mucositis

doitforoj

Hello Everyone, I am 13 rads in on 33 and 2nd chemo of three is on tuesday. Feel good except tongue hurts. I have mucositis. I can swallow but hurts. I still drink water and 3 shakes a day. I constantly rinse and gargle with water that has baking soda. Brunch often with biotine toothpaste and rinse and gargle with biotine. Anything else I should be doing to help with the mucositis? Also my neck and face are starting to redden up. I am putting Acquaphor lotion on it. Anything esle I can do to help the skin out?

Thanks,

Kurt

victor53

Hey man. Have you got the
Hey man. Have you got the Magic mouthwash i forget the 3 ingredients but its numbs you up pretty good i used it alot every couple hours swish and spit.
It relieves the tongue pain. And the liquid Roxicet was good for fast acting pain i did that stuff every 6 hours or so and Morphine ER every 12 hours. I believe in the stay ahead of the pain method. Getting off the stuff wasnt that bad i just cut back gradually over a couple months. I always washed with cetaphil soap in the shower .. I dont want to pull any punches with you ... its going to get worse for a while till a month after radiation ended for me... till i started feeling like i was getting better. Im a year and 1 month out and feeling great except when i let my mind worry me..

fishingirl

Hi Kurt!
For my neck and
Hi Kurt!

For my neck and side of face, I soaked up some gauze in saline water, and place it on for about 5 mins. a couple of times a day. It did help me:)

Fishingirl (Cindy)

robdad

mucous
Hi Kurt
My Drs perscribed a suction machine for the mucositis. I didn't think I needed it at first but finally got it and it was a lifesaver. I used it 4 or 5 times a day and 2 or 3 times in the night. Also used baking soda salt water as a rinse and spit. Carried it with me full time and I think that helped a lot. I used Jeans Cream on my neck and face. Carried a tube to radiation and put it on as soon as they were done. Water is huge. After drinking at least 2 liters a day for the 1st 3 weeks I slowly couldn't stand the taste. After 5 wks I stopped water. Got everything through the tube. Was constantly dehydrated. Had to have hydration at hospital before radiation. As long as you can get it down the better. I am 4 1/2 months past radiation and things are looking up. I wish you all the luck in the world. Hang in there.
Dave

fishingirl

robdad said:

mucous
Hi Kurt
My Drs perscribed a suction machine for the mucositis. I didn't think I needed it at first but finally got it and it was a lifesaver. I used it 4 or 5 times a day and 2 or 3 times in the night. Also used baking soda salt water as a rinse and spit. Carried it with me full time and I think that helped a lot. I used Jeans Cream on my neck and face. Carried a tube to radiation and put it on as soon as they were done. Water is huge. After drinking at least 2 liters a day for the 1st 3 weeks I slowly couldn't stand the taste. After 5 wks I stopped water. Got everything through the tube. Was constantly dehydrated. Had to have hydration at hospital before radiation. As long as you can get it down the better. I am 4 1/2 months past radiation and things are looking up. I wish you all the luck in the world. Hang in there.
Dave

Hi there!
How did the
Hi there!

How did the suction machine work? And where did you get it? Sounds like something I could use. Boy! Do I esver have mucos!!

I'n now 1 month since last treatment and I still haven't been able to eat anything except puddings. I'm hoping I will be able to soon:)

Cindy

Landranger25

robdad said:

mucous
Hi Kurt
My Drs perscribed a suction machine for the mucositis. I didn't think I needed it at first but finally got it and it was a lifesaver. I used it 4 or 5 times a day and 2 or 3 times in the night. Also used baking soda salt water as a rinse and spit. Carried it with me full time and I think that helped a lot. I used Jeans Cream on my neck and face. Carried a tube to radiation and put it on as soon as they were done. Water is huge. After drinking at least 2 liters a day for the 1st 3 weeks I slowly couldn't stand the taste. After 5 wks I stopped water. Got everything through the tube. Was constantly dehydrated. Had to have hydration at hospital before radiation. As long as you can get it down the better. I am 4 1/2 months past radiation and things are looking up. I wish you all the luck in the world. Hang in there.
Dave

Stay Tough
Kurt, you are almost at the 1/2 way point. As noted above, will probably get worse before it gets better but sounds like you are doing all the right things. When my neck got really bad from the radiation I applied some of the green aloe vera sunburn gel that had lidocaine in it, especially before bed. Stings a bit at first but within minutes feels good and the aloe helps your skin. Keep drinking! The low point for me was at the end of chemo 2. I had a toxic reaction to the chemo and they had to take the pump off 1 day early and because I felt so bad I let myself get dehydrated and had to have hydration for the next 3 days. It taught me a good lesson about the drinking and staying hydrated. I am glad to hear you are still drinking and doing the shakes. I think about you and your family often since you started treatment. Hang in there, there is a finish line for all this. I am now 6 weeks out since my last rad and saw the surgeon last Friday. I feel really good and the Doc said I am doing great. You can too! Keep grinding and all the best to you, your wife and the boys.

Mike

robdad

fishingirl said:

Hi there!
How did the
Hi there!

How did the suction machine work? And where did you get it? Sounds like something I could use. Boy! Do I esver have mucos!!

I'n now 1 month since last treatment and I still haven't been able to eat anything except puddings. I'm hoping I will be able to soon:)

Cindy

suction machine
Hi
I got the suction machine through a medical supply Co. My Oncologist ordered it and they delivered to my house. It is about 1 foot square with tubes and a container that you rinse out when it is full. You put the wand in your mouth and slowly work it back towards your throat. It sucks everything up. It is GROSS. I am so glad I had it though. I used it for the last 2 weeks of treatment and at least a month after. Its basically a rental. My insurance picked up most of it but I had to pay some. Well worth it. See if your Dr. can get you one or try a supply company on your own. The 1st 6 weeks after treatment for me were brutal as far as mucous goes. It was the # 1 problem. Used to wake up 10 times a night spitting it out. Now 4 1/2 months out and sleeping 6 hrs at one stretch. You'll get there soon. All my best wishes.
Dave

Hondo

Kurt

Glad to hear you are doing good, remember you are not alone we are all still here praying for you and wishing you the best. God bless

Scambuster

Glutamine Powder
Hi Kurt,

Craig here in China and in my 8th week out after 7 weeks of RT (IMRT) and Erbutux (Target Chemo). I went to a Naturopath before and during treatment and he put me onto Glutamine powder. It is great for mucositis and mouth pain. I couldn't drink plain purified water due to pain mainly on the tongue BUT add a teaspoon of Glutamine Powder to the glass of water and I could drink it.

I suggest you google Glutamine powder and get the information so you understand the benefits, then get the product. Most good health food stores should sell it. I generally take about 2 teaspoons a day but most literature says you cant really OD so you can load up on it quite safely. You can swish it around, leave in your mouth to sooth pain and swallow.

It's tasteless so you can put it with anything. It is a Primary Food Source (Amino Acid) so will have beneficial effect on you mouth, tongue, throat and entire digestive system.

You may find the pain will change and move around sometimes the sides of your tongue, the back, front, the whole thing, throat, cheeks etc so any relief will be welcome. Remember this will continue after treatment too so you will need something to help you through the pain post treatment.

During treatment the hospital gave a me big bottles of saline/baking soda mix (Brand name Baxter) and I rinsed a lot with that for relief too.

For the skin- I used RadioGel prescribed by my Oncologist. I didn't suffer too badly from the burn. Biotene toothpaste good choice. Their mouth moistening gel is also good.

Hope this helps. Let me if you try and how it goes.

Craig the Scambuster.