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How to overcome Radiation Mask fear? or unable to breath?

edbravo's picture
edbravo
Posts: 62
Joined: Feb 2014

Hi everyone, its me again. I've just completed my first chemo today but was unable to get my first radiation because either I had gain and put on 3kgs or I just have this feeling and fear that I am unable to breath. Therefore would greatlly appreciate some advice on "how to lose 3kgs" fast at the head and neck within 3 days and how to overcome this fear of unable to breath? Would appreciate your kind feedbacks. Thank you. Laughing... so far 1st chemo was fine and i do not feel anything strange so far.

lornal's picture
lornal
Posts: 268
Joined: Sep 2013

I had 30 radiation treatments - and I was medicated for each one.  When the mask was made - I actually 5 valium just to lay down and let them do the measuring in the CT machine.

Ask for axiety medications  - something that you can take multiple pills at the beginning - and reduce it as you go, if you can.  There are some that wear off faster than others.  I started with valium that lasted longer, and then was swtiched to something else. 

Don't abe afraid to ask for it, many of us here used meds to get through this.

edbravo's picture
edbravo
Posts: 62
Joined: Feb 2014

Thank you for the prompt respond. How did you feel after taking valium? Did you manage to breath better or jsut doze you off?

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

edbravo,

For me it was 1 Lorazapam 30 minutes before show time.

For each of us it is a whole procedure.  For me it was magic mouth wash in the  parking lot, a pee break, a swish & spit, rub my face and arms(getting ready), mask time , music (60’s – 70’s rock), watch the line-up lasers, count , pray, listen. 

You can also ask the techs to talk to you.

You can stop anytime and start over.  I did once during week 6 or 7.  My procedure all over again.

I never liked it, but I loved my techs and came to find it interesting.

Happy masking,

Matt

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

Once  the anxiety is calmed down the breathing will become easier

CM

catluver96's picture
catluver96
Posts: 73
Joined: Jan 2013

My first mask (starting new second mask rads now for brain) included mouth opening wide enough to insert a molded stick piece to keep my tongue in position. Because of nerve damage, my mouth was closed around it . I found if I manually opened left side a bit, I could feel air. I focused on that.

If you can, I agree on  sedative. I'm extremely sensitive to them, so I couldn't get relief in that way. I did go through motions of taking a tiny chip each morning of a very low Xanax...hoping it would do something in some small way.

So if you can.. take advantage! 

Also people here are outstanding support. So lucky to find. Hang on to them and this support group.

They are in our corner through it all. I'm so grateful to have this place to come to.

Vicki

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

Like Matt, I took a Lorazapam everyday a half hour before rads....so I was very relaxed by the time they put my mask on.  The only drawback was I had to get a ride to and from radiation....hubby was glad to do the rides.  I'd get home and sleep for a couple of hours, as the drug wore off, then I was fine after.

p

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

Does your mask have the eyes and mouth cut out? My first mask was cut-out and I did fine with it. The 2nd mask could not be cut. I had it on during a 90 minute planning session in an MRI machine and totally broke down from anxiety when they finished. It was so tight the day they made it but when I went to use it, it seemed to fit fine and I had a xanax so had no issues. 

thennies61's picture
thennies61
Posts: 213
Joined: Jan 2014

Just wondering how do they make the mask?

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

Hi Thennies

Making the mask is alot like getting a warm facial.  They soak the thermo-plastic mesh in very warm water, till it is soft, and then they drape it over your face while you are lying on a table with your head in a little headrest.  It hardens and shrinks as it cools, and they press it down and manipulate it to make it very form fitting.  For me, the fitting process took longer than did my later radiation treatments, and the warm mask kind of freaked me out a bit.  Believe me, it does get easier to wear the thing, with time.

Deb

edbravo's picture
edbravo
Posts: 62
Joined: Feb 2014

Thank you everyone, appreciate your feedbacks. I was wondering if cutting out some parts of the mask will effect the whole treatment?  

CEMunger
Posts: 15
Joined: Jul 2013

Ask your techs if they can cut out areas around your mouth and/or nose. If they don't know, I'm sure they'll ask your Rad/Onc Doc.

 

donfoo's picture
donfoo
Posts: 1316
Joined: Dec 2012

There are some good ideas here, from getting the mouth and eyes cut out, taking some meds to take the edge off, some listen to music. Don't feel bad as like everything having to do with cancer, everyone is different. Some have zero issues, others are having panic attacks every time. Just do your best to stay calm, breath nice and steady, close your eyes and think about being on the beach or in the woods. Good luck.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

For me please....

I too had bad anxiety with the mask.. Onco, prescribed Xanax for me and that took the edge off. I could still drive and everything, so it worked great.

Actually after the first day, I started pinching them in half..., by week two, I no longer needed them.

One I was used to the routine I didn't need the meds any longer.

I also had a CD that played... James Taylor.. Best thing with the music, each song is 3-5 minutes long, so you know exactly how much time you have left..., it's a great reference point.

Best,

John

CEMunger
Posts: 15
Joined: Jul 2013

Make sure you have a ride home and medicate. If music or audible books are your thing, take your player and earbuds with you, too. I found I fell back on child birth breathing. (four counts breath in, four counts exhale, repeat)

Find whatever it is that sooths you and do that!

The techs are usually beyond fantastic. Let them help. 

There is absolutely no right way or easy way to submit to being locked down. If it helps, once you're there, it goes fast! and bam, you're up. 

I wish you all the best! It is not easy!

Carol

Duggie88's picture
Duggie88
Posts: 557
Joined: Feb 2010

I use to always tell the crew if there is a fire, don't forget about me just before the mask was put on. I hated it but took no drugs and spent the time counting the stations and the zappings thinking about one of my grandkids the whole time. They even piped in music for me.  I went through the first 3 and told my wife I was done and wasn't going back but my radiologists told me if I can make the 74 mile drive one way each day he would get me through 30 treatments. My issue wasn't really anxiety, I was suffering the symptoms after 3 days they told me I would feel after about  1 to 2 weeks. You have to find what works for you and if medication is the road you must travel hop in and lets go for a ride. If I could do it anyone can. Always discuss your issues with your team and doctors they are getting paid to help you through this.

      Jeff

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

I had them make a big hold right where my mouth, nose & eyes was, it helped me a lot, just being able to see and breath better. I found that if I keep my mind focused on something or even praying while doing treatment the time goes a lot faster and I would be finish before I know it.

God Bless and help you to relax during your treatments.

Hondo

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

I was able to have eye holes cut in my mask, but the techs had drawn target lines around the nose and mouth, so they would not cut those out for me. 

Deb

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

My rads MD, wouldn't alter the mask at all....

You guys were lucky, LOL.... of course that's a chemo/rads joke...

JG

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

I remember getting fitted and it wasn't so bad but the first time they snapped me down to the table, I was taken back at how tight and restricting it was. That surprise never went away until close to the end (because I had lost so much weight, the mask was looser). I didn't need any meds. I just listened to music (3-4 songs) and it was over. It's funny... I suffer more now with "scanxiety" than I did during the actual treatment. The whole year+ from diagnosis until August or so of last year was basically a blur. I was so wrapped up in just surviving that I didn't have time to worry. Now? I'm 10 months post Tx and I find the "scanxiety" to be a bit troublesome. It's something I'll be discussing with my team in May as well as with my cardiologist and GP. 

Positive thoughts and prayers

"T"

edbravo's picture
edbravo
Posts: 62
Joined: Feb 2014

I went through the Mask today and with all your advices and encouragements, I made it through the 1st round of 35 radations. The Xanax really helped to calm me down, especially it lowered my fast beating heart. The doctor made a bigger nose-hole on my mask so that I could breath better, however he did not recommend cutting the mouth or eyes away because according to him the structure of the mask may go out of shape, furthermore the planning and measurrements may change (have to be re-do) and the mask might expended when they strach it to buckle it down to the table, in which the rads-ray may not hit the right spots. Anyway, thank you everyone for answering my questions and helping me through this period. Appreciate it and may god bless you all. Laughing

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Good news to get through...

The measurments are like to the millimeter, so any alterations, weight lose, etc that could change that would need addressed... You don't want any rads hitting in areas that aren't needed....

Several of us had to have new masks made during treatment as a result of weight loss....

John

thennies61's picture
thennies61
Posts: 213
Joined: Jan 2014

Willing to bet also at least in my case as the swelling in face goes down will need a couple of new masks.Will know tommorrow as I have a meeting with the radiation team.Was told it would be about 3hrs not  sure why.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

As to an idea how tight the mask is..., myself, Dawn and others would come out of a session with waffle marks across our foreheads....

JG

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

Skiffin,

I can still see it (on you)

Matt

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

That's from the tennis racket after teasing my wife too much...

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

edbravo, very happy for you that you got thru it w/o any problems.  this group is really good at helping to go thru this journey with as few problems and side effects as possible.  we all try to help each other.  i hope your other 34 are as smooth as this one was.  let us know about your progress.

dj

edbravo's picture
edbravo
Posts: 62
Joined: Feb 2014

Thank you very much debie and others. I am so glad to have kind people like you're all to help others like us going through this moment. I appreciate alot and my 2nd radiation went so well today.Laughing Without this forum i would have been lost. Thanks AGAIN!!! 

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Edbravo - the mask was "semi-terrifying" to me when I had it made, that is what I told my wife when I came out of it - for treatments I took a little valium about 20 minutes before treatment, it worked, I also asked the tech to talk me through it - I asked them to let me know the stage we were at - I was on the table for about 10 minutes and the would say - "okay doing scan, scan looks good - first treatment, second treatment, last one - done we are coming in to take the mask off" they did this for me everyday for 35 days - the last two weeks I didn't need the valium anymore - I never watched the treatment - after I laid down on the table I would close my eyes and not open them until they had unbuckled the mask and lifted it up - that was my way of getting through it every morning for 35 mornings - be strong you can do it - as Don says it is rough but you can get through it - one other thing I did was think about the renovation project at my house that I was going to do  - the kitchen and dining room - I thought about it almost the entire time on the table and visualized the projedt from start to end, every day - you can do it

All the best and keep writing with anything you need to ask, talk about or vent

Steve

Finished Jan 17th with treatments and waiting for scan april 14th

thennies61's picture
thennies61
Posts: 213
Joined: Jan 2014

Fitted for mask on monday they said they will call when to come in for thier dry run.I didn't have to much of a problem with the fitting my problem was as I layed there had trouble with slightly gaging.Started even before they layed the mask on.Not sure if was laying flat on my back or head tited slightly with trach tube in or what.But couldn't stop slightly coughing don't think it was enough to stop the ct scan they did.Like Steve took my mind elsewhere but could feel a tickle in throat the whole time.

Coldinohio's picture
Coldinohio
Posts: 12
Joined: Feb 2014

Went on Tuesday morning for my mask fitting and ct. The worst part for me was the junk in the back of my throat that I could not swallow, other than that I just closed my eyes and tried to go to my happy place!

txpipeliner's picture
txpipeliner
Posts: 26
Joined: Mar 2014

hi all , well anothe sole here on CSN website reading and learing about my condition. i have squamous cell carcinoma. i had my upper rite jaw bone with cancer, they removed half of the bone and half of my palate. i now have a hole in roof of my mouth. they have made me a prosthesis that fills in the hole. i go to get radiation treatments on 3-27-14. thank you for all the information on this site.

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

txpipeliner, so sorry you are going thru the battle and wanted to welcome you to our family.  we will all be here for you as you go along.  there are several others who have had the same type of cancer and lost half of their jaw.  i'm sure they will chime in.  i hope you will come back often and please keep us posted on your progress.

God bless you,

dj

Mikemetz's picture
Mikemetz
Posts: 354
Joined: Nov 2011

I'm not 100% sure but there seems to be more questions and stories around "The mask" than any other topic on the board.  Your strategy to get in your happy place during the treatments is a good one.  First, take the meds if that's needed.  I took them for the first 5-6 times and then was calm enough not to need them the rest of the way.  Once strapped in, I went into my "long flight zone."  When I have long flights, I don't think about anything that might make the flight seem longer. Same thing on the rads table--I just zoned out, ignoring anything that might clue me to how much time was left after each session started.  When it was over, it was over.

As for cutouts, my mask pressed hard against the swollen area around the tumor and I went white-knuckle in no time.  The techs were great and made a cutout so there was no pressure on that area.

Good luck with this part of your journey.

mike

 

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

I counted the "zaps" so I knew how many more to go, kept my mind busy. I had a lot of congestion towards the end so trying not to cough was kinda miserable.

robertjuy
Posts: 45
Joined: Aug 2011

My wife performed like a champ. We still have the mask as a badge of honor in our house. She did it for me and my son. For some reason she did not care and stayed still during the radiation. She was told that some people get clostrophobic and throw up from the mouth guard. I surily would have thrown up. I have a very quick gag reflex. She did too. but she said to herself, screw this I'm going to have to do this over and over.

omnedon's picture
omnedon
Posts: 8
Joined: Apr 2013

I had to take zoloft and ativan everyday at the end the mask loosened up so much they talked about refitting me but I got by without having to go through it again.

txpipeliner's picture
txpipeliner
Posts: 26
Joined: Mar 2014

well i made it thtu first day of RT yesterday, with a lot of nervous feelings, the teck,said i would be seeing DR. today i am sure going to ask, for some meds. to take. i tryed to open my eyes yesterday buy mask is so tight i could not do it. 34 more days to go.

Guzzle
Posts: 606
Joined: Mar 2014

American Friends if you google a blog by a guy called Theo the radioactive man - afraid don't know how to put a link on via my phone - it does give an amusing spin to the mask! I will reserve j

 

udgement as I have this to come. Sedate or not sedate?

KB56's picture
KB56
Posts: 260
Joined: Apr 2013

Guzzle, I found the Theo The Radioactive Man and really enjoyed reading it and it was pretty darn accurate.   I thought his wife's section was good as well.   Thanks for forwarding and good luck as you start the treatment.

 

Keith

thennies61's picture
thennies61
Posts: 213
Joined: Jan 2014

Went in for my rads and came out needing new mask.The mask didn't fit right and as my swelling has gone down they ended up making me a new mask.And the bummer was having to go though the whole routine again.Was a long day with my it being a drug day also.Then had to have IV with dye again which they missed the vein twice and then the mask was wayyy to hot to put it on.Had them cut holes before it dried hard.If you cut it after it will spring open wider which it did the first time.But the plus side to it was that the swelling is going down all the time.

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

sorry you had to go thru all that again but hopefully this is it and you can move forward with tx.  hope the swelling continues to get better.  praying your tx goes smoothly from this point on.

dj

Guzzle
Posts: 606
Joined: Mar 2014

Keith make sure you leave a post so Theo knows he has gone global! I go for phantom of the opera next week. Ive got too many invitations to visit people prior to start of treatment and not enough time! Damn. And the UK is tiny! It could probably fit into some of your lakes! GOT 6 weeks radiotherapy with chemo at start,middle and end.

KB56's picture
KB56
Posts: 260
Joined: Apr 2013

Guzzle, the way you sailed through the tonsillectomy you will do fine with the chemo and radiation.  stay positive and keep your sense of humor and wit and before you know it you will be finished.   Stay hydrated ( I had to get two IVs of fluid during my treatment and if you get dehydrated you feel horrible) and manage the pain. The  good folks on this site can help with the symptoms you will have along the way.  

Visit all your friends and enjoy yourself!   They should all be buying you dinner so take advantage of it.  

All the best,

Keith

omnedon's picture
omnedon
Posts: 8
Joined: Apr 2013

They gave me ativan and zoloft to take about 30 minutes before each radiation treatment after the third week the mask started to loosen up so it was a little betterSmile

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