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I need some Radiation Mask advice--Please Help

finz2lft
Posts: 43
Joined: Jun 2010

I went for the trial run today, and they put that mask on me, and I lost it. I told them there was no way that is the mask they fitted me with. When they snapped it down around the back of the neck, I just freaked out, and could not handle it. It was so tight around my cheeks. My Doctor is new, and he was so great, he prescribed some Ativan and said to come back tomorrow and do it again. He did not pressure me at all, he so fantastic about it, and told me that I was not the first person that this has happened to. I guess what really got me was that he told me that my cancer was so severe that it would be at least 6 months before I returned to any degree of normalcy. That really upset my whole karma. Any advice??

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Not sure anyone could like the mask, so you're not alone. Mine was not overly-tight, but did make it hard to swallow, so they cut a little clearance away at the base and front. The idea is to make sure you don't move, so it has to fit real snug over your skull. Keep in mind that it's not like you're gonna be clamped to the table for an hour or two. My sessions lasted 20-25 minutes, on average, with the longest probably a little over 30 (on an Xray day). If you can breathe okay, and am able to swallow in between zappings, then it shouldn't be a big deal.

Does it literally bite into your cheeks? Are you a large man? If you are overly-large, perhaps they just don't have a mask large enough.

As for the Ativan- I took a 1/2-tag of Xanax about a half-hour before my scheduled start time, and it did help in a major way. Others also used a similar-med the cope with the rads.

Give it your best shot.

kcass

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

The mask left a waffled effect on my face and was uncomfortable the 1st week. Ativan 1/2 tablet was used for 3 days and the tech cut the eyes out so it was not so clustrophobic. As I lost weight it fit just fine and the 15-20 minute sessions flew by.

Hnag in there, all will go well.

Ed

davidgskinner's picture
davidgskinner
Posts: 81
Joined: Dec 2009

They make those things tight, that's for sure. I tried listening to the technicians' music to distract me at first. I will never like Neil Diamond after that experience. In the end, you just learn to mentally "go somewhere else" while that thing is on. At least I was lucky enough to learn that mental trick. And I had serious waffle head after each day!
You are probably right in thinking that the Dr's comment about 6 months before returning to normal did not help things for you mentally. Everyone has a tipping point, and thinking about things that far out may just be too much right now. My advice would be to forget about what is going to happen in six months and break things down into smaller bits. Maybe weeks, or even days. You may soon find that morning to the evening is the longest time frame that is worth thinking about. And that's OK, because it will get better. You can do it.
This is a great place to come for support, cuz we know what it's like... it sucks. But, treatment won't last forever.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

The mask used to leave a waffle impression on my forehead and cheeks after each treatment. My treatments only lasted 15-20 minutes, and you will get used to it. Talk to your techs, make sure that if you raise a hand, or give the sign, that they will be there. Once you trust them, it'll be easier. After I lost weight, my mask loosened up. I never told anyone, I thought they'd forgotten to do one of the snaps at first. As for recovery time, it will be a long road, and my only advice is to deal with one session at a time, and recover week at a time. Try not to be discouraged by time taken to heal. Unfortunately, it takes as long as it takes, and taking care of yourself and being patient, and positive, provide the fastest track back to health.

best with everything, Hal

MarineE5
Posts: 745
Joined: Dec 2005

Just like the others mentioned, my mask gave me checkered marks on my face. The Children's Hospital is next door and when the young kids would be in their rolling beds ready to get their radiation, I would say that I was " Snakeman ", they would just give a little smile.

Broke my heart to see them have to go thru this. You can do it as mentioned above, ask the Tech's to cut a little piece here or there to relieve the pressure on your nose or mouth a bit so you don't feel sooo closed in. Tight spots normally don't bother me, but that Mask, the first couple of times played heck with me until I put my mind in another place. As mentioned, as we loose weight, it loosens up a little bit.

I would treat myself to the biggest chocolate milk shake after each treatment for as long as I could.

My Best to You and Everyone Here

finz2lft
Posts: 43
Joined: Jun 2010

Where you ever stationed at LeJuene or Cherry Point NAS. I live in New Bern. Finz

MarineE5
Posts: 745
Joined: Dec 2005

Yes, I was, for a short time at both. I'll send you a private message on this site.

Semper Fidelis

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Lloyd...NAS is Naval Air Station...MCAS is Marine Corps Air Station

Hope you got squared away, sounds like you did. It seems much better when you start and have time references to guide you.

Stay in touch, best,
John

sportsman
Posts: 98
Joined: Feb 2010

I do not want to upset your karma any more in regards to returning to normalcy as you once knew it in six months. I am now out of treatment for stage four for almost three and a half years now and am not close to be normal again and according to my doctors never will be. There is what we head and neck survivors call the new normal after this devasting treatment is over with. This is a long hard road and I don't want to mislead you. So far as the mask goes I freaked out when they were making the thing. It took two times for me to go through it just to get the mask made. Once treatment started (35 treatments) I was terrified every time they bolted me down on the table. Through the grace of God and praying all the time I was receiving radiation I got through out and did not have to take any drugs. I pray for everyone I read about on this website getting ready to go through this ordeal. My life as I previously stated is not the same or even near the same but I do get to wake up everyday and see my family and friends. God Bless you as you face this.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Finz,

I know it's not easy to deal with mask. I'm not clastrophibic but it still bothered me at first. A good friend told me to have a "Happy Place" to go, as others here have mentioned here. It really works. Every day before you go in, think of that happy place you'd like to be. By the time you lay down you should be in that zone of thinking of nothing but the place you want to be. Mine was always fishing trips, but whatever you enjoy. Some like to time the songs or count the revolutions of the machine. That just made the time go slower for me. You just need to find that place where you are relaxed. Another thing, 10 minutes before you go in, start visualizing your happy place and take long deep breaths. Hopefully some method similar to these will work. Practice before you go in, but be relaxed by the time you lay down.

Good luck.

Greg

finz2lft
Posts: 43
Joined: Jun 2010

Thank you Greg, I had sent you an Email, so thank you for your advice, I will try that tomorrow. This delayed Chemo and Rads by a day. I am having Chemo on every Wednesday for 7 weeks and 35 total Rad treatments. The Doc said that Chemo-Rad day would be long and I would end of hating it, but he promised me that it would end. Thanks Greg, have a great day. LLoyd

friend of Bill
Posts: 87
Joined: Mar 2010

The mask: very tough but do-able with help. I had the same reaction as you, plus being confined triggered some bad, bad stuff from childhood. I used xanax like others plus a good shot of afrin to help with breathing. They let my wife in the control room which they said was highly unusual so she could talk to me. I took a pain pill before because the table was very hard and I'd busted my rotator cuff. I chose my favorite music. I did some relaxation techniques and tried to take myself to another place. Took the pills about one hour before the treatment. Always scheduled it first thing in the morning so I wouldn't fret all day. I truly know how you feel. At about the 21st treatment, I was ready to bail but just re-committed to my recovery and reminded myself of the reasons I wanted to get well. I hated every minute but am glad I did it, all 39 of them. I don't say this loosely: if I can do, I know you can do it. Use every tool you can find and tell the doc and staff what's up with you. They know how to get you through this and you will.

Vince

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

I think we all have problems at first with the mask, sometime you can get them to modify it a little by cutting out the eyes and mouth, it makes it a little easier to handle. Also you can try and focusing on something in the room, that always worked for me.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

I think we can credit David with the latest terminology (or punk rock song) - Waffle Head.

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Not sure what kind of machine you are using! I was using a TOMO IMRT machine they were able to cut out the eyes and nose for me; it helped alot. Yes, this cancer is no joke they tole me 6-7 months from work too! :)

Charles

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Finz,

Seems you have heap already but I dug up an old post on this and have added a couple of things. Hope it helps.

============
For all about to start radiation with the 'Mask', I thought to start a separate thread as it appears many threads these days are getting too 'crossed' up and lose track of the original purpose or the poster.

Make sure the mouth piece you have has a large enough hole (and clearly cut) to allow easier breathing. The Techies on hand can fix this if the hole is not adequate..

You can ask to have some parts of the mask trimmed if there is too much pressure on any point or area but it should be firm so you don't move and let the rads hit a non-target area. It shouldn't hurt though. Too much pressure around the nose and throat will cause more distress as your body tells you instinctively that your breathing is threatened.

I used a nasal spray before each session to allow easier breathing. You can breath through both nose and mouth at the same time. Learn how to switch between the two and to use both at the same time. This will be important if you start getting heavier mucus build up later.

Learning how to breath is important and also helps you relax as you can focus on something other than the big humming machine. Breath deep and steady and visualize the cancer cells being chomped up like a Pakman or .... just think of something nice.

Hack and spit as much as you can 'before' you get on the table as mucus may increase as the weeks go by. As said earlier , if you feel your throat blocking a little with mucus during a session, you can usually breath through your nose. That's why you are best to practice consciously changing between the two to avoid any panic.

Learn a pattern or relaxation and you will find it will become easier and the sessions will be over quickly.

Music really does help and I used a compilation of classic and classical non vocal music but whatever gets you through is good.

Use relaxation meds if they help and you find it necessary but as with anything, the less medication the better as your body will be dealing with enough.

In the later weeks I rinsed my mouth with a Saline mouthwash and also used a bit of Mouth Gel (Biotene) along with the Nasal Spray as part of the pre-session routine as you will start to get a dry mouth later in treatment.

Other related tips are to get an electric razor (for guys) and get and use good quality 'baby' shampoo and face wash products / solutions (Not Johnson & Johnson). Your skin will become more sensitive. And I do mean stuff you use for infants

I hope the few tips above help.

Regds Scambuster

chris731's picture
chris731
Posts: 24
Joined: Jul 2010

I freaked out when they snapped it on me. It took all I had to lay there with the mask on. It really shocked me when I had a panick attack. But like you, the doctor gave me Ativan. Take it 45 minutes before you go in for treatment. It takes that long for most meds by mouth to get in your system. Close your eyes and concentrate on something. Me, I kept saying prayers and before I knew it, I was done.

Doctors told me the same thing. Six months before you're feeling "normal". Everyone is different when it comes to the side effects and how long they last. I'm 5 months out and most of the side effects are gone. Dry mouth I still have. But it's slowly getting better. I'm on Salagen for saliva. Biotene has helped alot with this. I have the mouthspray, the gel and still use the mouthwash. I would say that after 5 months, I'm about 70% of what I was before treatments.

But the side effects will pass in time.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Lloyd

I sent you an email...

Basically I used Xanax for the first few days, but it zomked me out in the evenings. I drove myself everyday and that wasn't a problem with Xanax. The Xanax just took the edge off of the anxiety.

After the first few days I would split them in half, the quarters.

I only needed that initial week or so and I was used to the scenario.

They also had a CD player and I brought in a disk they kept there for me. I chose James Taylor, haven't listened since though to it.

John

Fire34
Posts: 350
Joined: Feb 2010

That was my first thought also.there is no way this is the one they fitted me for. They were able to shim mine up about 5 mm to loosen it up a little.
They also had a CD player and plenty of music that was just my style. Helped immensely. I was unable to keep my eyse open as the mask was so tight for me when it hit my lashes your eyse had to close.
I got refitted the middle of my third week and when they put the old maks on, I couldn't believe how loose it was, there must have been something between the tables.
I had them turn the music up quite a bit as I tried to drown out the sound of the gun moving around. Still couldn't drown out the thud the door made when they closed it though. LOL
As everyone else had said just concentrate on something other than the mask and it will be alright. I slept thru most of mine Best Wishes & Prayers
Dave

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

John
Too Funny, my music was Luther Vandross greatest hits. I learned the first 5-6 songs and would sing along in my head to the songs. Each song lasted 3-5 minutes and the rad treatment flew by.....Learn to sing, it takes you away from the ordeal....
I haven't listened to the tape since I got through with rads, 4 months!
Steve

finz2lft
Posts: 43
Joined: Jun 2010

I did it today. It took and hour for the test run, and it is done. I thought of pleasant places and it was over. THANK YOU TO EVERYONE!!! FINZ

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

mine is from my arm pits up. I totally flipped out the first time. could not even blink my eyes.Now.... I take a few breaths put my hands in my pockets close my eyes. I have been actually falling asleep in it. So see! it does get better.

finz2lft
Posts: 43
Joined: Jun 2010

I did it today. It took and hour for the test run, and it is done. I thought of pleasant places and it was over. THANK YOU TO EVERYONE!!! FINZ

davidgskinner's picture
davidgskinner
Posts: 81
Joined: Dec 2009

Good job, brother. We all knew you could do it.
Pretty soon you'll be dozing off in that thing!

santa6
Posts: 29
Joined: Oct 2009

I had all the exact same experiences and reactions. At trial I was adament we needed to try something different. I had no interest in doing more drugs. Then a tech suggested we cut out the nose and the eyes in one opening. They did that right there and it was a piece of cake. Did treatment with my eyes open. I am somewhat claustrophobic too - the cut out made all the difference.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I have just been reading all the comments re the mask of stillness. Seems you are all men. Where are the women? I read a couple of posts and said to Nick I bet these are all men lol. If we had more women commenting I think we would have a more balanced perspective. I agree the mask is quite an ordeal but its soooooooooooooo totally doable, even for someone like me who is claustophobic. I wasn't even offered something to relax me and it never occured to me. I had Comfortably Numb playing everyday and that took my mind into another zone. I am almost 5 years out of treatment and getting totally used to the "new me" and loving life. Good luck with the rest of your treatments, it will be over before you know it.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I just put my mind in another zone. It wasn't a great experience - but it went by faster then I thought. As the treatments progressed they cut down the points of radiation so the time on table decreased. I did find myself liking on radiation tech alot more then the other because she moved a lot quicker getting me off that table.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Hey Judy it cannot be that men do not know how to zone out can it? After all they get loads of practice every time a woman speaks to them. Sorry guys couldn't resist lol.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

LOL, I don't think it's really a male/female thing, or a matter of anxiety control or management. You do what you have to do to get through.

I went through treatment as everyone has, but didn't use or require a PEG. I don't think I was anymore tough than the next person, just for me it wasn't an issue.

It's all doable, just different for each. Some need one thing or another, others need something else to help them get through it easier. Why make it rougher than needed if there's something to lessen the anxiety or pain during a particular phase of treatment.

Best,
John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Maybe there is a difference between the sexes. It seems to me (I could be remembering wrong, though) that more women than men do rads without anxiety meds, and more men than women do not get PEGs. Is this really the case? If so, wonder why.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

I can't answer that....seems like the majority of men on here had the PEG, not sure, but seems like most of the women as well.

For me the anxiety of the mask wasn't so much a claustrophobia issue as it was more a restraint or confinement anxiety.

I'm one of those that can't even stand to have my feet tucked into the sheets, LOL...

Also, like mentioned it was just initially, after I got use to the routine in a few days I was fine.

My mother on the other hand freaks out by just having a face cloth over her face. I'm sure it's individual to everyone what their little quircks are.

JG

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

For me, too, it was not a claustrophobia issue - it was dread of being restrained and unable to free my own self. Luckily, I was able to self-soothe (starting with hearing the sound of that huge door cranking closed).

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi all, I finally dug my mask out today and faced it after hiding it away 6 weeks ago. I am extremely claustrophobic and do not like like being restrained at all. Ativan got me thru 95% of my treaments..I freaked out 4 times but good techs helped then and for that I will always be grateful. I took mine out today because I fly back tomorrow and get my scans repeated on Tuesday and I am terrified of the results being bad. So I dug the scary(lol)thing and put it back on my face and told myself that the mask is not a s scary as the alternative. I wish I had known then what I know now. If I have to repeat then give me the ativan but I won't let the mask beat me this time. Tricia..this is my female point of view..lol.

Debbie

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Hi Debbie i just wanted to wish you good luck with your scans, it is a terrifying time I know so please let me know how you get on ok? I shall be thinking of you Tuesday and sending good vibes across the pond to you. Bye for now Tricia

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I know you have a trach Like I do, I will have mine removed in 3 weeks and counting, can you feel your trach in your throat hitting, also, i have a shiley in, i do not tie mine on, i tape it. I can't stand the ties in the shower getting my clothes wet, and it waste alot of time. the ovel plastic has almost caused a hardeness where it is place, also the docotr said should have plenty of room once it is out...can you tell any differecne when it is removed, i can, i want your input please, thanks. Dennis

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I'm male and had an easy time with the mask. I am posting this not to put down those patients that had found the mask difficult. However, for balance, it must be said that not everyone finds the mask a big challenge. For me, the mask looked worse than it was.

My techs kept saying that my mask seemed extremely tight. And I did not lose any weight. On the other hand, my treatment lasted only 3 minutes.

I was taking clonazapam for a movement disorder. This med does have a sedative effect, so I might have been cheating.

I used Flonase, a prescription nasal spray to keep the nose clear. If you have any congestion at all, get something for it. Rick.

santa6
Posts: 29
Joined: Oct 2009

According to my Drs, there has been an alarming increase in the past 5+ years of men over 50 getting head & neck SCC. While tobacco use is a significant factor(never used it once) increasingly it's being linked to HPV - the same virus that causes cervical cancer for women. I had just turned 50 at the time of my diagnosis. I tested positive for HPV

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

I'm going for my simulation and mask creation today. I never thought that I might freak out or it would be that uncomfortable. My wife is a certified Hypnotherapist. If I have trouble, I'll ask her to make me a self hypnosis CD to help me get through it. I can usually get into a state of hypnosis to where you can do near anything to me and it won't hurt or bother me.

RushFan's picture
RushFan
Posts: 217
Joined: Aug 2010

I too was not too happy to learn that I would have a mask. I was up-front with my Rad Oncologist and he was super...said I would do great, if not...he would give something to help me relax.

Ryan, one of the Rad techs, is a super guy as well and he really took care of me. Everyday I would go in for treatment I would tell myself " this sucks, but this mask is going to save my life". I also thought about my wife, kids and started each session with prayer.

I also really liked some music playing for distraction.

Best to all,
Chuck.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Hi, it may be different in the states, but here in Uk you are in a different departmenr when they make the mask and I couldn't have earphones in for obvious reasons. So just warning in case it's the same over the pond. Once they had made the mask I had to return at a later date for the simulation part.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

So I just got my mask made. It actually wasn't all that bad. I used some self-hypnosis techniques to relax and the Radiation Tech had to actually shake my shoulder to let me know when it was all done. She was pretty surprised as to how relaxed I was throughout the whole thing. I can put myself into a hypnotic state pretty quickly.

www.caringbridge.org/tres/images/photos/2/0/2/9/202994/l.lhvBpzczoffOHJBX-jpg (replace the - with a . before the jpg in the URL)

Nope - Can't directly put in images. Have to post the link to the pic. I think it's more like a super hero mask. Call me Spider Man!

You know if anyone is having trouble relaxing with the mask, my wife might be able to help. She's a certified Hypnotherapist and does custom hypnosis sessions that you can download as an mp3 or wav to burn to a CD. I can give anyone her website link if they want.

Good luck to all my fellow masked super heroes!!!

RushFan's picture
RushFan
Posts: 217
Joined: Aug 2010

Doug, I tried to access your CB site (I have one too)with no luck.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

I can make it easier... http://www.caringbridge.org/visit/dougbernstein

That pic is on the most recent journal entry.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

I got it to work, like Doug said, replace the -jpg at the end with.jpg

Best,
John

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I too freaked out when the mask was made then again at the trial run and then again for the first day. The MRI also freaked me out. The funny thing is before cancer, I was never claustrophobic. I needed Ativan for the first week and also my favorite music. I took the Band, Mark McLay, Oh Brother soundtrack that first week. Eventually I got used to it and a couple of times even fell asleep.

What I realized later is that the freak out had nothing to do with the mask. It had everything to do with outcome. The mask triggered my fear and gave it a target. I am scared to death so it must be the mask! No so. It was the fear of not surviving the treatment.

Once I got my head around that and stopped focusing on outcome, I was never afraid again. Indeed the PET scan was a breeze (fell asleep there too).

I hope this helps.

Best,

Mick

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

From the start I hated my mask. Getting it to form was a bother some ordeal. The mask was tight and I did not seem to have much problem with it the first week. It was the weeks that followed with the throat getting sore and my inability to swallow. I was producing so much phlegm that I was unable to swallow that I literally feared that I would drown in my own spittle. I was offered drugs and for some unknown reason I did not want to take the drugs. The chemo was already effecting my decisions. Never before did I refuse a good drug. As long as it was legal. Yet for some reason I did not want to be out of control while under drugs. I found that if I concentrated on breathing through the nose as the phlegm continued to collect in my throat made it easier to handle mentally. After two weeks I was not able to swallow any of the bile that I created and needed to carry a spittoon or a spit cup with me where ever I went.

team stevens
Posts: 46
Joined: Sep 2010

man, i thought i was the only one that felt like that.in my case, i have a trech tube & it was in during my rads. so when the saliva built up in my throat, it began to come out through the tube while i was on the table!! it was easier for me to breathe with the trech plus the techs had me at a 5 deg angle. it didn't hurt that my rad onc made sure i had taken an ativan about 45 minutes before each treatment

rozaroo
Posts: 667
Joined: Apr 2010

I have never been into taking drug's but the Ativan sure did wonder's for me!

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

My drug of choice for the mask anxiety....

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

I have only worn it twice so far, once for the fitting, then once for an x ray. I start my rads tomorrow so I'll be wearing it for real! It makes me nervous b/c I feel like I need to yawn and I can't and I feel like I'm being trapped. I really want to ask for some medicin b/c I feel like I'm going crazy in there!

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