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#19850 03-07-2006 06:28 AM
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Deborah,

I hated the mask at first also. I have it mounted now on a nice piece of wood and I have it displayed on a wall in my office. It makes a very good conversation piece. It's kind of my "badge of honor".

Anyway, when I first had my mask made it was solid. I almost had a panic attack while they were making it. I asked the tech's to cut out the eyes, nose, and my mouth area. After that it was not so confining and I was able to make it through all of the treatments.

I would lay there and listen to the "machine" work and imagine all of the cancer cells that it was killing. That was my focus.

Regards,

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19851 03-07-2006 07:15 AM
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Hey John, I have my Mask too. They asked me if I wanted it to put a plant in...(think they were joking, of course) but it is my "badge of honor" too. I watched them soften it in a skillet filled with warm water. Then, they put it over my face while warm and shaped it to my features. They cut out eyes, nostrils and the mouth as I had to bite on something they called a lollipop....to keep my tongue from moving during the treatment. While it is all well behind me, and I was never a smoker, it was quite an experience to have to go through. We are all brave souls who have been to "hell" and back and a lot wiser for it all...Prayers to all, Flo

#19852 03-07-2006 09:46 AM
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Thank you so much to all who responded. We just returned from radiation and chemo and he did fine. As you suggested he took ativan and they cut a hole for his mouth and that made a world of difference. He has a long way to go but at least he's on his way to being cured.

#19853 03-07-2006 02:08 PM
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I want to make mine into a "Chia Pet" but I haven't figured out how to glue the seeds to it yet. It's pretty slippery stuff.


Ativan is actually good for nausea too. It can be placed in a suppository (like compazine or prep H) and applied rectally and also under the tongue, sublinglily.


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)
#19854 03-07-2006 03:24 PM
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What interesting posts. John had a really tough time with the 1st 2 tx. in the mask, but he decided to count each buzz from the machine and by the 4th tx. knew how long each shot would be and where it would move next. He just counted his way through every treatment. We also have his mask. Our 22 mo old granddaughter loves to put it on and run around yelling "BOO". Deborah, I am pulling for you both as you go through this. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#19855 03-07-2006 05:20 PM
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My 7 children and (at the time) two grandchildren, husband, came with me to my last radiation appointment. The rad techs offered me my mask and I FORCEFULLY threw it in the trash can right then and there. I hated that thing and had no desire to take it home. I also didn't want my kids to see it, ever.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#19856 03-08-2006 07:02 AM
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I'm surprised these masks aren't conidered hazardous waste considering how much radaition they went through. I wouldn't have wanted it, but no way was the hospital allowing mine out the door. My sessions only lasted 5 minutes but I suffered through every one of them. Years later they tried to do an open MRI on my head which required an open mask. I freaked out. I never got used to it.

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#19857 03-08-2006 08:09 AM
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I got my mask as a souvenir. I still kind of see it as armour in the war against the cancer.....I can't really see hanging it in my office or mounting on the wall anywhere, though. One of these days I'll decorate it somehow and then maybe....love the chia pet idea!


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#19858 03-08-2006 08:11 AM
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oh and by the way, I get so annoyed at my RO when I hear other people got to have the mouth opening cut out. I *begged* for that because the mask pushed my lips against my teeth in a way that I'm sure created worse mouth sores than needed to be there but my RO said they couldn't do it. It also made the whole thing much more claustrophobic....


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#19859 03-08-2006 10:01 AM
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the good ol mask.........it was so unpredictable as some days it fitted fine & i didn't have to go through any anxiety attacks but other days it was so tight that i'm surprised i didn't faint..

towards the end of the treatment i figured out that the way i tied my hair actually made a difference since the mould was done with my hair loose....

i didn't take any medication as i wanted to imagine & visualize the cancer cells being destroyed...some might think it's silly but i'm strongly in favour of mind over matter & placebo effect theories....

some meditation techniques like focusing on your breathing as it goes in & out assists in relaxation & calming down but ofcourse in that scary environment it's just difficult to focus on anything else....but it's still worth giving a try

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