7 weeks down and finished - some thoughts on what worked for me....

Just finished 33 radiation and 7 weekly chemo (cisplatin) today and am the proud new owner of a radiation mask, a lei and diploma given to me by the radiation staff. 

I wanted to share some of my prep work as the doctors both said that I was lucky enough to be in the top 1% for how well I have held up during the treatments. I hope some of what worked for me will be useful to others.

Started using glutamine after my second radiation. Everything I read (of course a bit late) said to start with glutamine 2 weeks prior to and throughout treatment and then 2 weeks after finishing treatment. I used it 2x per day - 10 grams mixed in about 3-4 oz. of water each time - swished in mouth and swallowed. I did before radiation  in am and then around 7pm at night. I did not have any sores in my mouth other than a few recurring blood blisters underneath and at the base of my tongue. None popped and they came and went with no problems. Have  barely used MMW, choosing instead to take Oxy Codon in the pm only when going to bed.

For my dry mouth at night, I found that a dab of biotene Oral Balance gel on my tongue that I swished around my mouth, kept my moist moist for a number of hours, as long as I kept my mouth closed as much as possible.

I only got one area of radiation burn the last few days of treatment. Doc gave me Calmoseptine to put on it - I did not remove it for the last 2 rad treatments. It is a **** to get off the skin. I used Miaderm throughout my treatment and my neck barely got red - highly recommended. Docs and rad techs said that were amazed at how well my neck held up.

I had been told to swish a salt/baking soda solution 6-9x per day. After the 2nd week, I found that the salt dried out my mouth terribly and I got thrush. Stopped using the solution with salt and used just baking soda and did 2-4x per day with no problems. Visited my dentist 1/2 way thru treatment and he thought all looked as well as it could.

As far as eating, I was on a liquid diet by the 3rd or 4th week. I have been religious with my throat exercises pretty much and decided that bits of food going down my throat might cause more problems with creating sore spots and make it possibly harder to clean my teeth. I am still swallowing a little and have not lost my voice (although it is raspy). Also taking fiber thru my tube 2x per day. 

i hope the next 3-4 weeks will start to make my life easier! Has not been fun with diarrhea and early terrible bout with constipation, the constant mucus (although per one recommendation, I stopped used milk with my Scandiishakes and used soy milk for protein instead - had less mucus). Also found that the product called Resource, upset my stomach and stopped using It and have been using Scandishake almost exclusively.

Looking forward to seeing the fatigue go away and putting on some weight. I started at 200 lbs - I was very fit when I started treatment (am sure that must have helped) and have lost 20 lbs.

i hope some of this is helpful to others - sorry to ramble on! Will update in a few weeks as to my progress.

The very best to all of you out there dealing with this! Let's all get better soon so we can move on with our normal lives......Aloha!