Preparing for Radiation Treatment - What worked for you?

OKC,

Neck burn was my Achilles heel, (IT IS NOT EVERYONE’S),some H&N members barely get any burn.  For me it was difficualt, BUT Silver Sulfadiazine Cream to the rescue. With applications of this messy cream I was happy and without any pain.  I now have Turkey Neck and there is not much to do about it (sorry).  I used to tell the age of a person by their neck, now I question what I see.  Don’t worry chances are you will have minor irritation and will be fine with over the counter creams.

Teeth, my rad doc required a call from my dentist to discuss my teeth.  At 5+ years post, they are all still there.  I brush and use fluoride rinse.  There is a lot you can do, but I just try to stay on top of my teeth care.  My saliva glands have been compromised and I use 2 xylimelt tablets at bedtime for relief through the night.

I had 2 PEG tubes, 1 very bad, 1 very good.  I use to hang my Jevity high and gravity my meals.  I always consumed at least 1 meal a day  by mouth.  I also drank about 10 glasses of water daily, always.

I was mostly positive, I learned from the H&N members and not Doctor  Google.

Get a recliner, a ½ gallon pitcher for your salt and soda mixture, music for rads, nausea meds, pain meds, a variety of soft foods, various drinks, the closest infusion chair to the bathroom (chemo day), enjoy as much Happy Cancer Cake as you can.

You will do fine.

Matt

My husband was prescribed Gelclair, Aquaoral, and Magic Mouthwash. All require a prescription.

Aquaphor was the ointment our radiation oncologist recommended. They did prescribe Silvadene on the last day of radiation. They would not allow during treatment due to metal content which can cause radiation scatter.

The dentist had us use a water pic to help with cleaning. 

Baking Soda and Salt water solution was used continuously to rinse mouth. We did need to increase strength as mouth secreations intensified.

IV Fluid Hydration began at week three and continued three weeks post treatment. 

We also used Boost-Very High Calorie (530 calories / 8 oz) last three weeks of treatment and first three weeks post.

I wish you the very best.

Sara

I'm nearing my last week of radiation and let me tell you i've had to deal with the worst mucus ever. Started at about week four, i have so much mucus developing in the back of my mouth and throat that i am constantly spitting up. For a few weeks it made me gag i would throw up several times a day, now i am still dealing with the excess mucus but it has gotten a *little* better as i am not gagging near as much. (but still am)

I completely lost my taste buds so have a PEG tube i use 100% for both medicines and food. I do sip water throughout the day as i need too since i also have a very dry tongue. So strange to have dry tongue yet so much mucus...  and my throat gets dry to so i have to drink. Because of this i'm barely able to talk, my voice is all messed up from mucus/or lack of. It's a real pain.

I am taking guafinesin, dexamethasone for the mucus, i think it has helped a little bit. But everyone is different.

So far mouth sores haven't been an issue, though sometimes when i drink my throat hurts.

I am hoping these symptoms do not last much longer as they are quite miserable.

To answer some of your questions:

My neck got burned near collarbone area and they gave me these yellow/oily patches called Xiriform, you lay it over the burn and put a cover on it (its quite messy since it is oil). This has definitely helped me, my neck is looking ALOT better than it did last week. Other than that ive been told vanicream and aquaphor. Both are good, make sure you moisturize daily!!

I was told to do salt water+baking soda rinses up to 8 times a day, have not followed that at all, it doesn't seem to help but maybe its because im not doing it near enough?

Magic mouthwash i was told is benadryl and lidocaine mixed together? You just swish it in your mouth and it numbs it up for a short time. Helps if you get sores and i was told you can swallow some of it.

Glutamine! Its a protein powder that helps with mouth sores, muscle wasting and stomach ulcers. I would definitely reccommend getting this. I was told 30grams a day.

Stay hydrated! Water must become your best friend, especially if you end up vomitting. I sip water throughout the day but i also have iv fluids set up at home to use for days i feel dehydrated. Its not a bad thing to consider at home iv fluids, they do make me feel better when i get them!

I know the idea of a PEG tube is not ideal (i almost freaked when  they mentioned it) but now i realize how good of a thing it has been, for me radiation made me lose my taste buds so eating is not an option as food does not taste like food at ALL. You'll need to keep the calories up as radiation (i was told) makes your body 'work' all the time.  Oh and if you end up with trouble with vomiting suggest a food pump for feeding at night, that's how i get my calories in i run 4 cans of food throughout the night. That way i don't have to worry about throwing up my meals/losing calories. I stopped losing weight since i started the night feeding.

I'll admit i hate the PEG tube, actually i think its more i hate not being able to taste anything. I miss eating so much.

Not trying to sound discouraging but it *might* be a hard road ahead. I believe radiation is way worse than chemo but everyone reacts differently! I hope you don't have such a hard time with this as i did. Best of luck to you!

Sounds like you have done some great thinking.  At Stephenson you will see your RO and/or his PA and the RO nurse every week, usually but not always on Monday if you have Dr. B.  They work it in around your radiation schedule that day.  At that appointment they will offer you new tools to deal the side effects that are common to radiation.  They will give you different nonprescription things to use for throat pain, skin care and dental care every week.  We loved how no matter what new annoying symptom was happening they would give us something else to try.  You can ask for Magic Mouthwash and they will give you a script.  They are working toward getting an onsite pharmacy but we ended up having to use the pharmacy inside the OU Medical Center across the street. That's something that someone that goes with you can do for you is go to the pharmacy. Just a heads up we originally tried to use our family pharmacy at home but frustratingly we learned that more than one of the presciptions from the RO and the MO were not available at our neighborhood, local pharmacys.  Most were but we learned we could not predict it. The OU pharmacy had everything and they were used to filling the pain meds and other meds that Stephenson prescribes.  You will see your MO in clinic every two to three weeks and he reviews your labs every week.  They only call you if there is a concern.  You will have a standing order for labs.  We used our lab at home 80% of the time.  It is honestly easier if you use the lab at Stephenson, we wished in retrospect that we had.  Your MO does a lot of the managing of the pain meds, nausea meds and constipation interventions/preventions.  Ask them for what you need or think you might need coming up before your next appointment.  They can get you liquid forms of lots of the meds if you get to a point where swallowing is hard.  Also, at your first appointment with the MO make very sure you understand exactly the order of the pain and nausea meds.  I mean what med they want you to take first, then if that doesn't work what do you take next and so on.  Also, exactly what do they want you to do about constipation in what order, when and how often?  Be sure you write it down.  When you need this info, sometimes your recall is murky.  The MO will really be on you about not losing weight.  Be sure to notice if you have steroids that you are supposed to take for days following and/or before chemo.  The MO team should give you a script for those.  Those meds are dependent on your chemo regimen so you may or may not have them. You will see someone from speech path typically every week or so.  They will also work your appointment around your radiation and chemo schedule.  In fact, sometimes they will come to see you in the chemo suite.  Tracy, the speech path is amazing.  She is also someone with whom you can discuss issues you are having and she can sometimes facilitate getting answers or things you need.  She recommends using organic hot peach tea for throat care. We had to order it off of Amazon but you can probably get it locally.  Tracy was the one that put us on to a product called Mepilex for neck wound care.  It was amazing.  She gave us a sample and then we ordered it off of Amazon. Check carefully though there are lots of Mepilex products.  We used one that looked like a 4" X4" piece of foam, not bandages with Mepilex technology that are the same size.  He did not need it until near the end but everyone's skin responds differently.  Do be aware of what the staff that mans the IMRT machines tells you about using creams before your treatments.  When you have chemo, you can also let your nurse that day know if you are having any concerns.  They have a great PA, Michelle, in the chemo suite that can navigate getting scripts, answer questions or get changes/replacement for your side effect products if needed.  She had lots of great ideas for all kinds of issues that came up.  They provide your lunch on the day you have chemo.  Hopefully you will have someone going with you.  They can buy lunch and it will be delivered with yours but they charge the caregiver about 6-7 dollars for that lunch and you have to have cash.  They will offer both of you snacks and drinks all day, no charge.  We had a great dietician, Jenny.  They will give you lots of resources and direction for maintaining nutrition.  So you can see you will be having many opportunities to get support and ask questions.  Speak up.  Really you don't need to do a lot to prepare except enjoy yourself and have fun now which it sounds like you are doing because they do this all day every day and they will take care of you if you let them know what you need.  My husband worked most the first three-four weeks.  Less after that until then he could not work at all for a period of time.  That varies a lot from person to person and depending on your treatment protocol.  One last preparation thought, you will have days when you are perfectly fine to drive yourself to and from treatments but you may also have days when it is not a good idea to be driving because of treatment side effects and/or meds.  Just think that through with your wife as sometimes you may lack self awareness of your capacity.  You will not have the reserves you are used to having once you get into treatment.  Hopefully, you will sail through the treatments easily.  Take fluids every time they offer them to you.  It prevents a lot of problems.  My husband did not go in for them the first round of chemo and later regretted it.  You have a big week coming up.  Positive thoughts your way.

psychedoutca said:

Great advice

Yup, all gave sage advice for radiation roller-coaster.  The tube was a must for my husband and we waited until a week before radiation started, best move ever, he really needed it. All the advice, medications etc, great advice. Mucus was the worst at the end. I had my husband ask for a suction machine that he carried in a backpack and that helped significantly. some insurances cover it, may give that a try. Also invest in the cloth bed pads for when you sleep so as to keep all the slaves, medication from the burns stuck to you not your sheets. aquaphor  spectacular and we still use it regularly Even two years from radiation. All of the exercises the speech therapist etc says to do, actually do them, this is so important for later on with the induration, opening your mouth, etc. Have a good caregiver to help you through, radition was exponentially more difficult for my husband than the chemo was. Good luck hope to continue to see your progress on the boards! 

I completely forgot to mention that I had a rental suction machine.  I probably had it two months and needed it about two or three weeks, but it was a huge help, HUGE when the mucus and phlegm just got to be too much.

It's funny the parts you remember so vividly and the parts you don't.  The good news is that for many of us, the parts all get better.