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?
Mine was horrible!! I drink it was almost 5 weeks out before I felt like I was turning a real corner. I see that you are in NYC- not sure of you are being treated at Sloan, but the second floor nurses there sprayed my mouth out everyday during treatment & a couple times a week after treatment for about a month. It felt so good. As the sores diminished, I was able to use the dab on lidocaine to get by & eat (soft, wet stuff) more comfortably.
I wish you a quick recovery-- that 1-1 1/2 mos post treatment were so tough- but you will get more comfortable!!
All my best!
Sally
[quote=Shauneen]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?[/quote] how did you use the club soda?
mucositis is temporary right? I'm just do scared this is going to be forever. That I'll never talk again.
Yes this is temporary but like everything else with this Tx, each of us can react differently. I walked around for a couple of weeks with a styrofoam cup in my pocket which I would constantly spit that crap in. I would wake up multiple times during the night and run to the sink, not thinking I would make it. Everytime I would have to spit I feared that it would trigger a gag reflex causing me to toss my cookies which as you know is very painful during this time. I don't remember anything working especially well for me but I do remember one day waking up and it was gone for good and I believe it lasted about 2 weeks or so.
[quote=John of arc]how did you use the club soda?[/quote]I just swished it around and eventually swallowed it. If the bubbles bother you - just use it flat. I imagine it's similar to the baking soda/salt rinse, but handier as you don't have to make it or spit it out.
Even now, I find it helps with dry mouth and cutting mucous. I take a couple of cans with me when I go out.
My radiologist told me to use it. I think a few people here use it too.
So *knock on wood* I think I'm through the toughest part. My tongue is virtually in no pain. It's just a little sore sometime.
No I have like way too much thick saliva I have to spit out every couple of minutes. Will this go away?
The thick rope like salivia is going to hang around for a couple weeks. It can be hard to get that out of your throat, so please be cautious. A waterpic can help also a suction machine can be rented from a medical supply company with a prescription from your doctor. Rinsing your mouth frequently with the warm water/baking soda/salt mixture can help. Others have found success with the seltzer water. This phase is usually a couple weeks and like turning off a light switch it just abruptly ends to then turn into something else.
The next phase will hang around longer than the thick gunk phase. This is all part of the healing process. You may have noticed alot of us have mentioned 'carrying a water bottle'. This is due to the dry mouth phase. It can quickly get painful if you dont immediately take a sip of water when you feel your mouth is dry. Some members have to take saligen or pilocarpine to help produce saliva. Thats a prescription medication, it didnt work for me. It only made me sweat excessively and in the summer for a woman it was horrible! Most patients get past the dry mouth phase after a couple months. For many of us we continue to carry a drink around equally out of habit as to still having a bit lower saliva than pre cancer tx.
Hang in there, you are doing great!!!!
Here is a link to another thread about the thick ropey saliva problem....
Ropey Saliva thread
Well it isn't unbearable. It's just thicker than my normal salvia and I feel like it gathers in my mouth really fast.
Not looking forward to the dry mouth phase. But I'm
Happy to be almost completely out of pain. Its hard to talk with all the salvia but when I clear it out I can talk for a little while.
The only real problem I'm having is sometimes at night my tongue gets stuck to the top of mouth and I'm partially asleep so I just kind of rip it off and then the top of my tongue is raw.
Could be the dry mouth stage is beginning. I had to carry a water bottle with me everywhere I went and I kept a bottle in EVERY room of my house and office. I couldn't walk 3 feet before I needed another sip. I also kept multiple bottles in my car as I would always forget them in stores. Also DO NOT eat shelled peanuts during this phase. Seriously I love those things and I was in my MIL's backyard doing some yard work and I left my bottle in the front yard. Anyway she had a bag of peanuts to feed the squrils so I took one. I thought I was going to need EMS and it seemed to take forever to get to my bottle. But I degress...Be patient as the DM phase can last a very long time.
Definitely not dry yet. And even before any Of this happened to me I always carried around a water bottle. I drink like a fish normally. So that won't be a big adjustment. I'm hoping when I hit the dry mouth phase I'll finally be able to talk normally again. I can talk now if I thoroughly rinse my mouth out. I'm glad the sores went away. But I won't be satasfied until I can communicate again.
No one has had speaking issues with this?
I lost my voice for about a week. My wife still talks about that?
My son lost his voice, too for about a week or two but developed his own sign language which his 5-year-old daughter and I quickly adapted to - like thumbs up or down for yes/now, shrug shoulders (I'don't know), etc. I would just ask him yes/no questions or "choice" questions so he could pick #1, 2 or 3. There were some funny moments too, which of course I tried not to let him see me smile or laugh, like when he got so upset with me, and waving his arms around excitedly for not understanding something he was trying to communicate. My son used the Magic Mouthwash which worked for a while and then he went to a Walgreen store brand which worked, too. Then when he started on Magic Mouthwash again it worked. So there are different things you can try if one doesn't work. Glad to hear the mouth sores went away. Hope you continue with more improvements.
How long did the thick salvia last? The thick salvia didn't make it difficult for anyone to speak?
My husband John couldn't talk for around 4 - 6 weeks because he would gag and throw up from the mucus. He was on both Zofran and Compazine for the nausea. It will get better but it takes time. I kept a journal and I checked it and 2 months out of treatment John was talking again and the mucus was gone. Hang in there! Wanda
John I left you a long message in the other forum... I too used to gag and spit it up. I could talk but didn't because it was so gross. It lasts for a month or so. I still have some. but mostly it's a like a post nasal drip at the back of my throat now so it doesn't bother me much. a drink usually rinses it away. After this comes the dry mouth... im an actor.. try doing a monologue and having your mouth dry out.
;o)
[quote=Cheryld]John I left you a long message in the other forum... I too used to gag and spit it up. I could talk but didn't because it was so gross. It lasts for a month or so. I still have some. but mostly it's a like a post nasal drip at the back of my throat now so it doesn't bother me much. a drink usually rinses it away. After this comes the dry mouth... im an actor.. try doing a monologue and having your mouth dry out.
;o) [/quote]
I'm an actor too. Little worried about how singing will work.
There are things you can do to help dry mouth a bit - biotene - olive oil - eventually you may get some saliva back but it's a long road. AnneO is a vocal teacher she may have some pointers - I muddle though though I do find the biotene does help. I'll so etimes use it during an audition. Take care..
[quote=John of arc]I'm an actor too. Little worried about how singing will work. [/quote]
My wife has a restaurant customer that had OC 15 years ago and received the standard RT, which is way way worse than IMRT and he produces no saliva and carries a water bottle around his neck everywhere he goes. I am surprised what he eats when in the restaurant but even more surprised when he told me that he still sings in his church choir.
I am a believer in both the salt/soda rinse and the club soda. There was not much out there that would cut the mucous the same way and the constant flushing would feel good as well as heal the mouth sores. I am almost six weeks out of treatment with sore throat issues that are difficult to address but the mouth sores were cleared up at the 4/5 week period and the thick green phlem replaced with normal phlem like mucous in back of throat. Mostly when eating or drinking. The pain in throat has increased slightly in the past week so I've increased my breakthrough pain meds. It has impacted my eating but I'm no longer choking and feeling sick from the mucositis. I have learned this is not the Rabbits race, but the tortoises. Slow but steady wins the race.
I'm having one of those days where I just don't think it's going to get better. I just want to talk
It WILL get better, John. Everyone has days where it seems to take forever to see progress. You've had such good suggestions already. My son had a really tough time of it, too. It's a slow, slow process of trying different things to see what works. After the Magic Mouthwash quit working for my son, he tried something else and then when he returned to the MM, it started working again! Try to think of even the very small positive steps in the progress already made and concentrate on more of those happening. You will talk again! Just hang in there for a little bit.