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radiation masks

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

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. 

CivilMatt's picture
CivilMatt
Posts: 3057
Joined: May 2012

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's picture
CherieLW
Posts: 438
Joined: May 2013

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's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

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

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

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

phrannie51's picture
phrannie51
Posts: 3818
Joined: Mar 2012

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

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

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? 

phrannie51's picture
phrannie51
Posts: 3818
Joined: Mar 2012

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's picture
CherieLW
Posts: 438
Joined: May 2013

Great Phrannie, I'm going to look into that

CivilMatt's picture
CivilMatt
Posts: 3057
Joined: May 2012

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

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

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. . 

yensid683
Posts: 241
Joined: Apr 2012

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. 

At the same time, it was not comfortable.  The table is hard, they cover it with only a sheet, your shoulders are clamped down to help expose the throat area and immobilize you.  The mask holds you into a fixed position and tends to feel very tight.  The positive side of this is that these things are all done to make sure you're in the same position with the exact same exposure paths so that the radiation precisely targets the cancer to maximize the positive effects and minimize the negative.  It is a pain in the @@@ 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's picture
CherieLW
Posts: 438
Joined: May 2013

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.  

yensid683
Posts: 241
Joined: Apr 2012

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....

 

TracyLynn72's picture
TracyLynn72
Posts: 739
Joined: May 2013

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's picture
CherieLW
Posts: 438
Joined: May 2013

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. 

dales2loud's picture
dales2loud
Posts: 45
Joined: Sep 2011

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's picture
hwt
Posts: 1987
Joined: Jun 2012

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's picture
CajunEagle
Posts: 363
Joined: Oct 2009

 

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's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks Larry, great advice. 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks so much Candi! I am grateful for all the encouragement

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

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. 

hwt's picture
hwt
Posts: 1987
Joined: Jun 2012

Hopefully your Dad will do well with the chemo. It is very important for him to stay hydrated. Good nutrition and hydration will help him stay strong. Most don't seem to have allot of issues with their 1st chemo. I got dehydrated but a couple of days of stopping in for fluids helped. After that, the ONC cut my dose to half once a week and I didn't have any other problems with the Cisplatin. They have great anti-nausea drugs that really do work. I took them as directed and never once felt nauseated. 

 

TracyLynn72's picture
TracyLynn72
Posts: 739
Joined: May 2013

 

 

Wanted to see how your dad was doing after his first treatment.  Been thinking about y'all today! 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks Tracy!  Dad did really well, it went a lot better than I expected.  Even with everyones advice, it was still a little scary not knowing how he would react.  He hasn't felt naseaus or tired yet (although I know this is just the beginning).  After 6 hours of trtment yesterday he went to the new house to do some work.  Today he is out and about again!  I hope he keeps up staying busy as much as he can.  He's one tough guy! 

Using everyones advice and counting down!

1 chemo down, 2 to go

35 rads to go :(

One day at a time, with all your support I'm trying to stay as positive as I can!! Thanks!!  How is everyone else feeling today?  I hope well 

TracyLynn72's picture
TracyLynn72
Posts: 739
Joined: May 2013

Get that countdown going and it'll be over before you know it.  My mom kept telling me "look at how fast time goes by...hang in there and it'll be over soon"  and she was right. It seems like I just started my treatments...scared and with tears in my eyes, now after today I'm down to single digits!  That's good he's tough, he'll make it through!!  Staying busy was also good for me, it kept my mind occupied, just make sure he rests when he needs to.  I'm a bit stubborn about that and ended up in bed for a couple of days!  

 

Tell him we're all pulling for him (and you!) 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Tracy, thanks again! How much longer are you still doing treatment?  Thank god is almost over! I hope things are getting better for you.  Thinking and praying for you.  

Duggie88's picture
Duggie88
Posts: 555
Joined: Feb 2010

I still have my mask. I put it in a plastic bag my last day of being zapped March 30, 2010, put it on a shelf in the basement and haven't seen it since. Some day I will go down and pull it out swear a bit and put it back. My radiation treatments consisted of being zapped 13 times at 7 different stations probably lasting about 13 to 15 minutes. Occasionally I would close my eyes and think of one of my grandchildren while it was going on but I always new which station I was at and how many more zappings I had left. I was ready to give up after day 3 a Friday but Monday morning I drove the 148 mile roundtrip and vowed there was no way cancer was going to control or intimidate me. Like I do so many times on this site I humored my way throuh it.

Your Dad will find what works for him and if he needs help that is were we come in.

      Jeff

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Jeff,

Maybe one day you will break it.  I hope so.  Hope none of you ever have to experience it again. Dad has 35 rads, which I feel like is A LOT, but we will make it through it...  one day at a time.  Humor does help! I had dad over Saturday after we all went out to eat and we watched Horrible Bosses (a comedy) it was good to see him smiling! Now to stay doing well... I am positive my dad won't give up as much as he may want to.  His doc told him don't stop.  He knows that this is necessary. Thanks for the encouragement again!

HobbsDoggy
Posts: 165
Joined: Feb 2013

The thing that got to me the most was how tired I got as the radiation progressed.  I was not prepared for that and kept thinking something must be very wrong.  It is normal for many to be so tired that staying in bed becomes a major part of life.  It starts getting better a few weeks after the final radiation, but not right away and energy is slow to come back.  Faster for some than others.

I also was a little slow to take pain medication.  I did start out with fairly weak pain medication and it worked fine, I just should have started sooner.  Was going to be a tough guy, oh ya!

Scarry it sure is, but accepting that it is necessary really helped me.  I wanted to just stop a couple of times.  I kept reading on here how others made it though and that helped.  At the time it seemed like it the side effects would never end, they do/did slowly.  Not all of them so far for me, but the worst is over.

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

I'm trying to prepare myself for seeing some of these side effects.  My dad is one of those also- tough guys! ;)  For the past few years I've been subscribed to St. Judes website on facebook...somehow knowing if children can make it through this- I am trying to remain positive that everyone can!  So glad you pushed yourself through completing them.  Glad for you the worst is over!  I can't wait until I can say that about dad!

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