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Mucositis

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

hello everyone - I have a question. Has anyone here had mucositis? Has anyone had it almost a year out of treatment? I have been diagnosed with Trush a few times since treatment was over. but now I don't think I have thrush I think I have mucositis. I have been reading about all the symptoms and I have them all except it sound like it happens right after treatment not 10 months post treatment. Lots of things are uncomfortable to eat. My tongue burns whenever I eat anything with even a small amount of spice, same with soda. I feel it's getting worse. Any advice besides brushing more frequently - been taking probiotics for about a month and it's not helping.i don't know what to do

shugytx
Posts: 9
Joined: Oct 2013

 this might help reBalance ca ph balance oral rince cancer patiance only www.vaxcopharma.com and acts for dry mouth .i did not eat spice no pepper no starch every thing i used to like i did not like.  broild fish. and meat i liked no spice iam 2 years jan cancer free.  just know getting some taste back still dont like my favorite  things still every body reacts different to treatment.it will get better slowley.GOD bless        

KTeacher
Posts: 894
Joined: Jan 2011

I haven't had anything spicy since August, 2010.  When spice is accidently put on my food (but Mom it was just a little pepper, or it wasn't hot to me) I really cannot eat because of the burn.  I have learned to like cooking with herbs to add flavor to my food.

TracyLynn72's picture
TracyLynn72
Posts: 648
Joined: May 2013

I'm 4 months out of treatment and I'm eating pretty well.  I seem to not like the same foods but I thought a Canjun Fillet biscuit sounded just great.  It physically hurt when I ate that first bite.  Any spicy chicken or spicy ANYTHING makes my mouth hurt, I feel puffy in my jaw, and my eyes and nose run.  I tried a soft drink and it almost choked me.  The carbonation made me react almost like the spice did. Not worth it.  I wake up with my throat FULL of the thick stuff and it takes about an hour before I can get it all up or speak where you can understand me. My nose is stuffy pretty much all the time, but I've gotten used to that. I'm sorry I have no real advice, but I wanted you to know that I've heard of all of this poppiing up months after treatment.  I'm sorry you're having to go through this. 

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

I can't tolerate the least bit of spice.  Or carbonation.  Or mouthwash, even the non alcohol kind.  I accept now that may never get better, as I'm coming up on two years out.  Mucositis literally means inflammation of the mucous membrane.  While that term is appropriate for during treatment, I'm not as comfortable with its use afterwards.  I think a lot of us are simply stuck with this problem, that takes a long long time to get better. 

 

Pat

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

has said, I guess many of us are in the same boat.  Smile  I can't do any of the things I used to love, anymore....I miss ketchup & mustard on my burgers!!  Not that I can get a whole burger down, but I wish I could have a little condiment for the first three bites!  Mexican food tastes like only spice, and of course no more salsa....I used to drink a diet A & W Rootbeer every day, but they too, are out....

I can't cook very well, anymore either....my taste buds give up the ghost about 3 "tastes" in, so I can't tell if there is enough salt...well, I can't tell how it tastes at all....hubby got the shock of his life the first few times I cooked after treatment....LOL....like so salty his lips got puckered up.  I've quit trying to taste things, and just let him do his own S and P....cuz I do better with bland...

p

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

In reading through the different experiences described in this discussion thread, I wondered if the lingering oral membrane inflammation (which some patients have and others don't) might be related to the specific location of the cancer within the oral cavity and the focused radiation on that area... for instance tonsils vs tongue vs back of throat.  I also wonder if the more recent availability of MuGard and other new membrane protective coatings might prevent some of these burning sensations related to spicy food in the long-term as well as mouth sores in the short-term.  I makes me sad to read that some of you are having so much discomfort when trying to enjoy your favorite foods a long time after completing treatments.  

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Hey,

You are right, most get muscocitis and most get it during treatments and some after but a year out seems rather unusual. Many ulcers and sores and very sensitive tongue lesions were attributed to mucocisits in my case. Very painful while present.

Even after the mucositis abated, my taste was hypersensitive to tastes. Any salt was just too much and like you and many, any spice was too much. Soda was fine with me.

Now, at 5 months post, my taste is finally feeling about 80% of the good old days. In other words, bring on the spice and plenty of it. My wife and I went to a very authentic pakistani / Punjabi diner (i.e. superior quality and taste, zero ambiance) and the normal level of spice is pretty explosive. This was the first time since starting treatment where I was able to enjoy the blast of spices and not have my head turn into a leaking fire hydrant, dripping water all over my head. This is a MAJOR milestone in my recovery!

While I battled mucositis was mouth rinsing often with lukewarm baking soda/salt mixture. Also, I would rinse (never swallow) with hydrogen peroxide. There was a dental paste that I applied to open ulcers and such. Liquid lidocaine offered some temporary relief.

Good luck. don 

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