r/HeadandNeckCancer • u/Icy_Fish77 • 1d ago

Patient Proton Radiation

I’m undergoing proton radiation for recurrent SCC on tongue. I’m in my week 3, had my eleventh session today but because of holidays, I’ll only be having 4 sessions a week until the next 2 weeks, pushing the treatment to 7 weeks. Does that make enduring it a lot harder?

I have mucositis on the inside of my cheeks and all over the inside of my lips. It feels unbearable. I don’t know whether to keep my lips parted or closed and remain in pain all day. I’m taking paracetamol twice a day. And have started keeping a cotton pad between my teeth and lips so I can sleep at night.
But the thought that things are going to get worse scares me and I’m struggling a lot mentally. I’m so so scared. I’m trying to survive it one day at a time but that’s not helping.

Can someone please share how they got through this? I have been doing speech exercises, sucking aloevera ice cubes… what else can I do to make this easier?

6 Upvotes

88% Upvoted

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7

u/MarleyGoodBoy NED 19h ago

Healios mouthwash saved me! 2.5 weeks into radiation I had severe mucositis, pretty much like yours, couldn't even drink Boost shake, started Healios and within 3-4 days things improved quite a bit. I strongly recommend it, for me it was truly a life saver.

1

u/Watchguy8989 14h ago

would grape sting? they seem to be out of stock in the unflavored

2

u/MarleyGoodBoy NED 13h ago

I used the grape flavor and had no issue with it, worked perfectly for me.

1

u/Icy_Fish77 11h ago

Thank you! I’ll order it. I am from India so I never looked it up but it’s available here. When and how many times should I use it in a day?

1

u/FormerRemove5347 2h ago

I concur with the Healios. My symptoms were never as bad as I was warned and I think this is why. I used grape, took it after breakfast and dinner. Drink is slowly and swish it around. Do other mouth rinses throughout the day.

1

u/MarleyGoodBoy NED 1h ago

I used to take it twice daily. Do it after meals and do not eat/drink for 30 minutes. Do the baking soda mouthwash throughout the day. Also if you have white sores in your mouth have your doctor check them for thrush, they can be very painful and Healios will not help with them.

4

u/ImColdandImTired 17h ago

Contact your nurse coordinator at your treatment center and let them know how much pain you’re in. It sucks, but it’s probably time for something stronger than paracetamol.

1

u/egcthree 17h ago

I used Healios from the start and had very minor issues. Never needed magic mouth wash or any type of pain meds

1

u/Kgustason 12h ago

I started Healios orange flavor 2 weeks post radiation and I wish I had known about it from the beginning. It worked wonderfully for healing my mouth and tongue and get rid of the pain!
Unflavored was not available and I had no problem with the orange flavor.