Mucositis - help

After my first infusion of AVBD last week, I had intense mucositis for about 3 days. The doc tells me it will likely get worse. Gotta say, that's not what I wanted to hear.

Any advice or experiences to share? I have 11 more infusions - don't know how I'm going to deal with this if it gets worse.

Janie,

I'm sorry you have to experience this. I don't have any experience with mucositis so far. I just had my second infusion of ABVD a week ago.

My only advise is to hang in there. I do experience other side effects and know exactly how you feel thinking that you won't be able to go through this.

Stay stong. We will beat this!

Kama

hi Janie-
is that all your doc said, that it'll get worse? I would expect more!

first let's talk about what's causing the mucositis- the mucous membranes in your mouth/digestive system are inflamed and easily irritated because the layer of cells normally there and functional have been killed by chemo. the good news is that these cells typically grow back quickly-- otherwise they wouldn't be as sensitive to chemo.

one way to combat this is through good oral hygiene, although you have to go very gentle on your mouth- don't use alcohol-based mouthwash or toothbrushes with hard bristles. you don't want to cause your mouth to bleed, esp if you're low on platelets. this is something you can maintain leading up to chemo and post-chemo.

post-chemo, avoid spicy foods and citrusy drinks, but stay well hydrated. avoiding water will only exacerbate the problem.

Ross

Hi Janie,
I haven't had mucositis yet, but my nurse (she had breast cancer) told me day one to use baking soda to rinse my mouth out before and after meals- it will keep your mouth clean and neutralizes some of the acid in your mouth. I feel like it has helped alot, and she found it extremely helpful when she went through treatment.
I keep some baking soda in a plastic bag in my purse along with a small plastic container to fill with water so I can rinse anywhere-

kmelick-
the baking soda is a good suggestion. a book I often mention at this site (The Chemotherapy Survival Guide 3rd ed) recommends the following solution for a mouthwash:

Mix a half-teaspoon of baking soda and a half-cup of warm water and use it as a rinse- for example if you've vomited, this mixture can cut the acidity in your mouth-- and as a mouthwash after eating, since it cleans your mouth without harming it like an alcohol-based mouthwash would.

Ross

Hey Janie,
I'm with you all the way, I had the same thing during my treatment and it was horrid. All along the side of your mouth is so painful. Even drinking wasn't easy.
I would love to tell you something a little more hopeful but I can tell you that mine got better. Although other side effects from chemo either stayed the same or got worse, the mucositis was one thing which got better after the first chemo. It was still present on my last one but not as badly.
I'll shuffle around in my treatment diary and see what I used to combat it. In the mean time, Ross's conncotion sounds devine.
Stay in touch. Annie.

Thank you guys! The baking soda rinse is helping a lot. I've also got this prescription stuff called Magic Mouthwash that numbs me for a little while. It's not as bad this time around, so drinking isn't so hard. I've had a little more queasiness this time around, but I'll take it over the mucositis!

Best of luck dealing with your mucositis. It was very severe for me, and one of the worst parts of chemo, especially as it affects the entire digestive tract. Slippery Elm Bark Lozenges are vailable at most drug stores and are a great and natural mouth and throat soother. For mouth pain, ask your dentist for some Gelclair. This is a heavenly coating for your mouth.

Once the sores get into your throat, you will need that cocktail, which it sounds like you have. Also, Vicodin is a necessity once the pain level gets really high.

Once things get to your stomach, you will have that awful sensation of your stomach eating itself. In addition to popping Pepcid, get a prescription for Carafate, it's a wonderful coating for your stomach.

Finally, for your gut pain and cramps, drink a glass of Aloe Vera juice twice a day, and get a prescription for Belladonna for those curl-up-and die cramps, which I hope you never get.

Read a more full description at: http://azam.org/archives/chemo.html

Good luck!

My son suffered horriably with this every month (6) - starting in his mouth all the way through his digestive system. The pain in his stomach was awful. He was on prescription Pepcid and something else for his stomach, stool softeners, and metamucil. They gave him a prescription mouthwash and he only used supersoft toothbrushes changing them weekly. He could hardly stand up the pain was so bad from his behind. He looked like a broken old bald man. Heartbreaking to see your 19 year old that way. He had an infection month 1 from it and was in the hospital for 6 days getting antibiotics for everthing before they got the right one. Soaking in a warm tub helped and using preparation H moist towlettes. He had a powdered antibiotic we had to put on his behind. He did not lose his sense of humor - calling it "monkeybutt" Sorry if that offends anyone. It is amazing what the human body can bear.

I know it sounds odd, but some drs. recommend orajel to numb if it affects your behind. I hope that you do not go through this each time.

If you are having a lot of problems with mouth sores and etc. I suggest asking your doctor about acyclovir medication, that is what I used during ABVD chemo. It really worked for me. Also anyone who is taking the neulasta shots I really feel for you. I took a ibuprofen pill and a claritin allergy pill right before the shot and it really helped with the back spasms I was having. I had read totry this somewhere and the doctor said it would not hurt to try it. Hopes all this helps anyone in need.