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Radiation CARE advice PLEASE.

Clearblue
Posts: 188
Joined: Apr 2010

Hello everyone
My wife is about to have Radiation for pharingial 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.

Also any tips/recommendatiions to prepare in advance etc would be appreciated. I am very concerned about this.

Finally if anyone has tips regarding how to be an organized caregiver, like how do you organize info etcetc, id sppreciate it, as i get "flooded" easily

I all sincerity
Clear.

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

mucositis/mouth burns/teeth - see a good dentist before radiation starts, if possible; Salagen (Pilocarpine is the generic name) helps many with dry mouth (helps the best if you take it regularly - we shoot for 4 am, 10 am, 4 pm and 10 pm); Caphosol is the gold standard to strengthen teeth and prevent/heal mouth sores - our insurance covered most of it and 3-4x a day really helped; fluoride gel in trays - do this nightly and also use the trays during radiation without the fluoride; be on guard against thrush - rinse with water often, especially after eating/drinking and report any sore white patches asap to get treatment.

neck burns - shower with low-residue soap (like deodorant soap) 1-2 hours before radiation and use no creams/lotions until after radiation; Bert's Bees hand balm worked wonders for us - we tried to put it on within an hour after each radiation and again before bed; when the burns got bad, I first put on aloe/lidocaine gel (they sell it for sunburn) and let it dry before the Bert's Bees.

sore throat - magic mouthwash (the most common recipe is nystatin/benedryl/lidocaine) can really help - it only works for about 10 minutes but can make it possible to get pills down at least when things are bad; L-glutamine in water seems to help sooth radiation burned throats/mouths - we didn't know about this early on, but I started giving it to him near the end of treatment and it seemed to accelerate his healing - you can get the plain powder (I use Blue Bonnet) at health food stores, but Resource/Nestle also makes packets of L-glutamin and maltodextrin that are convenient (and expensive); Mirilax - she may get constipated from pain pills and dehydration, so she'll need this anyway and Doug found it easier to swallow water with Mirilax in it; ThickenUp (Resource/Nestle) - when his throat was barely working, this helped liquids go down the right way and they also hurt less than plain water/juice.

pain medicines - oxycontin worked the best for us, as the rest made Doug throw up. Fentanyl patches are helpful for those that can take them, as you don't have to swallow - have this talk about meds now rather than when she's in pain.

nutrition - get a sampler of the supplements now. Many really like Carnation Essentials Instant Breakfast - with whole milk, it's about 320 calories a cup. Boost Plus was the only thing Doug could tolerate - you can get chocolate and vanilla at CVS, but you can also get strawberry by mail order from Nestle (watch for coupons - they usually do free shipping and you can often get 10% or 20% off). Ensure Plus is another favorite. Resource/Nestle makes a high-protein juice-like drink (Breeze) that some like and it is not as thick and cloying as the milk-type supplements. If she is having trouble getting calories in, consider BeneCalorie (also Nestle) - it's casein suspended in safflower oil and you can stir it up with a bit of OJ - you'll get about 260 calories in about 6 oz of fluid and it also help coat the sore throat a bit. There's a thread on the H&N board that covers everyone's favorite recipes - Doug lived on homemade cream of carrot soup for a while (boil a bunch of carrots, throw them in a blender with cream and powdered milk, add salt if necessary and some of the cooking water if too thick). Try some of these things now, as her taste buds might change and it will help to choose her favorites ahead of time.

Radiation is very tiring - I planned for a good 2-hour nap for him about 2-3 hours after each treatment; this means you might need to get a head-start on eating early in the day and adjust meals to fit around nap time.

Last word - hydration. If she starts having trouble swallowing and is drinking less than recommended (about a quart or so) then ask about IV hydration - we did this late in the game and it made a huge difference, as it's hard to heal burns without adequate fluid levels in the body.

Clearblue
Posts: 188
Joined: Apr 2010

Doc
I am thankful for your response(& the only response from us needy caregivers)
I have just been given by the nurse here something called: Xclair cream: Generic Name: Sodium Hyaluronate) to be used for burning.
Anyone heard or used it?

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