So Im starting week 3, and as expected, the other shoe has dropped as far as symptoms. The sore throat is here and I developed mouth sores over the weekend. Im doing the baking soda rinses, have Magic Mouthwash (which is gross but works) and have a narcotic for if needed (not yet). I was just looking for any thoughts on things that really helped those who had mucositis, any pointers etc? What an unpleasant thing! Im still able to drink shakes at this point, so no PEG yet. Thanks in advance!

Keep rinsing your mouth at least 4 times per day with the warm water, baking soda and salt mixture. Unfortunately it will be a while before your mouth gets better and the sores go away.

I was given NeutraSal samples at the Proton center, which is a prescription powder rinse you mix in 1oz of water, that helps with dry mouth and mucocitis, and everyday my mouth was sprayed by the nurse there, which helped with that, and thrush, which may occur with the mucocitis. In the past, I used Glutamine powder, and one is made by Abbott called Juven, which helps in tissue building, and taste like Gatorade, and aloe vera juice, the distilled type, helps in healing.

I hope this helps.

Another is Gabopentin, which I used for neuropathy, was studied for radiation induced mucocitis, and found to be helpful.

I had it, but it didn't get bad until week 6 of treatment; then it stuck around for a good month after treatment ended.

Some things aggravated it more than others; iced tea really made it flare up. Though milk felt soothing to drink with meals I've heard it also makes the mucositis worse.

Fortunately all I needed to get through it was oral lidocaine, and then mostly before meals (and sometimes also during middle of a meal).

I did keep a small bottle of it in the car so I had it available whenever away from home.

take care, you will get through this.

Tony

I was prescribed Caphosol mouthwashes. They told me something about replacing damaged calcium ions in the cells in my mouth. I don't really know much about it, but that and Difflam were the only products I could bear. Even water hurt, but Caphosol didn't hurt.

Hey Tony .. Did you take the lidocaine straight from the bottle to swash in or did you do the mixture ? My husband is doing the mixture ;magic mouth wash ) it's not helping at all he don't have sores only rawness on the roof of the mouth ..

Just wanted to update that I'm 5.5 weeks out and my mucositis is now healed :-)
Taste is super funky but overall I'm so much better. I can talk yay! And drink shakes without narcotics. Progress is slow but definitely happening now.....
Thanks for the encouragement!

Great update. Things are going well for you at only 5 weeks post. Keep eating as much as you can even though the lack of taste makes eating a pleasureless chore.

Your taste should improve.

My surgery was December and my radio finished in March. I can taste most savoury things, and they are fairly similar to how they used to taste

Sweet things aren't so good. Most are bland and some are vile - strawberry is awful!

BUT at least savoury stuff is relatively ok. Coffee is fantastic, especially strong and with real cream.

I was always addicted to strong tea, but I don't like tea anymore. Be prepared for some surprises!

Cold custard tastes wonderful.

Cold milk is also fab.

Your taste can play tricks on you. Things can change taste from mouthful to mouthful. I'm working on thin pur�e at the moment; at the start I can taste things well, say soup, but halfway through my taste wanes and disappears.

My nurse said it can take a good 18 months to all settle down.

xx

My taste and saliva came backl in spurts at 4 month post Tx, 5 months, a great improvement at 14 m onths and a tad more at 24 months. Takes many months for your body to heal from this horrific treatment.

Thanks all. Sounds depressingly like taste can take awhile. Luckily my shakes taste fine (sweet seems better for me?). Salt is totally missing which ruins all normal food. Anyway, it's still so early; I just need to learn patience! So glad to hear of so many of u doing well overall!

I was never a big sweets eater but like you post Tx and even today my sweet taste is the strongest so now I'm a BIG fan of anything sweet.

I had a problem with tasting sweet for several years, especially in fruits. It's finally starting to come back, three years after radiation. I found sea salt, like pink Himalayan, to taste better than regular table salt, but still have a problem with salt either being too little or too much. I still ask others to taste my food to see what they taste, food needs.