radiation masks

CherieLW
CherieLW Member Posts: 472

These scare me and I haven't even seen dad's.  Right now it's just late and I'm having a hard time trying to stay positive at the moment bc my thoughts just consume me.

 Please tell me about radiation... the side effects most common and what not of you would.  

 

Thanks for everyone's support so far. I guess I'm just having a moment where my heart is really aching for dad. 

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    mask and rads

    Cherie,

    You really need to skim through the Superthread.  It has more information than you can believe.

    In a nut shell, Your Dad’s mask is in a locker with all the other masks. Unless you witness a rad treatment you probably will not see it until treatments are over. I did not like the mask, others get along just fine.

    Some rad side effects (not chemo) sore throat, mouth and tongue.  Difficulty swallowing (that is why some have a PEG).  Whiskers from the chin down, gone.

    Fatigue, always tired, I slept a lot.

    Dry mouth like nothing you ever dreamed about.

    No saliva or spit

    No taste buds (or very little)

    Terrible mucus, coughing, hacking, dry heaves.

    This is just some of what I went through.  Chemo can bring up terrible side effects too.  There are just as many people that had it easier as had it tougher.

    It all gets better once treatments are complete. My taste buds are  coming back along with the saliva. I sleep very well and I am in no pain.

    He will be ok (if he can just get moved-in) kidding

    Matt

  • CherieLW
    CherieLW Member Posts: 472
    CivilMatt said:

    mask and rads

    Cherie,

    You really need to skim through the Superthread.  It has more information than you can believe.

    In a nut shell, Your Dad’s mask is in a locker with all the other masks. Unless you witness a rad treatment you probably will not see it until treatments are over. I did not like the mask, others get along just fine.

    Some rad side effects (not chemo) sore throat, mouth and tongue.  Difficulty swallowing (that is why some have a PEG).  Whiskers from the chin down, gone.

    Fatigue, always tired, I slept a lot.

    Dry mouth like nothing you ever dreamed about.

    No saliva or spit

    No taste buds (or very little)

    Terrible mucus, coughing, hacking, dry heaves.

    This is just some of what I went through.  Chemo can bring up terrible side effects too.  There are just as many people that had it easier as had it tougher.

    It all gets better once treatments are complete. My taste buds are  coming back along with the saliva. I sleep very well and I am in no pain.

    He will be ok (if he can just get moved-in) kidding

    Matt

    Thanks for the info...its all

    Thanks for the info...its all new to me so I just want to be informed.  How soon after your treatments would you say you started feeling better?  I'm sure it's probably different for some. And he will get moved in!  He's got a lot of support.  I mean a lot.  Also,  did your doctors recommend resting or going about your daily activities?  I worry about him doing too much,  not sure it's good or bad.  Thanks for answering all my questions. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    CherieLW said:

    Thanks for the info...its all

    Thanks for the info...its all new to me so I just want to be informed.  How soon after your treatments would you say you started feeling better?  I'm sure it's probably different for some. And he will get moved in!  He's got a lot of support.  I mean a lot.  Also,  did your doctors recommend resting or going about your daily activities?  I worry about him doing too much,  not sure it's good or bad.  Thanks for answering all my questions. 

    Better ...

    Better is relative... what is better for you and me, doesn't mean the same to your father, or Matt...

    Generally, everyone is still cooking from rads for a good month after the last one...and that's usually your roughest period during treatement, and recovery.

    But for me, I was still fishing, working from home (computer work)..., tired, and hungry..., LOL.

    Everyone is different...

    The tonsils coming out was more intense, just shorter...

    Read the SuperThread, and old posts, ask questions..., but realize, what some have went through, more than likely your dad won't have them all... But I guarantee, that whatever he goes through..., someone else here has also..., and survived to help you get through...

    JG

  • phrannie51
    phrannie51 Member Posts: 4,716
    The mask is a spooky looking thing....

    and most of us would gladly run over it with a car, or use it for target pratice when rads are done.  The only side effects I got from radiation were....dry mouth (dryer than a desert).....no taste buds....a decent sun burn on my neck which I controlled with Calendula cream and aloe vera....and fatigue.  I didn't have the mucous, but attribute that to another drug I was getting to protect the salivary glands (Amifostine). 

    Here is what the masks look like (I had my rad tech's take pictures one day).

      http://csn.cancer.org/node/241800 

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    a little more

    Cherie,

    I actually started to feel better after the first week post treatments. I know this for sure because I had my blasted PICC line removed and it always itched to no end. At week two I popped my PEG and that felt measurably better.  While I felt fine and the neck burn and sore mouth, tongue and throat went away, my eating did not truly rebound for 7 months.

    Working for me was piece meal and from home.  Since I took 1 Lorazapam every day I wore the mask, I mostly slept my afternoons away.  Any work I did was a challenge because of the fatigue.

    My doctors did not say much about activities except no shaving with a razor.  They were more concerned with my blood work and side effects.

    You will be fine and a lot of help for your Dad. It will be tough sometimes and you may get to know your Dad and the human condition more closely than you can fathom right now.  It is not easy to see a loved one go  through cancer treatments.

    It wasn’t all doom and gloom, I still visited my parents every week-end, watched a lot of TV and went for rides.

    Time for bed,

    Matt

  • yensid683
    yensid683 Member Posts: 349
    Radiation is scary

    Well, if you know about it, perhaps not, but for most people, they see images of post WWII survivors of Hiroshima and Nagasaki and it really ramps up the fear.

    I think the anticipation of what's coming might be the worst part of the rads.  I found that once things started it was very easy to do, when you think about it, you just lie on the table and it moves around you.

    I work in a technology field and one of our product segments is robotics and motion control, so I was intimately familiar with how and why the table moved, the IMRT gantry moved, the aperture window changes, and the way a large contactor would bang in when they turned the linear accellerator on. 

    @ but it worked for me. 

    If there was any one thing that I found objectionable it was the boredom!  I would do math while the machine moved, timing the moves and 'zaps' and then doing percentage calculations so I could keep my mind occupied.

    Others have described the side effects and your dad's radiation oncologist will go over all of them, what to expect and how to treat them. 

    From day one I took care of the skin on my neck, washing it thoroughly before treatments and then slathering it in Aloe Vera at first and then as things got to the 'sunburn' point, switched over to Aqua-Phor.  No scars on the skin and it healed very quickly.

    Throat issues are much different.  I found that for the first two weeks that sucking on popsicles post treatments kept 'ice' on the irritated tissues and kept it from being too obnoxious.  By the end of week 3 I could not stand the cold anymore so I started taking the prescribed pain medications.  They helped but don't expect them to eliminate pain, they made it tolerable. 

    As I said before, the sore throat will make it hard to swallow, but he must keep working on those muscles so they don't 'forget' how. 

  • CherieLW
    CherieLW Member Posts: 472

    The mask is a spooky looking thing....

    and most of us would gladly run over it with a car, or use it for target pratice when rads are done.  The only side effects I got from radiation were....dry mouth (dryer than a desert).....no taste buds....a decent sun burn on my neck which I controlled with Calendula cream and aloe vera....and fatigue.  I didn't have the mucous, but attribute that to another drug I was getting to protect the salivary glands (Amifostine). 

    Here is what the masks look like (I had my rad tech's take pictures one day).

      http://csn.cancer.org/node/241800 

    p

    I hope you did run over it!

    I hope you did run over it!  Hope no one ever has to go through it again.  Thx for the pic.  I really hope dad has minimal side effects too..can you buy calendula cream over the counter? 

  • CherieLW
    CherieLW Member Posts: 472
    Skiffin16 said:

    Better ...

    Better is relative... what is better for you and me, doesn't mean the same to your father, or Matt...

    Generally, everyone is still cooking from rads for a good month after the last one...and that's usually your roughest period during treatement, and recovery.

    But for me, I was still fishing, working from home (computer work)..., tired, and hungry..., LOL.

    Everyone is different...

    The tonsils coming out was more intense, just shorter...

    Read the SuperThread, and old posts, ask questions..., but realize, what some have went through, more than likely your dad won't have them all... But I guarantee, that whatever he goes through..., someone else here has also..., and survived to help you get through...

    JG

    Thanks,  last nite was rough.

    Thanks,  last nite was rough.   Seeing dad,  knowing that this all begins in one day scares me,  but with this site and all of your inputs I'm starting to understand.  I hope this is an easier road ahead than the one I imagine

  • CherieLW
    CherieLW Member Posts: 472
    CivilMatt said:

    a little more

    Cherie,

    I actually started to feel better after the first week post treatments. I know this for sure because I had my blasted PICC line removed and it always itched to no end. At week two I popped my PEG and that felt measurably better.  While I felt fine and the neck burn and sore mouth, tongue and throat went away, my eating did not truly rebound for 7 months.

    Working for me was piece meal and from home.  Since I took 1 Lorazapam every day I wore the mask, I mostly slept my afternoons away.  Any work I did was a challenge because of the fatigue.

    My doctors did not say much about activities except no shaving with a razor.  They were more concerned with my blood work and side effects.

    You will be fine and a lot of help for your Dad. It will be tough sometimes and you may get to know your Dad and the human condition more closely than you can fathom right now.  It is not easy to see a loved one go  through cancer treatments.

    It wasn’t all doom and gloom, I still visited my parents every week-end, watched a lot of TV and went for rides.

    Time for bed,

    Matt

    Thanks again Matt for your

    Thanks again Matt for your helpful input.  Glad to hear you were still able to do some things.  I worry about dad driving his motorcycle he loves. ...stuff like that.   Hanging in there with everyone's support. Just hard knowing it all begins tomorrow. . 

  • CherieLW
    CherieLW Member Posts: 472
    yensid683 said:

    Radiation is scary

    Well, if you know about it, perhaps not, but for most people, they see images of post WWII survivors of Hiroshima and Nagasaki and it really ramps up the fear.

    I think the anticipation of what's coming might be the worst part of the rads.  I found that once things started it was very easy to do, when you think about it, you just lie on the table and it moves around you.

    I work in a technology field and one of our product segments is robotics and motion control, so I was intimately familiar with how and why the table moved, the IMRT gantry moved, the aperture window changes, and the way a large contactor would bang in when they turned the linear accellerator on. 

    @ but it worked for me. 

    If there was any one thing that I found objectionable it was the boredom!  I would do math while the machine moved, timing the moves and 'zaps' and then doing percentage calculations so I could keep my mind occupied.

    Others have described the side effects and your dad's radiation oncologist will go over all of them, what to expect and how to treat them. 

    From day one I took care of the skin on my neck, washing it thoroughly before treatments and then slathering it in Aloe Vera at first and then as things got to the 'sunburn' point, switched over to Aqua-Phor.  No scars on the skin and it healed very quickly.

    Throat issues are much different.  I found that for the first two weeks that sucking on popsicles post treatments kept 'ice' on the irritated tissues and kept it from being too obnoxious.  By the end of week 3 I could not stand the cold anymore so I started taking the prescribed pain medications.  They helped but don't expect them to eliminate pain, they made it tolerable. 

    As I said before, the sore throat will make it hard to swallow, but he must keep working on those muscles so they don't 'forget' how. 

    Your post was very thorough.

    Your post was very thorough.  Thanks everyone for being patient and telling me your experiences.  It's nice you were familiar with things.  Hope this helps my family and myself feel better looking at all your positive perspectives of why is necessary.  

  • phrannie51
    phrannie51 Member Posts: 4,716
    CherieLW said:

    I hope you did run over it!

    I hope you did run over it!  Hope no one ever has to go through it again.  Thx for the pic.  I really hope dad has minimal side effects too..can you buy calendula cream over the counter? 

    I got the cream at the

    health food store...there were several choices of types....I bought the kind for babies butts.  The Aloe 99 I got from the Radiation Dr.

    p

  • CherieLW
    CherieLW Member Posts: 472

    I got the cream at the

    health food store...there were several choices of types....I bought the kind for babies butts.  The Aloe 99 I got from the Radiation Dr.

    p

    Great Phrannie, I'm going to

    Great Phrannie, I'm going to look into that

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Nothing much I can add...

    but I remember when I went to have my mask made, the tech (whom I LOVE) told me.."don't think about what's going on.  Close your eyes and go somewhere fun, relaxing and calm."  And that is so true.  If you go in thinking..."hey...my head is snapped down to this table", then it's a little stressful.  I close my eyes, relax and pray.  I pray for the medical staff, thank God for my healing, and pray for everyone on my prayer list who are sick.  It gives me such peace and the time is over very fast.  My tech also says to me "one day at a time, and there is one more treatment done!"  Day by day.  

  • CherieLW
    CherieLW Member Posts: 472

    Nothing much I can add...

    but I remember when I went to have my mask made, the tech (whom I LOVE) told me.."don't think about what's going on.  Close your eyes and go somewhere fun, relaxing and calm."  And that is so true.  If you go in thinking..."hey...my head is snapped down to this table", then it's a little stressful.  I close my eyes, relax and pray.  I pray for the medical staff, thank God for my healing, and pray for everyone on my prayer list who are sick.  It gives me such peace and the time is over very fast.  My tech also says to me "one day at a time, and there is one more treatment done!"  Day by day.  

    More positive suggestions,

    More positive suggestions, thanks Tracy. I know I pray for him everyday sometimes several times.  I will certainly be praying for you and everyone else who has gone through this,  yet to go through it,  staff as you mentioned,  and anyone in my position feeling helpless for loved ones. 

  • yensid683
    yensid683 Member Posts: 349
    CherieLW said:

    Your post was very thorough.

    Your post was very thorough.  Thanks everyone for being patient and telling me your experiences.  It's nice you were familiar with things.  Hope this helps my family and myself feel better looking at all your positive perspectives of why is necessary.  

    lotions

    one last comment, actually something I missed in a previous post.

    CLEAN neck before any treatment, don't apply the aloe vera or aqua-phor until AFTER a treatment is finished.  Going in with a slicked up neck can create burns on the skin.  Think french fries and oil....

     

  • dales2loud
    dales2loud Member Posts: 45
    CherieLW said:

    More positive suggestions,

    More positive suggestions, thanks Tracy. I know I pray for him everyday sometimes several times.  I will certainly be praying for you and everyone else who has gone through this,  yet to go through it,  staff as you mentioned,  and anyone in my position feeling helpless for loved ones. 

    Just be there in good spirits for him!

    Nothing much to add but I'm sur your dad does not want to worry you, it's perfectly alright to be in a great mood. I never wanted my teenage daughter to have her summer taken away because of me. So be in a good mood, especially in the chemo room, that's where he'll be getting much needed fluids and probably 3 Chemo's. Try to have lots ofdifferent types of foofloor him to try because most likely he will loose or not have normal taste for awhile. Good luck, keep us up to date.

    Dale

  • hwt
    hwt Member Posts: 2,328 Member

    Just be there in good spirits for him!

    Nothing much to add but I'm sur your dad does not want to worry you, it's perfectly alright to be in a great mood. I never wanted my teenage daughter to have her summer taken away because of me. So be in a good mood, especially in the chemo room, that's where he'll be getting much needed fluids and probably 3 Chemo's. Try to have lots ofdifferent types of foofloor him to try because most likely he will loose or not have normal taste for awhile. Good luck, keep us up to date.

    Dale

    Harder on caregivers

    I think this tx can be just as hard for caregivers as it is for those of us going through it. I was told to imagine I was getting a facial when mask was made and that is exactly what it felt like. Radiation treatments only last about 15 minutes and are not painful. It's the side effects that cause problems. I had fatigue and sores on my lips. I started feeling better week 1 post tx and it continued to get better other than a bout with thrush. Week 5 post tx, I really turned the corner and week 6 had all of my energy back. My suggestion is to "take it as it comes and deal with it." Don't worry about side effects that may never happen. I'm confident your Dad will be riding his motorcycle for many years.

    Candi  

  • CajunEagle
    CajunEagle Member Posts: 408
    hwt said:

    Harder on caregivers

    I think this tx can be just as hard for caregivers as it is for those of us going through it. I was told to imagine I was getting a facial when mask was made and that is exactly what it felt like. Radiation treatments only last about 15 minutes and are not painful. It's the side effects that cause problems. I had fatigue and sores on my lips. I started feeling better week 1 post tx and it continued to get better other than a bout with thrush. Week 5 post tx, I really turned the corner and week 6 had all of my energy back. My suggestion is to "take it as it comes and deal with it." Don't worry about side effects that may never happen. I'm confident your Dad will be riding his motorcycle for many years.

    Candi  

    Images during rads.....

     

    Prior to every radidation session, I'd get out a scorecard of a golf course that I'd played in the past.  During the radiation treatment session, I would imagine playing that course.  Sessions usually last 15-17 minutes. 

    Larry

  • CherieLW
    CherieLW Member Posts: 472

    Just be there in good spirits for him!

    Nothing much to add but I'm sur your dad does not want to worry you, it's perfectly alright to be in a great mood. I never wanted my teenage daughter to have her summer taken away because of me. So be in a good mood, especially in the chemo room, that's where he'll be getting much needed fluids and probably 3 Chemo's. Try to have lots ofdifferent types of foofloor him to try because most likely he will loose or not have normal taste for awhile. Good luck, keep us up to date.

    Dale

    Thanks Dale! I'm trying to

    Thanks Dale! I'm trying to stay positive as my dad began his first trtmnt chem9 this morning.  I couldn't be there as I just x came back to work being off for weeks with broken leg.   :( going to see him tonite.  Thx for advice is appreciated. 

  • CherieLW
    CherieLW Member Posts: 472

    Images during rads.....

     

    Prior to every radidation session, I'd get out a scorecard of a golf course that I'd played in the past.  During the radiation treatment session, I would imagine playing that course.  Sessions usually last 15-17 minutes. 

    Larry

    Thanks Larry, great advice. 

    Thanks Larry, great advice.