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TomHD Offline OP
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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.


51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
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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!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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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


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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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 - cry

Good luck


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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TomHD Offline OP
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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.

Last edited by TomHD; 01-26-2009 11:26 AM.

51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
Joined: Sep 2008
Posts: 489
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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


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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Posts: 716
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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.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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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.


Last edited by Charm2017; 01-26-2009 11:58 AM. Reason: correction

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2008
Posts: 507
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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).

Last edited by DonB; 01-26-2009 01:02 PM. Reason: typo

Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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TomHD Offline OP
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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.


51 years Old. Non smoker. Light wine (well in a few more months). T2N2bM0 SCCHN Base of Tongue. Ripped 33 Lymph Nodes via surgery. 35 TomoTherapies Total, 1 Chemo each week. Cysplatin. Last treatment 2/18/09.
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