutely need them and your docs should be prescribing them freely. I found plain Oxycodone worked the best for me, at least eventually, as Percocets (Oxy + Acetominophen) are quite large and hard to swallow. I also used a Fentanyl patch during the last couple of weeks when the Oxys weren't enough. But ask your docs and see what they say.

No question, radiation is a bitch and the immediate aftermath no better. But you'll get through it without a problem I'm sure! So good to hear you can complete your move before you start. That must be a huge load off your mind.

Keep us posted all the way, okay?

D2

I also recommend viscous lidocaine. It only works a short time, but it worked wonders when taken before eating or drinking after week 4 or so. Some use "magic mouthwash" which is generally locally made. Whatever mine was it burned so I did not use it. Instead I used salt water/baking soda which was tolerable when even water started to burn. (there should be recipes around here)
Best

M

I also used Biafine on my skin and highly recommend it. It is prescription so ask about it. As to vitamins and supplements, I think they generally recommend you stop taking all those things. Check with your RO on that.

Take care,
Eileen

I was told by all of my Drs to keep taking centrum daily.We can't eat a lot of foods that contain the needed vitamins and need the supplements contained in these.

I'm in Radiation therapy right now I started April 28 an the firs side effects really started to show up the week of May 10th. By the end of the week May 13 th I had last my voice I am producing Larg amounts of Phlem. I go through almost an entire box of tissues or a roll of paper towels. I'm finding it difficult to sleep. I'm good for the first couple of hours, then after that it's every hour I'm awake.

The week ending the 21st I needed to get a patch for teh pain. My throat is very raw and sore.

Tom,

Hang in there.

Everything you are going thru is 1000% normal. Swishing seltzer water helps breakup that crap. I walked around with a small Styrofoam cup in my pocket and spit in it all day. GROSS GROSS GROSS but better than anything else I tried. Unfortunately things may get worse from here until about your 2nd or 3rd week post Tx but I predict that by July 4th you will not only be celebrating the 4th but you will start feeling a lot better.

Beth
I wish I had found OCF back when I started my radiation TX. Instead there was just our waiting room cohort of patients watching each other get worse every week. Take a look at these posts and see that all of us made it through radiation.
It seems like forever when you are doing it, but within a year you will be the one posting to a newcomer about how you survived the Radiation.
In the meantime, as a diversion, you could Think about what you want to do with your mask, I posted a link a while ago about an art exhibit made entirely out of recycled radiation masks. Others mount it on their wall as a "trophy" or "award". Others crush it, ride it over, burn it, shoot it, bury it or just leave it behind at the TX center.
Good luck
Charm

Hi Beth,

I had trouble with the mask my first time through radiation. I had a panick attack and started to cry when they clamped me down for the first time. So they pulled the mask off anf cut the area over my eyes out. That felt so much better! I could open my eyes and see things normally instead of through plastic mesh. Ask if they can do that for you.

As far as treating your skin from the radiation, I tried Biafine but it felt like it was burning my skin. What worked the best for me was Palmer's Lotion with Cocoa Butter and Vitamin E. That was recommended by my plastic surgeon after surgery to lighten scarring. I continued to use it after each radiation treatment because it moisturized my skin so well and gave me such relief. My radiation oncologist says that also helped prevent scarring from the radiation. The area of my neck that was radiated went back to my normal skin color after treatment ended and I never had that leather look. I swear by that stuff and will be using it again with this next radiation treatment.

Good luck to you. I'll be thinking of you and keeping you in my prayers.

You have me laughing as usual with your words about our Lone Ranger apparatus. Only you Charm.

I found it very helpful to wrap my teeth and gums in gauze. It made it easier on the hot spots.

Do you have any aloe plants at your place? My daughter cut off a leaf from the aloe plant and rubbed it directly on my skin as soon as I got out of radiation, before I even got in the car to go home, and I had hardly any burn at all.

Like thay have all said everyone is different. MY skin never burned, but I had a horrible time with everything else. Here I am just 4 months later, eating all by mouth, and mowing the lawn. When I look back on those times during rads, I never thought I would be doing normal things again. I still get really tired, but I stop and rest and get right back at ti later. You can and will get through this and we are all here to help you do it.