I'm writing another article about after-treatment issues for the OCF site--this time on mucositis. As with my recent article on anorexia, I would be very grateful for any insights any of you could provide to supplement the other research I'm doing.

Thanks so much.

John,

As you know our Tx can affect us all differently and after years on this site this topic is not complained about as much as the other common side effects of our radiation and chemo and not as much as I would have thought. For me this side effect was not as bad as others that linger and linger like dry mouth or lack of taste or the thick saliva period or the general weakness or the nausea or the effects of dehydration like constipation.

Hi John,

The mucositis was a massive issue for me during treatment and recovery. It came on strong by the 2nd week of radiation and chemo. My doctor called it confluent mucositis. The insides of my lips, the mucous membranes of my mouth, and the entirety of my tongue were coated in what looked to be a millimeter of white 'stuff.' There wasn't a patch of it, or a spot here and there, rather, an entire coating throughout my mouth...hence the confluence.

I had magic mouthwash consisting of Lidocaine, Benadryl, Maalox, and Nystatin that I could take before eating, but it got to the point where the pain combined with the mucus and excess saliva made it impossible to really eat and drink. These were the days I was 100% dependent on my PEG.

During good weeks, the pain would be a bit less or I'd be just stubborn enough that I could get down very bland foods like eggs or a soup broth. Usually the taste was absent/horrendous during this time. I found that things like milk products and creamy broths were what I could taste best, but all efforts failed when the mucus was so think that milk products could not get through and made the mucus worse.

The mucositis lasted weeks beyond the end of treatment and was a source of frustration for me. I had mentally prepared for 7 weeks of treatment but had no idea that my mouth would be beat up for even longer than that, after treatment.

The white "coating" ( i have no other way to describe this) began to denude after a few weeks post treatment. It first started clearing on the inner surface of my lips. Then I'd notice a red spot on my tongue, previously white, that was the raw new tongue underneath. I actually found that I digressed in terms of eating as the mucositis began to clear up. As the mucus in my throat cleared, I was able to eat more and more things even though my mouth was coated in mucositis. But as the mucositis cleared up, it left behind an extremely raw and sensitive tongue no longer protected by this white film....and I went backwards in terms of being able to eat. A few weeks post treatment, I was eating tender steak and soft bland foods. Then all of a sudden, these raw spots were expanding on my tongue and I couldn't put a thing in my mouth. I was again dependent on tube feeds. During all of my treatment, I took no pain medication since my surgery back in October, but around week 4 post treatment, the burn of my delicate tongue was so bad that I had to take some Vicodin at moments (put in my PEG). It was terribly discouraging.

I know everyone is different. For me, it took until about 6 weeks post treatment to be able to eat soft foods again upon taking some magic mouthwash. It was still very painful and tender, but I was eating through the pain and the burn as best I could. This is when I resorted to my waffle and french toast diet because they were bland foods, that were very soft when soaked in syrup and french toast batter. The burning on my tongue has gradually improved week by week. I ended treatment on 12/26/08 and am now eating an enormous variety of foods. I still use magic mouthwash. I still have random lingering spots of mucositis. But mostly, I have an extremely sensitive tongue that gets slightly better and less burny by the week.

As my tongue becomes less raw, I can also speak better. A huge impediment to my speech during all this time was the pain in my tongue to be moved the slightest amount. I was mostly mute for months and now am talking and understandable again.

That's my experience with mucositis.

Hope it helps!
Kristen

My experience with mucositis during and immediately after treatment was similar to that of kme05.

It has now been 20 months since I completed treatment. At a routine follow-up exam yesterday my ENT said there was still a lot of mucositis and the damage can be permanent. He has seen improvement up to 2 years post treatment.

Now I am able to eat almost enough to maintain my weight. I drink one can of Jevity 1.5 as a supplement. Eating is hard work and I don't have much taste. Soft, bland foods work best.

Bottom line, so far, I am cancer free. Life is good.

marilyn

Many thanks to Kristen, Marilyn and David for your helpful insights. I hope to have a first draft to post for your review within a few days.

Best wishes,

John

John,

I have another topic for you to consider...Thrush and the OC patient during and post Tx concerns with the onset of xerostomia.

David, we have had a thrush page up for several years, plus small piece on it on the dental complications page. You need to wander around the website some more.... There are areas that are empty and those are the ones that John, Gary, and one more writer from outside the OC commnity are working on.

http://www.oralcancerfoundation.org/dental/candida.htm

Brian,

I wish I had the time to wander around this site more but sometimes I forget how valuable this site is for it's published information.