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#98045 06-24-2009 10:29 AM
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Well, THAT was one of the most unpleasant experiences I've had so far (besides the surgery...)! Got the mask made today in preparation for IMRT, which will start in a couple of weeks. Definitely thinking Valium for the treatments (x30); I had thought I'd be stoic and meditate or something while I had the mask on, but now I know better -- it's NOT going to work, being bolted to the table!

Anybody else out there with claustrophobia who had to do the mask? How did you deal?


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
mightymouse #98047 06-24-2009 12:30 PM
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Chris,
You'll get used to it quickly and as you lose weight, it will loosen up as well. Look on the bright side. It's insurance that the least amount of healthy tissue will be destroyed during treatment. I was prescribed Zanax and did meditate a lot during Tx. I slept through many treatments towards the end.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #98055 06-24-2009 01:29 PM
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Chris,
My mom went through tx's on ativan, she is extremely claustrophobic! do what you need to do to make it through!
I was shocked when my mom told me what she had to go through, I asked the techs if I could see what was happening. I was with her when they put her mask on and snapped her to the table. NOTHING could have prepared me for what I witnessed. It gave me a whole different perspective to what she was enduring. You CAN do this!
There are several people who have posted about their issues with the mask, use the search engine to the right and type in mask and you will see lots of stories!
My mom still talks about the mask, and she recommends that if you are put on ativan, don't wear flip flops when you are on it! she smacked her head the one day because she was so unbalanced--of course being dehydrated didn't help!
In case you are wondering, she is doing great today, actually helping me have a beautiful high school graduation for my daughter! The mask works.
Good luck,
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
Donnarose #98056 06-24-2009 01:35 PM
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Thanks, Gary and Donnarose, for the words of encouragement. Ativan sounds like a place I might start...and try for some meditation at the same time. I just hadn't expected it to be so tight...had heard about the bolts, but c'mon, these are industrial! I'll try to keep a sense of humor about it...maybe use it for Halloween when I'm through...

I'm glad your mom is doing well, Donna. That's fantastic! I will search for more stories about the mask.

Thanks-


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
mightymouse #98059 06-24-2009 01:54 PM
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They're not really bolts - they are snap fasteners and the techs can have you out of the mask in seconds if need be.

Ativan also helps with nausea a little. It can also be taken sublingually as well (under the tongue).

I am still going to make a Chia pet out of mine...

I had a second one that wasn't right, so they gave it to me. I hung it in the yard and the UV disintegrated it.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #98060 06-24-2009 02:12 PM
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Chris,

I could feel my heart beating the first time I was clamped down but the next time they played loud music and it never bothered me like the first time again. Obviously I didn't like it but that "I gotta get loose from this thing" only lasted the first time. Measurement days (every Monday) added about an extra 10 mins or so clamped down. I also had to hold a rope in each hand connected to a strap around my feet to keep my body as rigid and motionless as possible.... and we'll have fun fun fun till your daddy takes the T Bird away.....


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #98071 06-24-2009 05:20 PM
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Wow, the rope sounds like an added bonus feature!

I have my own bonus as well: I get to hold my mouth open with a block between my teeth holding my tongue down so the radiation will go directly to the roof of my mouth. The block was shaking so hard today I had to hold onto it with my hand (and even that didn't help much). Maybe that's where Ativan would help some, too...

The Chia pet sounds like a marvelous idea, Gary. I can picture it now...

BTW, David, did you ride your bike during radiation? If so, how much? I'm just curious...


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
mightymouse #98074 06-24-2009 06:51 PM
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No ropes for me, they had long rubberband type things I had to hold on too.

Chris,
I posted back in Oct about me and my mask. I didn't make it through the fitting. I had to quit and go home. I was crying when they let me up. I thought I would never be able to do it. Next day, me and the Ativan made it through it. The techs also cut the eys and nose out of my mask so I could "breath". They showed me how to "unbolt" myself if needed. They showed me that they had a monitor and if I couldn't make it to just wave my hand and they would be in there in seconds. I never had to do it. By the last weeks of rads. I stopped taking the Ativan. I didn't need it anymore so why bother.
I left my mask, I didn't need it. I wont forget.
You'll do fine.
Amy


40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
mightymouse #98076 06-24-2009 06:54 PM
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Simply stated: Xanax was my friend.
Also, the more tx's completed, the easier it became. I kept mine also, so I am with Gary and Chris,... Chia pet!!!


Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
mightymouse #98081 06-24-2009 07:23 PM
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Bring your own music....I was able to meditate...near the end it was a little crazy but it's doable...You will be fine!!


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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