Cannot breath lying down and radiation is to begin

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Shell_7801
Shell_7801 Member Posts: 71
in Head and Neck Cancer #1

Hi all,

My simulation is Wednesday but you know 3 days is too long to wait for my questions.  I'm hoping someone here has experienced this first hand and can lend some support.  I am absolutely terriefied that my radiation treatments will have to be postponed because when I lay down on my back I cannot breath through my nose.  I had a tonsillectomy and neck dissection done on the 4th that I am still healing from.  The back of my mouth including the roof are still white and scabby looking.  It feels like something is caught in the rear of my throat and I can't get it to go down.  So when I lay down it puts pressure on my throat like it is closing it up/cutting off air supply.  Sitting up and gasping for air through my mouth is the only thing that cures this.  I am still sleeping sitting up.

How am I going to be able to lay flat wth my head in the mask?  I don't fear the mask, I'll be fine feeling all snug and confined but if I can't breath....???!!

Does the machine demand that I'm laying down?

Are there meds to make the mucous go away?

 

Off topic 2nd queston:

I may not get the "clinical trial" Erbitux and have to do the Cisplatan.  Will either make my hair fall out?  I haven't asked yet and it finally occurred to me.  I might just get it all cropped off short before it starts.

 

Shell

 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
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    Shell, i'd call the doc

    Shell, i'd call the doc tomorrow and ask him these very good questions.  if there is going to be a problem, they need time to illiminate it before Wed.  I'm sure they'll come up with something.  i'm sorry you're having this issue.  let us know if you call the doc what solution he found.

    God bless you,

    dj

  • KTeacher
    KTeacher Member Posts: 1,103
    #3
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    Call team

    The simulation takes much longer than the radiation treatment.  Even though I new what to expect the third time around, I had to sit up half way through simulation because of headache.  I never had a breathing problem during treatment but did worry  about nausea a few times.  Ask the techs. for the signal that you are in distress (hand up).  You might need to rinse with salt water before treatment to help with the mucus.  Could you possible have thrush (white patches at back of mouth)?  I had thrush the entire 1st go around and part of treatment the next year.  You might need to take a pill to relax through the simulation.  Call the team Monday to be prepared.

    I did not lose hair with Cisplatin but you will lose hair in the field of radiation, it does come back.  I lost about an inch along the back.

  • lornal
    lornal Member Posts: 428
    #4
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    radiation & chemo

    Cisplatin will not make your hair fall out.  After treatment is over, it will probably thin, but that is all. I've read the other will cause you to lose our hair.

    Regarding radiation.  Can you breath through your mouth?  I had a cork in my mouth - held it in my teeth, so I was abe to breath like that.

    I was medicated for ALL 30 treatments - and 5 valium to get the mask made.  I have never been one to lay down, even to sleep so that was tough - the meds certainly made it easier.

    Talk to your doctor - or at least the nurse - the nurse will make sure you have what you need to get through this.

    Lorna

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    I think you better tell them

    about the breathing thing....they might put off the simulation for a few more days of healing time for that throat.  I couldn't breathe through my nose during rads....but did it through slightly parted lips.....couldn't open my mouth either.  It might just be that a relaxant like Lorazipam will help with the breathing....

    Cisplatin didn't make me lose hair.....the Oncologist told me to get a buzz cut, but chose to just get my hair cut short first.  After rads were over I had another 3 cisplatin treatments, plus they added 5FU.....that did make me lose hair....and my eyelashes....so I was glad I got my hair cut.  If they don't mention 5FU to you, then chances are you'll keep your hair (except a 2 inch strip in the back at your neckline....rads get that.....and it comes back).  Longer hair will cover it :).

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #6
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    you will be ok

     

    Shell,

    I took 1 Lorazapam to relax.  My mask required a mouth piece I could breathe through.  Many times I felt like I wouldn’t be able to do it, but somehow we manage.

    For many of us we develop a whole procedure before and during mask time.  For me it started with the Lorazapam at home,  magic mouth wash in the parking lot, hit the bathroom, rinse and spit, lay down, quick rub of my arms   and face, turn on music, put on mask and away we go.

    Try to relax and find the strength for the 20 minute ride.

    Matt

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
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    Hi Shell

     

    I have to sleep on a 30 degree angle, at first it was a little hard now it is normal. I find this helps me with not being able to swallow so stuff doesn’t go in my Lungs and also helps me with breathing. I also need to use Breath Right strips at night to keep my noise open; I never had problems like that until the doctor went up my noise to remove some broken bones. On the hair I can’t remember what Chemo I had but did not loose it all, I had a full beard at the time and one side of it fell out and the other side was not effective all that much, I cut it all off and never could grow a full beard again.

     

    Tim Hondo

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #8
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    I was the same way

    when I started rads.  I had just had two huge surgeries to remove my lower left jaw and I was SO swollen.  I was still sleeping in a recliner when rads started.  I couldn't even lay flat without help due to the swelling.  I had to hold a tube in my mouth and I mouth breathed the entire time.  If I felt like I was choking or couldn't catch my breath, I would wave my hand and they would immediately stop so I could sit up and spit, choke and gag a little.  It wasn't pretty, but I found that slowing my breathing down, really concentrating on each breath, helped me some.  (not to mention the constant praying I did the entire time I was there!!!)  Talk to them and explain the situation.  I told them upfront that I was having issues and they helped me tremendously!  Keep us posted please!!

  • adkwmn
    adkwmn Member Posts: 3
    #9
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    Shell....

    I did not lose my hair from Cisplatin.  However, I did lose some hair at the back of my neck from the radiation.  good luck!  I'm two years out from treatment and all is well.  

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