I am not claustrophopbic, but now that I can't talk and have a lot of spit, I'm a bit worried about staying the 20 minutes strapped into my mask during TomoTherapy.

What is the best way to stay clear for a 20 to 30 minute period of time?

Has anyone had this type of problem? Input appreciated.

I would blow the mucus / spit up through the hole in my mouth piece with a strong puff of air - toward the end it would gross the tech out when I handed him the mouth piece and it was full of mucus. You figure out how to trap it in the back of your throat without swallowing or choking on it as well. You'll amaze yourself with what you will come up with. Plus, if it gets too bad during treatment, your nurses are always watching you so you can always alert them in some way and they'll come in and rescue you. I would have a tissue in my hand and would have that ready for as soon as I sat up after I was done so I could drool right in to it. I also had a suction machine that I used for a little while at first and would use that right before I laid down and right after I sat up.

Just have them crank up the music. I had treatment at 6am and at the beginning, before side effects were too bad, would almost fall asleep. I would count the rotations the machine made as the sawing noise rotated around that way I knew when it was almost over. Good luck with everything!

Tom

I was able to stay clear long enough for my treatments by using a saliva replacement before I went and then right before I went to the treatment room I would go to the restroom and clean my mouth out good so that there was no mucous in the back of my throat. If there was I would gag and could not keep the mouth piece in. The last two weeks especially a small sip of water just before helped and they always go the mouth piece wet before I used it.

Good luck and know that it does end.

Patty

TomHD

I carried a "spit bucket" with me to the radiation treatments. (actually just a two foot cylindrical igloo type screw on lid cooler) and several cans of seltzer water. I would swish and spit while waiting, and then when they finally did call me do one last rinse, spit into the bucket and close the lid. That would last me about a half hour. It was a major milestone when one month after TX was over, I downsized to a "spit cup" (one of those screw top large coffee travel mugs). Depending on the volume of your spit and mucous, these travel items are very handy (the one bathroom off the waiting room for radiation was often occupied by nauseous patients and my wife wouldn't let me spit on the floor -

Good luck

I've heard the seltzer water does help quite a bit. I'll run out and get some today before my treatment and try it out.

Charm the bubbles did not bother your mouth?? I tried a sip of 7-up this week and I did spit it out on the floor - good thing it was my floor.

Patty

My txs were 845am. I would wake up early in the morning and I would drink a cup of hot tea & honey. Then I would drink a VHC then take a very long shower about an hour or so. It would take me that long just to get all the mucous out...I even brushed my teeth in the shower. I would douse my mouth with Biotene spray and chew on the Biotene gum until my tx started. I was able to keep it under control for the 10 minutes or so. I did this routine all through out tx and for about a month afterwards. This all seemed to work well for me...of course all day long I would spit and spit and spit...and yes a lot of gagging involved too!! I thought it would never end.

Patty

You know, I don't know now. I don't drink seltzer water any more just plain water. Actually the bubbles in the plain seltzer water were the only thing that cut right thru the mucous and held it in suspension so I could spit out both the mucous and seltzer water. Don't know if I could have swallowed it as despite going through almost a case a day of the cans (cheapest generic store brand in cans), I very rarely drank it. Just swish, spit and rinse.
Funny, it was the Magic mouthwash that burned my mouth despite two reforulations.

Tom,
I didn't have a problem with my spit, but I did have Tomo.
Hopefully there is someone on the forum who has had Tomo and also had your spit problem.
If not you might want to discuss this with your RO and the Tomo Tech since Tomo can take a bit more time.

After the tech did my initial laser/manual mask and bed alignment, It took about four minutes in the donut for the CT phase, then I came out of the donut for about five minutes while the computer crunched the numbers.

Then it took a few minutes for the Tomo to re-align the bed, and the tech to double check everything and leave the room.

Then I was back in the donut for about ten minutes. There seemed to be a tilt after about six minute that it seemed to have problems with and some days it seemed to take it a few tries to get it right.

The collimator on the Tomo is noisy - reminded me of Darth Vader - but it is the best.

If Tomo time is tight at you CCC and you have boost your last week to just a few areas, they might run the boost on a standard IMRT, or if they have the newer technology on a single-arc system (less that two minutes on a Varian Rapid-Arc system).

Well, yesterday was no problem. I just breathed slowly and deply and the mouth guard actually helped more than I remembered. We'll see what happens in another two hours on my next time through. Number 20 of 35.

Good to hear that it was better Tom. I would close my eyes before they put the mask on and just remove myself from the room in my mind. I always tried to think of something else that would not set me into panic mode since I don't do small, closed spaces well. I once passed out in a crowded theater lobby. Good luck.

Patty

I guess I'll handle these just fine. I just make sure to rinse before going down and clear out before going in. Then just breathing exercises do the trick. They also lowered my gown a bit to make sure nothing was between me and the mask, as there is a tight space between my adams apple and the mask. The one or two millimeters this bought me really helped. It was getting tight.

TomHD...I just came across this thread. How are you doing with your treatment?

Surprisingly well. I have one chemo and two radiations to go. SInce this is a three day weekend, I have three days to heal before the last two bolts hit me.

The chemo has been pretty kind to me so far. Weary, but seem to take it quite well.

I'm planning on staying on the tube feeding for about 10 days after the last treatment before starting to migrate back to real food. I'm thinking that should give me enough time to heal to be able to eat soft foods. As soon as I can get 100% on food, I want to yank this PIG outta here.

My goal is to be on real food 100% by the second or third week of March. When do tastes start coming back? I can already taste sweets (as per Apple Juice), but I'm be curious when food is going to start tasting like food again?

I wish I knew the answers to those questions. I have not had the same treatment as you. All of my treatment has been surgical. I know there are many here who have had the same tx and I'm sure they will able to answer your questions.

Good luck to you. It sounds like you have a great outlook and we all know that is very important.

As you can imagine taste can return differently in each of us but for me I posted about an improvement about 4 months out and then again at 5 months post Tx. I really didn't see much in the way of improvements again until 15 months out and then again at about 24 months and it's held steady since then. I am pretty much back to normal but not 100%.

One thing that I did was overestimate my recovery. For example when I was just 4 months post Tx I think I said that my taste and saliva were about 90% back but as time went on I realized each time I saw an improvement I still felt like I was 90% back so I guess I was wishfully thinking and wanting my recovery to be better than it really was but it's hard, for me anyway, to put a percentage to any phase of my recovery because I can't remember what 100% was like anymore and I don't know how much more it would take to be there. Ninety percent sounds a lot better than fifty so I'm sticking with that.

Tom,

Expect things to get worse before they get better as far as taste goes. It may not, but be prepared. I'm about 6 months out from treatment and I still haven't gotten all my taste back. Some foods are good, but others... nothing at all, or they taste good for a few bites and then nothing.

Now, I also had a partial glossectomy and lost a lot of tastebuds, so your results may vary.

- Margaret

I am just about 12 months out of the Rad tongue implants. I have no taste except for the 1st taste of anything, this even goes for coffee. I have no saliva and won't have any in the future. I like an honest Dr that tells it like it is . No holds barred.

Right now I don't have any taste at all, except that I taste the saline wash that I'm using, but before this last surgery I was also having the 'First Taste' syndrome, where I taste something, but repeated spoonfuls have no taste, something in my system having shifted that taste to the "background - ignore' category.

It sure is different to read of someone having too much spit for a problem. LOL Wanna trade for an extra dry mouth?? I admire people with spit if that makes sense at sll.

Actually, that's my problem right now -- Despite lack of real saliva, I am still getting secretion drainage into my mouth (which I can't swallow, so I periodically have to sponge or suction) -- When I have the excess freshly cleaned up, I can try to talk (finger over trach hole) but the stuf quickly comes back and I get a little frustrated.

Too little or too much -- Seems to be hard to get it right, nowadays! <grinz>

I go back and forth. Sometimes I'm literally drooling from too much spit, then at other times I can't get my throat wet at all and need some Biotene mouthwash. At night I always wake up with the dryest mouth and try a sip of water to help. I've had three days to heal right now, but still hurt in my throat everytime I swallow - which - BTW - I'm forcing myself to keep up on my swallowing, so probably a bit of a masochist there.

Interesting that yawning REALLY hurts. Not sure what that one is coming from.

If you run the same course I am, there will be a few more surprises with the mouth , throat and everything in between. Lets take off the gloves and get serious with all of these problems. Time to kick butt!!!

Keep on opening the mouth as if to yawn -- That will keep trismus at bay!

Tom...
Daily you need to open as wide as possible and hold it for a few seconds, then repeat it a few times. Stretching like that several times daily will keep you from getting trismus. I have it and its terrible.

Keep swallowing no matter how bad it hurts. Thats another very important thing. If you are able to chew, even eatting jello, yogurt, soup, or pudding do it even if its uncomfortable and alot of work. You dont want to lose your ability to swallow and have to relearn how to chew.

I see you just finished tx, congrats! In a couple weeks you will slowly start to feel a little better. Rest and hang in there, you are on your way to recovery now.

Tom,

Most of us suffered our worst for a few weeks post Tx. That is normal but hang in there the worst is almost over.

keep on stretching, sometimes it felt like parts of my mouth were ripping...and other surprises also hit me...as time goes on it gets better.

I found that I could control my yawning so I only opened my mouth as far as I thought I could without tearing my skin, at least that's the way my skin felt. I also think I got some benefit of firing the muscles that were holding my yawn back if that makes any sense.