Questions:
(Note, will ask the doctor the same questions today but this group has *lived* it.)

The radiation burns on my neck are pretty bad. On day 22/30 of treatment. In addition to aquaphor, any other topical you recommend?

I have two large sores on either side of my tongue under the gum line. They don't hurt unless I eat/drink something acidic but I am worried about them getting bigger. What is the usual protocol for treating sores?

My positive attitude took a massive hit this week. Wanted to quit treatment. Afraid of the two weeks after the end of treatment if I feel so badly now.

Still able to swallow and have maintained weight. Drinking more than 3 quarts of water a day but losing all interest in food. Switching to homemade protein shakes for 2 meals.

Stef

Couple of things -

The sores may get "bigger" but also my increase in number. Try a salt water rinse with warm water several times a day. Also ask your doctor(s) for a medicated mouth rinse with lidicade (sp) That will help

Radiation burns / irritations - try any type of topical creams with vitamin E and aloe. Stay away from soaps that dry out your skin

These are just some rocks in the road. Nothing more. Nothing less. Focus on the destination, (becoming cancer free), and these obstacles will become minor annoyances. Unfortunately, you will encounter more issues before the healing and recovery starts. Bear down and get through it.

Good Luck - (You can do it!)

Stef, Im going to be brutally honest with you about your questions. I have more faith that you can get thru this than you do. Ive watched hundreds of patients struggle thru and you are one of the luckier ones who has done very well with their intake so you've had it easier than most.

Ask for a prescription for beta-val cream. Pat it on a thin coat and allow it to soak in. Never apply this or any ointment before going into rads treatment.

Mouth sores can hurt like heck!!! Get some manuka honey (number 12 or higher) from any health food store or higher end grocery store in the natural section. Ive even seen this by the peanut butter and jelly section in the grocery store. Rinse 4+ times a day with a mixture of one cup warm water, 1 tsp baking soda and 1 tsp salt. The salt will probably burn your mouth (you can cut it back to 1/4 tsp or omit it) but it helps with healing so try your very best to keep some salt in the mixture. Swish it around for one minute and spit it out. If the mouth sores hurt, ask for a prescription for magic mouthwash (MM). Thats to numb your mouth to help enable you to eat better or for when your mouth is really hurting. Swish the MM in your mouth for at least a minute then spit it out. Some directions may say to swallow it but DONT!!! You do not want your throat to go numb which could cause you huge problems with aspiration pneumonia.

Ready for the brutal honesty, well here it comes...... Quitting??? NO WAY!!!!! This is NOT an option so put that right out of your mind. I thought I'd quit too but nope, my son and nurse wouldnt allow it. If you are planning on quitting, the cancer will probably come back. Why have you gone thru everything you already have to only pack it in and quit now? You can NOT quit or this could turn into a disease that cant be cured. Why? All because you are concerned about the future and what happens after you finish. First, you cant predict the future and worrying about it never has changed it at all. Focus on what is within your control... your intake!!!! Thats the single biggest thing you can do to make it as easy as possible. You are only getting 30 rads, that in itself should make this easier on you than if you had to get 35 or even worse 40 treatments.

Everybody needs a reason to get up in the morning, some sort of purpose in life. Begin to make plans for down the road when you are better. If you like Halloween, make plans for something fun around the end of Oct. Thats the first fun holiday after you finish rads and you will be far enough into your recovery where you should feel pretty good. Then by Thanksgiving you should be so much past where food has no taste. You should be able to enjoy a nice home-cooked Thanksgiving meal. Then Christmas and New Years where you can say goodbye to 2017 and cancer treatments. By then you will be doing GREAT So start making your plans for a happy, healthy future If you find you are still dwelling on negatives, try a hobby to keep busy and talk to yoru doc about anxiety meds to temporarily help get you thru some rough days.

You CAN do this!!!! I know you can

For the burns on the neck, I have found that saline soaks are very effective. Soak a clean J cloth in saline (the kind you buy in a bottle at the drugstore), put it on the burns for about 50 minutes, pat dry gently and put the cream on it, then cover with a non-stick bandage. Do this three or four times a day. The more diligent you do the saline soaks, the less chance of their becoming infected. The RO also said it's important to put cream in the folds of the skin if that's where the burns are.

Your feeling down is probably the result of your being on an emotional rollercoaster. OC does that to people. A small setback and tip you over. The best is to focus on the small things rather than the big picture. If you manage to get some food down, think of it as an accomplishment, which it is. Don't set ambitious goals. Deal with the small things and tell yourself you're grateful that you managed that. This does make a difference how you will feel. If the depression hits you hard, make sure you let your doctor know. Therapy at the hospital or some anti-anxiety medication will likely help in the short term.

Thanks all. I really appreciate your taking the time to reply to me.

The team was surprised by how red my neck had gotten - and asymmetrically. My regular doctor is out of town and the replacement doctor was great. She figured out a sore on the side of my tongue was due to secondary ionization from a gold crown that isn't covered during radiation.

My partner asked about stopping or doing fewer treatments and the doctor was calm but firm citing the literature. The she looked at me and said, "you've come this far. Keep going"

I forgot to ask about the asymmetry (have been assuming it's due to the face they are giving my a higher does on the side that had the primary tumor and metastatic lymph node) and sent an email after the visit.

Eating and hydration were evaluated as good; I am identical to the weight I was at my first pre surgery visit (this is because I put on extra weight between surgery and radiation.) Christine put me on the right track with eating and hydration. and I haven't deviated. My speech and swallowing pathologist who I visited earlier in the day said I was doing well. I can't emphasize enough to anyone just starting radiation how important the neck, tongue, and swallowing exercises are. She also contradiated my regular radiation oncologist by saying in her opinion I have no restrictions as long as I cut things small, chew very wel, and drink a lot of liquids with the food.

The other things they mentioned:
- sleep is unlikely to help me with the fatigue at this point
- if I can "change my view" at least a few times a day - go outside, go see a movie, watch people at an indoor mall - or should improve my mood. Not so sure how that works but I will give it a shot.

8 more treatments to go. I know I have it much easier than so many other folks; sorry to complain. I promise to pay it forward.

I know you had been feeling a bit low but now you have seen your specialists, you should feel better. Their great exams should boost your self confidence. You are doing EXCELLENT!!!! Not losing any weight is practically unheard of with OC patients who have completed 22 rads.

Watch yourself with crowds. Your resistance may be low and you do not want to pick up anything from crowds. Hand sanitizer is your new BFF... take it everywhere you go and use often. Avoid anyone who is sick, even a common cold can make you very ill so be cautious when going out.

Keep up the good work and hang in there!!!

Oh! One thing I forgot to mention. A few of the ulcers are due to secondary electron scattering from a gold tooth cap I have. My RO was out of town this week and another RO caught it.

She came into my session yesterday and showed the techs how to put a medical wax on my tooth. When 7 sessions left they decided to not recast the dental appliance.