NOT AGAIN DITTO

ditto1
ditto1 Member Posts: 660
Hopefully not, again a MASK question. And yes I reread the superthread before writing this so redirect me if I missed the answer. I go for the fitting (i guess)tommorrow. I came across a you tube video showing how they bring the Mask Mesh from a warm water tray and lay it over the face. Then they put him in a CT scan to make the markers or tatoos on the mask. So does that mean another CT scan just to sit the rad marks. How does the MASK feel when they 1st lay it over your face to create the mold? So just looking for a play by play of the fitting and marking process.
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Comments

  • meaganb
    meaganb Member Posts: 244 Member
    You will go through the CT
    You will go through the CT Scanner but won't have an IV or contrasting dye, or at least I didn't. It's strictly to make sure they are making the correct marks on the mask and the the mask is positioned correctly. The nurse kept saying " imagine this as a warm, wet cloth" when they put the mesh over my face. It is warm and wet, but gave me the sensation of not being able to breathe for a few seconds. You can breathe fine though, there are lots of holes:) I am fine with the mask now, but wish I would have been given something to relax me for the fitting. They actually had to do 2 fittings for me because I wasn't positioned correctly for the first. No worries, you will get through it!!
  • ditto1
    ditto1 Member Posts: 660
    meaganb said:

    You will go through the CT
    You will go through the CT Scanner but won't have an IV or contrasting dye, or at least I didn't. It's strictly to make sure they are making the correct marks on the mask and the the mask is positioned correctly. The nurse kept saying " imagine this as a warm, wet cloth" when they put the mesh over my face. It is warm and wet, but gave me the sensation of not being able to breathe for a few seconds. You can breathe fine though, there are lots of holes:) I am fine with the mask now, but wish I would have been given something to relax me for the fitting. They actually had to do 2 fittings for me because I wasn't positioned correctly for the first. No worries, you will get through it!!

    Thanks
    for the quick reply. Funny so much talk about the MASK itself until I saw the video did not know the process just to get it started. May be my first Ativan sighting tommorrow.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    ditto1 said:

    Thanks
    for the quick reply. Funny so much talk about the MASK itself until I saw the video did not know the process just to get it started. May be my first Ativan sighting tommorrow.

    Mask
    Hi Ditto1.

    I do not do well in confined spaces, at all. I barely got through the PET scan (and remember when you a as big as I was lying on your back for even a few moments makes you feel as if you can not breathe, but of course you can.

    I told them direclty that I could not do the mask (as they started to lay it over my face) ...a wonderful angel in the back spoke up when she saw my anxiety and said, "let us put the maks on for fitting, then I will cut the face of the mask out".

    My tumor was at the base of the tongue and the left lymph node just under my chin ...so cutting the face out I assume was no problem. So they cut from my eyes to the bottom of my lower lip out and put tape around the rough edges...it made all the difference to me (and I might add it gave me a bit more dignity)....so try that if they are open to it.

    Tell them the folks at the MSTI Clinic in Boise did it for a patient...I still have the mask and can send a picture of it to you.

    Best,

    Tim Cogdill / Idaho
    timcogdill@yahoo.com
  • ratface
    ratface Member Posts: 1,337 Member
    Tim6003 said:

    Mask
    Hi Ditto1.

    I do not do well in confined spaces, at all. I barely got through the PET scan (and remember when you a as big as I was lying on your back for even a few moments makes you feel as if you can not breathe, but of course you can.

    I told them direclty that I could not do the mask (as they started to lay it over my face) ...a wonderful angel in the back spoke up when she saw my anxiety and said, "let us put the maks on for fitting, then I will cut the face of the mask out".

    My tumor was at the base of the tongue and the left lymph node just under my chin ...so cutting the face out I assume was no problem. So they cut from my eyes to the bottom of my lower lip out and put tape around the rough edges...it made all the difference to me (and I might add it gave me a bit more dignity)....so try that if they are open to it.

    Tell them the folks at the MSTI Clinic in Boise did it for a patient...I still have the mask and can send a picture of it to you.

    Best,

    Tim Cogdill / Idaho
    timcogdill@yahoo.com

    It's terrifying
    for a few seconds and then cools immediately before you can whistle Dixie. If you have an imaging test on file they can use that to devise the grid pattern/treatment plan. They somehow used my PET scan to determine face points. It's over in an instant, otherwise it could prove unpleasant. You will never forget it but can do this, really you can. Just follow instructions and don't anticipate.
  • ditto1
    ditto1 Member Posts: 660
    ratface said:

    It's terrifying
    for a few seconds and then cools immediately before you can whistle Dixie. If you have an imaging test on file they can use that to devise the grid pattern/treatment plan. They somehow used my PET scan to determine face points. It's over in an instant, otherwise it could prove unpleasant. You will never forget it but can do this, really you can. Just follow instructions and don't anticipate.

    Im ready
    Thanks to all of you, I know I have asked a lot of questions about the MASK and most recently the PEG, I guess since Im finally at the top of the slide, just double checking before I go down. I know they may have been redundant, but Im impressed that no one says hey next question please.... just shows the compassion you folks have. Thanks Tim Im good, but maybe since they have lots of pictures 2 CTs and 1 PET maybe they can get the markers from those Kodak moments.
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    ditto1 said:

    Im ready
    Thanks to all of you, I know I have asked a lot of questions about the MASK and most recently the PEG, I guess since Im finally at the top of the slide, just double checking before I go down. I know they may have been redundant, but Im impressed that no one says hey next question please.... just shows the compassion you folks have. Thanks Tim Im good, but maybe since they have lots of pictures 2 CTs and 1 PET maybe they can get the markers from those Kodak moments.

    Ditto
    I'm a recent "masker" so here's my perspective. I had read the posts so knew a little to expect. I opened my mouth a little and of course could breathe through my nose. While it's still soft they were pulling it to fit and also they pull it down to lock onto the table. They had me shut my mouth some and also my eyes. After adjusting it some, they told me I could open my eyes. Well, I could only get them 1/2 open so the rest of the fitting they were stuck, which made my eyes water. When they took off the now rigid mask, I began wiping my eyes, and they wondered if I was ok :) I asked the tech to cut out the eyes and she said she sure could, and that has made it easier. It is just SOOOO tight. Be prepared for that. You can breathe. I just try to think of pleasant thoughts and get thru it! Had my 2nd one of 28 today! Tolerable but not a pleasant experience. Not painful or long, so doable!! Go for it Ditto!! If you're claustrophobic you might need meds. I made it without it and hopefully can the rest of the journey!
  • jtl
    jtl Member Posts: 456
    ratface said:

    It's terrifying
    for a few seconds and then cools immediately before you can whistle Dixie. If you have an imaging test on file they can use that to devise the grid pattern/treatment plan. They somehow used my PET scan to determine face points. It's over in an instant, otherwise it could prove unpleasant. You will never forget it but can do this, really you can. Just follow instructions and don't anticipate.

    Rat
    That was not my experience. They did the CT at the time of the mask, made the marks and then it goes somewhere to determine the correct simulation. When I started the actual RT they did the CT for a couple of minutes before each IMRT to adjust the beam angles. This is low rad CT. Things may have changed.
  • Ingrid K
    Ingrid K Member Posts: 813
    jtl said:

    Rat
    That was not my experience. They did the CT at the time of the mask, made the marks and then it goes somewhere to determine the correct simulation. When I started the actual RT they did the CT for a couple of minutes before each IMRT to adjust the beam angles. This is low rad CT. Things may have changed.

    take the drugs !
    Ditto, if you are still a bit apprehensive (and who wouldn't be), definitely take the Ativan before hand. It will calm you enough so that you can get thru it, but all that the others have said is true... but it is also a bit of mind over matter. Be determined to not let it bother you too much, and it won't. Good luck to you.
  • osmotar
    osmotar Member Posts: 1,006
    Feelings
    My tech that made my mask said the mesh would be hot..actually it felt warm and wasn't too bad.The one and only time I took an ativan was for this process, since I was scared to death of freaking out, again it was the unknown, the tech making the mask put markers on the mask, no neck tats Once the mask was made, a week later they did a simulation with the mask on and the rad machine..the mask was rubbing my eyelids so the rad tech cut the eyes out and I was good to go. At any time if the mask doesn't feel right or something is bothering you let your techs know, they are there to help you, when they would put mine on, if it didn't hit my left nostril, sounds funny I know, jsut in the right spot I would ask them to reset the mask on my face. After the first treatment , the mask is tight fitting, I had waffle marks on my face and my sweet 19 yr old neice who was out here with me said we should stop and get some butter and syrup..such a funny kiddo..NOT..LOL..anyway everytime a new family memeber would come out to AZ to see me and go to a treatment with me the techs allowed them back in the room when they were putting the mask on to see what I was having done, I think sometimes we forget that our families have the same fears of the unknown as we do. We are all different D1 you will find your own way/means to get thru this process of the mask.

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    MeganB
    Just as Megan said....

    I did have Xanax prescribed for the real deal, but only needed it for the first week to knock the edge off.

    After that I was good to go.

    Yep, it's kind of like water torture the first wet fitting...sensation of not being able to breathe.

    LOL, have fun....just teasing, it sucks, I hated the mask, But you do what you gotta do to get through.

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    meaganb said:

    You will go through the CT
    You will go through the CT Scanner but won't have an IV or contrasting dye, or at least I didn't. It's strictly to make sure they are making the correct marks on the mask and the the mask is positioned correctly. The nurse kept saying " imagine this as a warm, wet cloth" when they put the mesh over my face. It is warm and wet, but gave me the sensation of not being able to breathe for a few seconds. You can breathe fine though, there are lots of holes:) I am fine with the mask now, but wish I would have been given something to relax me for the fitting. They actually had to do 2 fittings for me because I wasn't positioned correctly for the first. No worries, you will get through it!!

    I thought I was just there for a consult....
    when they said..."do you have time for a fitting?"......YIKES.

    However, for me, it was like having a very warm washcloth put over my face (felt kinda good)...then they molded it to fit me, let it sit for a few minutes to cool, drew eye holes in it and took it off. I was surprised that it wasn't near as freaky as I'd imagined.

    I can honestly say, I have not ever used my eyeholes......once it's on, I keep my eyes closed and drift off to somewhere else. I always have an antivan in me as that's part of the amifostine protocol, so I'm relatively relaxed anyway.

    p
  • Pam M
    Pam M Member Posts: 2,196
    Was Very Nice - AT FIRST
    They put the warm material on my face and head, and kind of massaged it to shape it - pretty quickly, it started cooling, then it wasn't so nice.

    Find out if it's cold/hot in your rad room. It's easier if he wears the same type of clothes for the fitting as he would like to wear for rads. Do well.
  • phrannie51
    phrannie51 Member Posts: 4,716
    Pam M said:

    Was Very Nice - AT FIRST
    They put the warm material on my face and head, and kind of massaged it to shape it - pretty quickly, it started cooling, then it wasn't so nice.

    Find out if it's cold/hot in your rad room. It's easier if he wears the same type of clothes for the fitting as he would like to wear for rads. Do well.

    Everyday they ask if I want a warm blanket..........
    and everyday, I say yes.........it helps me to relax. I told them they can quit asking until the temps outside reach the 90's (won't happen here, tho till August......and I won't be getting rads at that time...LOL).

    p
  • tommyodavey
    tommyodavey Member Posts: 728 Member

    Everyday they ask if I want a warm blanket..........
    and everyday, I say yes.........it helps me to relax. I told them they can quit asking until the temps outside reach the 90's (won't happen here, tho till August......and I won't be getting rads at that time...LOL).

    p

    Surprised
    I am surprised that so many here had a hard time with the mask. It was a cake walk for me and the least of my problems. Yes, the plastic is warmed up in water and stretched over your face. But before they did that, I was given a tube of K-Y jelly to put on my hair, eye brows and basically anywhere I had hair. They said the mask is famous for sticking to the hair and it hurts taking it off. First time I've used that for anything other than....well, you know. And it did work quite well, no hair got pulled out.

    I could see out of one eye but it didn't bother me. And just like Phrannie I go into a meditative state until it's over. My sessions were 8-9 minutes long but felt like two.

    Try to go in there like it is no big deal and you'll find it really isn't. After my sessions were over, I took home the mask and hung it up in the garage for now. It's not in the house because I don't want to be reminded.

    Remember, no big deal.

    Tom
  • ditto1
    ditto1 Member Posts: 660

    Surprised
    I am surprised that so many here had a hard time with the mask. It was a cake walk for me and the least of my problems. Yes, the plastic is warmed up in water and stretched over your face. But before they did that, I was given a tube of K-Y jelly to put on my hair, eye brows and basically anywhere I had hair. They said the mask is famous for sticking to the hair and it hurts taking it off. First time I've used that for anything other than....well, you know. And it did work quite well, no hair got pulled out.

    I could see out of one eye but it didn't bother me. And just like Phrannie I go into a meditative state until it's over. My sessions were 8-9 minutes long but felt like two.

    Try to go in there like it is no big deal and you'll find it really isn't. After my sessions were over, I took home the mask and hung it up in the garage for now. It's not in the house because I don't want to be reminded.

    Remember, no big deal.

    Tom

    still no mask, but I saw one
    up close and personal. Since my ONC wants me to have 2 chemos 1st he just had them put me under the CT with my head taped in the basic position. Then took the scan and off I went to come back home. So its like pulling a bandage off it hurst worse doing it slowly. The RAD gal showed me the chest up MASK they had sitting in the room. Sorry no matter how many times I see it in person or videos, still freaking me. Time will tell.....
  • phrannie51
    phrannie51 Member Posts: 4,716
    ditto1 said:

    still no mask, but I saw one
    up close and personal. Since my ONC wants me to have 2 chemos 1st he just had them put me under the CT with my head taped in the basic position. Then took the scan and off I went to come back home. So its like pulling a bandage off it hurst worse doing it slowly. The RAD gal showed me the chest up MASK they had sitting in the room. Sorry no matter how many times I see it in person or videos, still freaking me. Time will tell.....

    Like so many on here are tempted to remind us, Ditto...
    "that's why God made drugs".......If you're this nervous before your fitting, then I would let them know that you want to take an Antavan, or another relaxant before being fitted.

    The only hero's here are those who get thru to the other side of the tunnel...we aren't required to be hero's on the way......truly, my friend...take something the day you go in.

    p
  • Ingrid K
    Ingrid K Member Posts: 813

    Like so many on here are tempted to remind us, Ditto...
    "that's why God made drugs".......If you're this nervous before your fitting, then I would let them know that you want to take an Antavan, or another relaxant before being fitted.

    The only hero's here are those who get thru to the other side of the tunnel...we aren't required to be hero's on the way......truly, my friend...take something the day you go in.

    p

    take 'em
    Ditto: TAKE THE DRUGS....don't try and go without, since you are so apprehensive. TAKE THE DRUGS.... oh and by the way, TAKE THE DRUGS. like phrannie says, that's what they were made for. At for the first time, for sure take the Ativan before the fitting and maybe session #1 until you can actually see what's involved. It's not fun, but very do-able.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Ingrid K said:

    take 'em
    Ditto: TAKE THE DRUGS....don't try and go without, since you are so apprehensive. TAKE THE DRUGS.... oh and by the way, TAKE THE DRUGS. like phrannie says, that's what they were made for. At for the first time, for sure take the Ativan before the fitting and maybe session #1 until you can actually see what's involved. It's not fun, but very do-able.

    Ditto DITTO
    Take them if you gottem.....

    More than likely if you are like me, you'll only need them for the first week or so.

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

    So it was really hard for me, but the Xanax took the edge off and after a few days I was used to the routine and could handle it on my own.

    JG
  • ditto1
    ditto1 Member Posts: 660
    Skiffin16 said:

    Ditto DITTO
    Take them if you gottem.....

    More than likely if you are like me, you'll only need them for the first week or so.

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

    So it was really hard for me, but the Xanax took the edge off and after a few days I was used to the routine and could handle it on my own.

    JG

    Xanax in the drawer
    just have to decide its time. I agree, the RAD lady said she had them all. Ones who handled it, had to take 5 or come back tommorrow we will try again. I truly do not want to delay the inevitable so hopefully one and done. The RAD doc is open to eye holes and maybe mouth, I told him about Tims cut out, maybe if necessary. He does to the shoulder portion of the mask and that is just adding to the axiety but I have learned most of the fears in my life were much worse than the realities. Hopefully this will be one of them. But if not "JUST SAY YES TO DRUGS"
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    ditto1 said:

    Xanax in the drawer
    just have to decide its time. I agree, the RAD lady said she had them all. Ones who handled it, had to take 5 or come back tommorrow we will try again. I truly do not want to delay the inevitable so hopefully one and done. The RAD doc is open to eye holes and maybe mouth, I told him about Tims cut out, maybe if necessary. He does to the shoulder portion of the mask and that is just adding to the axiety but I have learned most of the fears in my life were much worse than the realities. Hopefully this will be one of them. But if not "JUST SAY YES TO DRUGS"

    Don't worry......
    I know its easier said than done, but you will be fine. I was scared to death
    At the fitting and going through the CT machine all strapped up like Hannibal
    Lecter, but when I went for my first rad session I had asked if he would cut
    The eyes and mouth out and he had it ready so when they put it on me it was
    No where near as bad as the first time and also the room was nice and bright
    With music ( Jimmy Buffett one day Billy Joel the other ) and the machine was
    All open that rotated around me so I had no problems from then on.

    You WILL be fine and it will soon be history,
    By the way I still have my mask.

    God bless
    Tonsil Dad,

    Dan.