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If you knew then what you know now...

Vee1
Posts: 59
Joined: Nov 2012

Hello All,

My dad is getting ready for radiation and I need your help. What "tricks" or "tips" do you wish you'd known about earlier in your treatment?

Was there something that actually made eating...skin care...or treatment just a little easier?

The "packing list" has been great and the discussion on Mugard.

Any and all advice is appreciated.

Thanks and God bless.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

When he misses a radiation treatment because of a machine break or malfunction don't waste any time stressing over it as it will not diminish the end result. My best wishes for you both.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Dress comfortable...

I wore soft cotton T-Shirts or Tank Tops, loose shorts and slip off sneakers.

Take a music CD with you, and most places let you leave it there. By the 4 - 5 song, treatment is over. Otherwise with no time reference, it seems like forever.

Rest and Hydration....

These are the days like the movie, "GroundHog's Day"...same thing day, after day, after day. after day.....

Best,
John

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

the biggest for me would be

ask, demand IV fluids. seems to me after listening to almost everyone in our local group that getting IV fluids every other day, fridays for sure, and some got them every day. the results were a huge benefit in many ways.

no way can we drink enough to match what iv fluids can do

john

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

the biggest for me would be

ask, demand IV fluids. seems to me after listening to almost everyone in our local group that getting IV fluids every other day, fridays for sure, and some got them every day. the results were a huge benefit in many ways.

no way can we drink enough to match what iv fluids can do

john

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

forum before I started treatment, so had many things on hand. Aquafor, Calendula cream, Aloe99 for my skin were already in my cupboard.

I got the Mugard by the 3rd day of rads...for my mouth. I had a quart of soda/salt and water mixed and sitting on the counter...also for my mouth.

I didn't have much pain eating during rads, but did have dry mouth...on hand I had Ensure, and Instant Breakfast VHC in order to get nutrition down quickly and efficiently. Tho I ate food mostly until the after the third week of radiation.

LOTS of water...I had to go get hydrated only once during treatment (but that was after radiation was over, and I was still doing chemo). I got hydrated everyday before radiation due to the fact that I was getting Amifostine, so that probably saved me from dehydration during those 7 weeks.

p

CivilMatt's picture
CivilMatt
Posts: 3085
Joined: May 2012

Vee 1,

Welcome to the group of H&N veterans. All good answers up to here, clothing , music, hydration.

Don’t be afraid to ask to take off the mask for a refit, it can help a lot. Wiggle your face and face muscles around to make the mask fit snug and comfortable. Toward the end of treatments when my throat was terrible I raised my hands just prior to the first zap, took the mask off, got up got multiple drinks of water, swished out my mouth and started over again. The techs did not mind (they loved me).

I had a helper named MS Lorazapam, 1 tablet and I was more relaxed.

For me it was a whole procedure, take 1 Lorazapam 30 minutes (precisely) prior, park in the lot, take a swig of magic mouth wash, use the rest room, rinse my mouth, walk to rad room, rinse, swish and spit (one last time), lay down, fit the mask and zap away. The zap away is a whole other procedure.

You‘ll get use to it, it is not fun, but I can look back now as some interesting parts.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

I got the Lorazipam at the Onc's office during the Amifostine treatment...before I left the Onc's office, I'd pee...then once in the car on the way to rads, I'd spray some Stoppers 4 into my mouth. In the parking lot, I'd do some deep breathing to relax even more...I used to get all stressed out at the Onc's office because they HAD to give the Amifostine exactly 30 minutes before I left, and sometimes they were running late...wore me out...also the bathroom at the Onc's office is a very busy place because of the other folks getting hydration and chemo :)...sometimes it was race to get in there and still be on time at rads.

Your radiation people were nicer than ours...here they didn't like it when the schedule might get tinkered with....such as getting up to get a drink, going to the bathroom....or being late because the Onc's office was behind.

p

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

Get to know your techs, I saw the same ones every nite, my rads were at 7pm, for 7 1/2 weeks. If anything feels uncomfortable tell them, they are there to help you, for me (I know this sounds strange) if the mask didn't sit right on the left side of my nose I had them re-do. I had a ritual as well, quick sip of water and a spray of stoppers4. As for the mask , that was my biggest concern , once the tech cut the eyes out for me, it was easy.

As for eating, I lost my taste around week 3, but I continued to each regardless, adding boost and ensure to the diet to keep up the calories.

No major burn to the rad site, both sides of my neck, more like a moderate sunburn. I found the unscented aloe gel worked best for me.

Linda

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

the effects build up slowly, and they cook for a long time. ain't no hurrying recovery from radiation.

didn't have much trouble with actual radiation sessions, except that I had two sessions every friday, with six hrs. of hanging around in between--meh. found a place where I could nap and read longmire murder mysteries.
my technicians were terrific--one was a breast cancer survivor who'd been there. she still wore her wig.

the worst for me was nights during the last week or 10 days of radiation: was vomiting mucous 2-3 times a night. tried a few prescriptions, but nothing really worked except to finish radiation. ativan did help me sleep. and the constant spitting of mucous all day long--get a bucket or set up camp in the bathroom.
the second-degree burn on my neck didn't show up until two weeks after rads ended. docs gave me silver sulfadiazine for the burn.

magic mouthwash (lidocain) for mouth pain. xylimelts help with dry mouth. matt put me onto those, and I still use them.
that's about it. wouldn't plan too far ahead. your Dad may not have all the same issues, and you can deal with them as they come up.

best wishes, douglas

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Wish I had known how tired I would be. There were days mid-way through that I slept at least 20 hours a day. I got up to eat and forced a brief walk daily. I really think that forced walk helped me recover post tx. By week 5 post I turned the corner and week 6 post tx had all my energy back. The actual tx was a push to get there but it only lasted 15 minutes and the mask never made me anxious. I was happy when I got the 9am time slot so I could get it over early in the day. I did not have the mucous issues. My neck turned dark and peeled post tx but never hurt. I did have horrific sores on my lips through out tx that were painful. I took the anti-nausea meds as directed and never got nauseated. Be aware of what could be a side effect, you just won't know which ones will affect your Dad until they do. Don't spend energy worrying about all that could happen just take them as they come. Make certain your Dad feels steady upon standing before walking. Wishes for an easy journey. Stay hydrated!!!
Candi

Vee1
Posts: 59
Joined: Nov 2012

I can't thank you enough for your ideas. I am relieved to know I am doing some of them (like preparing to have Mugard, creams, comfy clothes, etc) but your advice is priceless.

I am so, so thankful for your input.

Sparky boy
Posts: 3
Joined: Dec 2012

Hi Vee I am in Australia things may vary but the basics are I was advised to have a Peg tube before start of treatment which is standard in Australia,keep well Hydrated,use 100%Sorbolene Creme twice a day 2 hours before treatmen[not sure if called same in USA,Google??]I found soup or broth and pure yogurt a help and cool showers for 15 minutes over treatment area,and Bi carbonite soda 1 tablespoon in glass warm water as many times a day as possible,most important positive outlook because although its cancer it's got one of the best cure rates,good luck cheers.

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

1/2 tab of Xanax around 30-minutes before the scheduled rad session did me a lotta good. I also found that holding my mouth so the teeth were in an overbite position, and breathing thru my mouth helped. Would NOT advise doing Morph before a rad- I did and it kinda freaked me out.

My rad technicians had a local rock station on most every day, but it was always background music to me. I got zapped in 20 places/session, and used to count them off one by one everytime the buzzing stopped and I heard the blaster move to another position. Oh- such fun!

Lot of us get burned at the base of the hairline in the back. I cut the collar off a couple shirts, and use Aquaphor. Phrannie and the more current bus people know of other lotions to use, and some may be better.

kcass

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