So I'm done with radiation as many of you know and towards the end i developed mucositis. I'm still suffering with it. I feel like if it would just resolve I would be fine. I'd be able to speak and wouldn't be in constant pain. I almost never hear mucositis brought up so please please please share your experiences. This mucositis is killing me.

You use Magic Mouthwash and Cloraseptic right?

I tried many, many, many things - prescription and OTC. This is what worked for me:
1. Club Soda (Schweppes is my fave and I still use it)
2. Benzydamine (Prescription rinse)
3. OraJel. YES! OraJel It worked wonderfully (after the first scream) for sore spots on my tongue and lasted much longer to control the pain than anything else.

I wasn't sure which one of your threads to post this in. Maybe they should be merged?

Treatment of mucositis is mainly supportive. Oral hygiene is the mainstay of treatment; patients are encouraged to clean their mouth every four hours and at bedtime, more often if the mucositis becomes worse. Water-soluble jellies can be used to lubricate the mouth. Salt mouthwash can soothe the pain and keep food particles clear so as to avoid infection. Patients are also encouraged to drink plenty of liquids, at least three liters a day, and avoid alcohol. Citrus fruits, alcohol, and foods that are hot are all known to aggravate mucositis lesions. Medicinal mouthwashes may be used such as Chlorhexidine gluconate and viscous Lidocain for relief of pain. Palifermin is a human KGF (keratinocyte growth factor) that has shown to enhance epithelial cell proliferation, differentiation, and migration. Experimental therapies have been reported, including the use of cytokines and other modifiers of inflammation (e.g., IL-1, IL-11, TGF-beta3), amino acid supplementation (e.g., glutamine), vitamins, colony-stimulating factors, cryotherapy, and laser therapy. Symptomatic relief of the pain of oral mucositis may be provided by barrier protection agents such as concentrated oral gel products (e.g. Gelclair). Caphosol is a mouth rinse which has been shown to prevent and treat oral mucositis caused by radiation and high dose chemotherapy. MuGard is a FDA-approved mucoadhesive oral protectant, developed by Access Pharmaceuticals, Inc., that is designed to form a protective hydrogel coating over the oral mucosa while a patient is undergoing chemotherapy and/or radiotherapy cancer treatments to the head and neck.[10] Additionally, the efficacy of MuGard for the prevention or treatment of mucositis has been tested by a prospective, randomized clinical trial in which 43% of head and neck cancer patients using MuGard prophylactically never got oral mucositis. NeutraSal is an FDA-approved calcium phosphate mouth rinse which has been shown in a open-label, observational registry trial to prevent and reduce the severity of oral mucositis caused by radiation and high dose chemotherapy. In the trial, 56% of the radiotherapy patients reported 0 (WHO score) or no mucositis, which is significantly lower than historical rates.

Internet paragraph, hope this helps. Over the years we have discussed this with just about every "member of our little club" that receives rad. You are not alone and with just about everything else that can go wrong, each of us can fair differently. While I had about everything else go south with my Tx the 2 things that I faired better than most in were mucositis and sores on the outside of my neck. Go figure?

I know what it is David. I was looking to hear from people who experienced it what it was like for them how they dealt with it and what their healing time is.

Hi John. The radiation continues on even after treatments stop. My husband John unfortunately didn't notice any improvements the first month after treatments ended. Around 6 weeks out of treatment the mucus started to get better. By around month 2 the mucus was all but gone. John basically didn't try talking for a month because the mucus was so thick it would make him gag and throw up. He was on both Zofran and Compazine for the nausea during the first month after treatments ended. I know it is hard to be patient but only time will help heal the mouth sores, throat and tongue. You are through the worst and better days are ahead. Hang in there!

Thank you slim. If these damn sores would go away I'd be fine. I think it will be a week out of treatment this Thursday.
Im just so scared this is what life is now.

John

[quote]I almost never hear mucositis brought up so please please please share your experiences.[/quote] Just do a search on "mouth sores" in the search box to see other threads on this. (Use the quotation marks or you will get too many hits on mouth)
I do not recommend using mucositis as a search term since unlike yourself, the majority of posters on OCF (including myself at first) assumed it meant all the mucous issues. Mucositis has nothing at all to do with the thick mucous problem.
The main OCF page has a section on mucositis It is worth reading since it covers all the aspects including duration.
OCF- mucositis
The bad news /good news for you is this excerpt of OCF page
[quote]Younger patients tend to develop oral mucositis more often than older patients being treated for the same malignancy with the same regimen. This appears to be due to the more rapid rate of basal cell turnover ... However, the healing of oral mucositis is also more rapid in the younger age group.[/quote].
Magic mouthwash just made me sick so I used seltzer water and my mouth sores cleared up withing two weeks after TX.
You are doing great.
Charm

Charm- that gave me a lot of hope. Thank you. It means a lot especially since I'm having one of my more dark days. <3

My mom hadn't been warned about mucositis either, but about halfway through treatment she had a horrible case. Her radiation oncologist refused to treat her when he saw her, was afraid he was killing the flap from her surgery, so we rushed her to her surgeons who said it was just mucositis causing it to look so bad. At this point she had not been taking any pain meds so they put her on a fentanyl patch immediately. It was so painful she couldn't even drink water without it feeling like acid, so the painkillers were greatly welcomed. I wish we had known what was coming though, we had no idea and it was a real scare at that time. Thankfully it didn't take long for it to clear up.

It sounds like you've gotten a lot of great tips from others that have been through it. Hang in there, you have a great attitude and it sounds like you have done really well so far.

Mine was awful as well, it started around week 2 and didn't go away completely until around 6 weeks after treatment. All of my blisters around my gums merged together and pretty much formed one giant blister lining my gums... fun stuff. A dentist friend of mine gave me a very strong numbing gel that I would rub on my sores with a q-tip before I ate (or when the pain was unbearable). It would last about 20 minutes and seemed the only thing that would help alleviate my symptoms. Maybe ask your dental oncologist if there is anything he could give you?