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I need advice for simulation & for radiation

Clearblue
Posts: 188
Joined: Apr 2010

1.My wife is going on monday 24 for simulation, as its called here, for Radiation.
That includes measuremnts etc for her mask i assume.
Is there anything we should do/ask/tell/request?

2. She will have Radiation for Hypopharynx cancer.SHe will have neck and throat Rad down to the aaesophagus.

I would really like to have a list of the type of effects (mucositis, skin burns,mucus etc etc and how you or care nurses treated this.ie: names of medicines/creams etc) I really need a practical list so i can cross check and bounce of our medical team.

3.Are there any tips/recommendatiions to prepare in advance?

Finally if anyone has tips regarding how to be an organized caregiver,: like waht was important to you in the care you received i would appreciate it, as i get "flooded" easily

I know this is a lot
In all sincerity
Clear.

Yours
Clear.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Clear, not much to advise for sim. It will give your wife an idea of what a treatment will be like, and that's a lot of the reason for it. The mask, I assume, is already made.
If like mine it was "draped" over her face and allowed to form to the shape of her face. Make sure the eye sections aren't concave, that is, pushing into her eyelids when it's strapped on. Mine were and it left me bleary for thirty minutes after two treatments. I had them cut out the eye sections to fix it. The mask will seem to fit un-naturally tight at first.

Also make sure your wife has faith in the techs. By that I mean if she is having a problem, she needs to know they will be with her right now to fix the problem, or get the mask off. Once I believed that, things went fine. If your wife is like most of us, after a few sessions, she will learn to lose the time by concentrating on the movements of the machine, other thoughts, etc., so it gets easier. But it's hard to believe that the first time or two, so make sure she and her techs are on the same page.

Best of luck to both of you, Hal

Hondo's picture
Hondo
Posts: 5843
Joined: Apr 2009

Glad to hear from you again my friend. I agree with Hal my first mask was pulled over my head and stretch over my face it was very uncomfortable for the hold treatment. But when I did it for the second time I made them put big hole in the eyes and mouth that sure made putting it on a lot easy for me to ware everyday for treatment.

All the best to you and your wife in prayer and thoughts
Hondo

MarineE5
Posts: 757
Joined: Dec 2005

Clear,

The first fitting will be much like Hal mentioned. Your wife will lay on the table and have a Mask frame set on her and pinned onto the table. It will feel snug at first and as she is laying there, they will more then likely do a CAT Scan as well. The CAT Scan is a prelude to the Radiation treatments as a Medical Physicist and Radiation Oncologist will map out a plan for the computer to pin point the targeted area to be treated. The fitting and Cat Scan should last about 30 minutes or so.

I my case, it was several weeks after the Cat Scan and fitting before I started my Radiation treatments. That was because the Physicist and Radiation Oncologist took that long to plan the treatment after viewing the CAT Scan, I had the IMRT. As Hal mentioned, your wife can ask to have the eye area and lip area cut out and removed to relief some of the pressure against her face.

My Best to Both of You and Everyone Here

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

I sent you some recommendations for general care as you requested on the caregivers board - if she has trays already for fluoride, ask if she can wear them during the fitting, as she should wear them during the radiation (unless the doctor has a good reason to avoid them). If she doesn't have trays and you have time to run out and get a sports mouthguard, ask if she can wear that during the fitting, as some folks have used those successfully.

She might not need them during the fitting - Doug doesn't remember if he used his then - but some radiation techs won't let you wear them during radiation unless you wore them to get the mask made, as they say it will change the fit.

Unless she has no fillings or caps/crowns, the radiation can get reflected and cause worse mouth burns - Doug's mouth is full of metal, so this was a major help - he got one bad sore on his tongue and that was it.

harper rose's picture
harper rose
Posts: 13
Joined: Jan 2011

I had the techs cut the eye and mouth area out of my mask, which gave immediate pressure relief. The edges of the cuts on the mask were sharp, so they fully taped all the edges for me. Also, my mask was very tight at the top of my breast bone, as in,'I couldn't take a breath'!! So the techs removed a shim from underneath whatever I was laying on. What ever happens, just remember to talk to everyone, they will help her...and keep talking and asking questions until she is comfortable with all the procedures. None of this is fun, but it is doable.

Keep us posted, we are here to help and support. Hugs, HR

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Added things that applied with me....

I have fillings and crowns, no problem there with me.

I also had to have at least two made. The original was made prior to me having nine weeks of chemo, and the tumor still in my throat. By the time I started rads, I had lost weight and the tumor was gone, so the mask didn't fit right.

If she has any anxiety about it, she might get something for that up front.

I had anxiety the entire nine weeks leading up to the rads at the thought of wearing that mask. She'll know by the end of her simulation & fit..

For me the drug of choice was Xanax.. It didn't incapacitate me, actually I drove myself to and from the majority of all of my rads.

It did take the edge off of the anxiety. I only needed the Xanax for about a week. After the 2nd day I pinched them in half, then halfed that again after a few days...By the end of the first week, I was used to the routine and didn't need the Xanax any longer..

Speaking of routine, she'll get used to the noises, position, pulsed and every rotation very fast...LOL, we all do.

Another idea is to have her bring her favorite CD. They all have music or a player available...again, after about four songs your done...helps a lot at first especially in figuring about how long you have left...

I mentioned about cutting the eyes ir nose out..my facility wasn't too keen on that and I never really mentioned it again.

Have her dress comfortable, I wore a tshirt and shorts for all of mine. It's usually cool in the room, and they more than likely will have a warm blanket for her upon request.

Best,
John

mixleader
Posts: 267
Joined: Oct 2010

I found the mask to be very confining and I freaked at the first treatment (twice) and I had to have Ativan to calm me down. This helped and I continued to take one before each treatment just to make sure I could do it. I had to adjust my breathing each time to calm myself as well and I found that I had to nose breathe. If I felt stuffy, I would use some nasal spray just before the treatment. During the treatment, I would close my eyes and go to my 'happy place' and I quickly learned to count how many times the accelerator would start up to judge when I was done or nearly done. The techs that did my treatments were a wonderful group of people that did their best to make me feel comfortable. I met with the rad oncologist once each week and I was told that I could call at any time for help or advice. I knew this would be tough, but I kept thinking about all of the other people who had done it, and that helped give me strength to get through. Good luck to you. You can get through this.

Roger

GraceLibby's picture
GraceLibby
Posts: 88
Joined: Jul 2010

The one thing I would add, I had to change into a gown as I had a registration mark on my chest that the techs needed to use to line me up. Under the gown, I wore a low cut camisole as the neck of the t-shirt was too high.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

And a fancy little black target dot tattoo'ed somewhere below the breasts. I had to drop the gown down to the tattoo in order for the technicians to line up the machine. All modesty vanishes in a situation like that...

deb

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Everyone here has covered it pretty well. The one point I can add (from my vast experience of having two masks made) is that the making of the mask was far worse than the wearing of it every day. For me, there was something especially claustrophobic about them placing that wet, warm slab of mesh on my face (they have to soften it in a hot water bath), and my having to lie absolutely still while it shrunk down around me, AND while the technician pressed it in close around my eyes, nose and chin. Eeeeeeek. I felt as though the wet mesh was very difficult to breathe through. When I went in for the actual radiation treatments, the dry, firm mesh seemed a lot easier to bear.

Best of luck to you and your wife on this terrible journey.

Deb

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Ditto to a lot of the above. If it is intolerable, then your wife has to pinpoint the area(s) that's the problem, tell the techs about, and get it corrected.

Also, the two things that made the difference for me were: 1) 1/2-tab of Xanax about 30-minutes before each rad session; and, 2)keeping my mouth in an overbite position, with my top teeth in front of my lowers, for some reason helped with the breathing and swallowing between actual zappings, Bigtime.

kcass

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

hey Clearblue!
I had no idea what to expect when I went in for my simulation, but it was just a run through(they had already made my mask...if they haven't then they will make it and give her a little tattoo). make sure she wears no jewelry or clothes with metal. she should wear a shirt where they can easily see the tattoo. they will have her lay down on the table, just like she would for the scan...they will essentially do a test run on the computer, they will run a CT scan to make sure everything is lined up correctly, then they will run the computer through the scan but without the radiation. It will take close to the amount of time that the treatments will take. it is easy and straight forward. I listened to music that I liked before hand...with a good beat, it put me in a happy place before I went in. oh and I don't know how long her hair is, but however it was draped for the making of the mold is how she will need to have it for the simulation and the treatments...my mask felt too loose when I didn't pile my hair up under my head...I had to pile it that way for each treatment.
for you...radiation will be tough on her, but make sure she rests. I needed a nap right after treatment beginning on day one...by the end I was spending most of my time sleeping. if she has any pain, call the doctor, they will give her something to help with the pain...pain slows down healing. to help keep depression away...find one task around the house that she has to do every day. for me it was get my kids ready for school...I would wake up, get them dressed and pack their lunch boxes. my mom would drive my son to pre-k and then come back and get my daughter for children's day out. The baby and I would go with them, then I would have my treatment and i would go home, eat/ drink my lunch, then I would nap until they would be back home...I had to be awake to give them hugs and hear about their day...then I would go back to sleep. it gave me something to look forward to, a reason to not spend all day in bed...I had a hard time eating and would eat by myself in my bed, but having to get up and get the kids ready really kept me motivated.
wishing you and your wife the best.
huge hugs and prayers heading your way!

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

They don't actually do that to everyone....

I never received one for example. What they did for me was to take an exact measurment of the mask positioning each day of rads. They measured it to the millimeter....

Just an another example where even though things are similar, they are diferent in minute ways also.

JG

MarineE5
Posts: 757
Joined: Dec 2005

John,

I was like you, I did not receive a Tattoo. There was a Mark placed on my Mask for the Tech's to line up with the Machine each day that I had treatment. I also received a 5 minute CAT Scan each Monday to make sure my Target area was the same as well. They made adjustments if needed.

My Best to Everyone Here

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Only I think they actually shot an X-Ray versus a CT....

JG

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

wow! yeah, mine was different...I have this little dot tattoo and they did a CT scan every day to double check before they began. but they were mostly working on doing the radiation on the roof of my mouth and my sinuses. they had to get very close to my eyes and my ears and brain...lots of differences! :) I love hearing how everyone's treatment was different! al depends on the doctors, areas being treated and the type of tumor being treated!

Clearblue
Posts: 188
Joined: Apr 2010

Hi there
Thanks to you all and good to have your responses. Nice to know that the "oldies" Skiffin, Hondo who introduced me to this site, Hal, Marine,Deb, Kent C and others still remember me.

My wife wants to know what happens if she coughs,
or wheather she'll be able to cough at all.
(She coughs quite a bit owing to past partial larengectomy surgeries.)Any thoughts , experiences?

Clear

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Hi Clear. Hoping you got my last private message. Coughing is not exactly easy. I learned to kind of clear my throat and swallow during. They told me if it got too bad to give them the 'hi sign' and they would stop if absolutely necessary. I came close a couple times but pushed through it.

I didn't need to put a gown on. Just make sure my tattoo, right in the middle, under my breasts was accessible for them to line me up. I also had bulls eyes and target marks on my mask. It was freezing in the room so they always had a blanket ready for me with my mask.

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

LOL, all of those scenarios went through my head at one time or another during treatment....luckily I never encountered them in reality.

Like Dawn mentioned though, they do monitor you and can see and hear you. They always told me that if anything ever comes up, give them the high sign and they'd me in there in a matter of seconds.

They did kind of shake my confidense once though. My CD stuck and kept making this awful hammering sound for about 10 minutes straight. I never gave them the sign, but it did make me wonder if they could really hear me, LOL...

JG

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

X-rays every Wednesday - I hated Wednesdays because it meant more time with the mask.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Yeah. They did X-rays once a week for me too. I don't remember the day tho. It did make it like five to ten minutes longer.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Did maybe 4 times for me- always on Friday. Same amount of time as was Sweet's.

kcass

Army_Guy's picture
Army_Guy
Posts: 53
Joined: Oct 2010

The simulation (or fitting) was kinda like getting "waterboarded", but I tolerated it. I meditated during the treatments and it helped a lot. To echo most everyone else, we all become familar with the "sounds" and movements of the machine and table. I also used a mantra with my meditation that helped. Once each treatment was over I immediately went to the locker room and put alcohol-free (white) Aloe on my neck to mitigate radiation sunburn. It helped quite a bit. When my treatments were completed and I was home recuperating I used a product called "Aquafore"; it's a vaseline-like product and I lathered my neck with it every day. After about a week the skin quit peeling and the redness went away; neck looks pretty good now for an old guy (see my photo taken x-mas eve 2010). Hope this helps.

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