How did you deal with Mouth Sores?

[Michelle]

What Chemos gave you the worst Mouth Sores?
Did you do anything preventively?
What did you do once you already had them?

What foods were okay to eat when you had them?
What foods were NOT okay?

Any suggestions for those suffering through Mouth sores?

[Cari]

Mouth sores UGH!! Doxorubicin; Cisplatin; Ifosfamide and Etoposide all gave me mouth sores--it started off just one on one side of my mouth and I was very careful not to have food or drink go over to that side--but then I found out those were just the baby ones.  My doctor gave me a prescription for Daniel's Solution it is a mouth wash--I would swish before I started treatment during and then a day after--it tasted pretty good-except for during treatment it was hard to keep it in my mouth.--Things not to eat--sour things, things that need chewed anything that you would probably want to eat might be hard--popsicles were good-pudding-jello-icecream--
I also used a baby toothbrush with the very very soft brissles--my gums were very sensitive to my regular tooth brush and would casue more problems then what it was worth--the baby tooth brush actually felt good..
Sometimes-even if you take all the precaustions you still get them---I had them so bad once that both lips were swollen I couldn't talk-open my mouth eat or drink--touching the cup to my lip would be so painful it felt like I was pulling my lip off my face and then of course it would bleed and then swell more--I was in the hospital for 8 days that time--with IV fluids--because I had them in my throat to--I couldn't even swallow my own spit --during that time I had high fevers also--I couldn't even swallow childrens tylenol to try and get rid of the fevers--I almost chocked to death on it (scarey)---they had to cool me down by placing ice packs all over me----That was a major low--all of my counts were 0 and had been I think that is why I had such a severe reaction and the mouth sores from hell----NOrmally  I could control the issue with the mouth wash.

[Cathy]

My solution was called Swish and Swallow.  It was horrible.  Worse than the sores.  I don't have much memory of this part of my treatment.  I agree with Cari, I could not swallow anything but ice or a purple or orange popsicle (and that's after it melted some).  My husband and friends said my lips were black and torn during this episode of illness with mouth sores.  I think thrush was also a part of this.  Yuck, bad, bad memories.

[Mariana]

Huh.  Mouth sores.  I'm cringing right now.  Adriamycin,cisplatin and methotrexate were the culprits there.  I couldn't eat anything sour.  icecream helped...baby food was about all that I could eat and it would take me about 45 minutes to eat a medium jar.  there is this stuff called miracle mouth wash that helped me a lot made up of lidocaine and benadryl and maalox and that would give me about 20 minutes of relief so that it wouldn't hurt so much to eat.  Juices that helped were apricot and peach nectar oh and strawberry milkshakes from mcd's or jack in the box.  My problem was also that I would try to et muchy things like apple sauce, jello, icecream, my baby food, soups (whatever was soft) because my sores went through all  the way doen the digestive tract!  From beginning to END.  It was really painful to go to the bathroom so i had to have a lidocaine gel for downstairs too.  I would cry and cry.  The nurses would have to give me painkillers so that I could go to sleep.  AND what really helped was the salt and soda mouth rinses ALL THE TIME!!!  Like every 10 -15 minutes I was rinsing!

[Cari]

I had the sores all the way down the tract to Mariana!!!  Go to the bathroom was the scariest thing for me---I use to dispise it!  I didn't have anything to help with the ones down below--but I was always on stool softeners--when the sores broke out to that extent I usually wasn't able to eat or drink--most of the time I ended up in the hospital with IV fluids----BOY those were the worst days!!!!!!!!!!!!

[Mary]

I just read this message in another group.
-----

1. Peridex (chlorhexidine Gluconate 0.12%) she uses 5ml swishes and spits 4
times a day. This she uses to prevent mouthsores

2. L-Glutamine

Around this Northwest area L-Glutamine is being used more and more, by the
Oncologists, for treating and preventing mouth sores. My son had great
results with it. He could not stand the numbing and cleaning medicines
prescribed normally with chemo. His mouth sores were reduced by at least 75%
with this. The dosage he received was 1 tsp. three times a day, (at about
5,000 mg per tsp.) He mixed it with a little water or juice, swished
thoroughly, then swallowed. This takes it all the way through the digestive
system, which also can get mucositis, (sores.)

You can get this at some pharmacies, although it is quite expensive there.
After our first bottle ran out, I looked around for alternatives. At Vitamin
World I found it with a picture of a muscle-bound guy on the front. The
salesperson assured me, after calling their home office, that this was
pharmaceutical-grade quality, so I bought it to try. It seems to have worked
just as well as the more expensive stuff from the pharmacy.

--Vitamin World: 1-800-228-4533; www.vitaminworld.com

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Also, xxxxxx, who posts on this site, had some very good information, (I
don't know where she got it from,) that I will recopy here from her post
dated a few days ago:

"Glutamine supports the mucus lining of the mouth, throat, stomach, and
intestines. Studies at the University of Minnesota and the Mayo Clinic
showed that glutamine powder, swished in the mouth and then swallowed,
significatly decreased the incidence of mouth sores.

"This amino acid supports the lining of the intestinal tract and assures its
proper functioning. It is also used as a brain fuel. In addition, it has
been shown to increase the effectiveness of methotrexate. 'It is extremely
important for cancer patients undergoing conventional treatment to receive
glutamine supplements. We recommend the use of glutamine poweder in a
smoothie to protect the nervous system and the GI tract--one tesapoon
several times a day.'

"Before taking anything-----"ALWAYS ask the treating physician FIRST. He may
also be able to prescribe this for the patient.

"Link where they sell it on line:
http://www.myvitanet.com/glut500gram.html

3. STANDFORD MOUTHWASH or Miracle Mouthwash (a pharmacist will make it for you)
RX 374764 Silicon Valley RX

Tetracyclene Syrup     125mg/5ml    473 ml
Nystatin Syrup                120 ml
Hydrocortsone Acetate    500mg
Chlor Trimetin (?) Syrup    of 5 ad (?)    1000ml

[Arlene]

My culprits were the same as Marianna's. The combinations of those 3 chemos. I can remember one of the sadest moments. It was my birthday and I was in the hospital from being sick from all the crap. They said I had an infection and they couldn't figure out the right antibiotic. I was hooked up to 6 different anti biotics to figure out which was the cure. i finally had an infectus disease Dr. come in to figure it out. But back to the mouth sores. It was my birthday and my whole family came in with a cake. We all went in this private family room. Their were presants their and candles lit. I couldn't even blow out my candles , let alone have a piece of cake. I cried, cried  and cried. My mouth sore were excruciating. I got the same thing that Cathy got. It was called swish and swallow. I hated when then made me try to do that cuz I litterally couldn't open my mouth. As far as foods, the only thing That was at all a little possible was fraps or milkshakes. And even that was difficult. They also gave me some stuff to put on my lips. I had it so bad , it went from the lips to the throat. I don't wish that on anyone. hopefully now they've come up with something new.
Arlene

[Scott_06]

Oh, the sores! Stomatitis is the Devil! Since I had radiation to the head, that caused more and nastier ulcers than my chemo did. But neither were fun. With the radiation, the doc prescribed this stuff called Salicept, which was supposed to coat and not allow the ulcers to form as much. But I didn't think it worked all that well. When I was on chemo, the stuff I took was Carafate. Kind of too sweet and chalky, but I got used to it.

Yeah Cari, I was horrified to "take the Browns to the Superbowl"! It hurt so bad sometimes! I remember sitting on the toilet crying, shaking, and sweating.  I don't really know what all the constipation was from--maybe the narcotics, which tend to stop up my gut something awful.

I remember something that made my Mom cry  . I had a craving for Subway near the end of my radiation and when I opened my mouth wide to bite the big sandwich, my mouth split open and I got blood all over the bread. It hurt, but I ended up eating the whole thing because I am stubborn. Also, I used to love hot foods--jalapenos, habaneros, hot sauce, salsa. Bring 'em on! But the radiation and maybe the chemo sheds a lot of the epithelium in the mouth, and then even mild salsas caused me pain! Now I am back to where I can eat some spicy food, but not habaneros!

[Rene]

So far I've only got about 6 or 7 sores on my tongue about a week after chemo. They seem to come and go each day. Salty and sour food are not good for me. I love spicy food, but I'm trying to avoid it during chemo to prevent any problems. Thanks for posting all of the remedies everyone. I'm going to talk to my doc to see what he says about preventative for me. So far they gave me a recipe for a mouth rinse that included baking soda.

[Lisa]

I had mouth sores after my Adria/Cisplatin and Methotrexate chemos.  Sometimes it got so bad i could do nothing but carefully eat babyfood.  My oncologist prescribed Acyclovir to help keep them at bay, which kind of worked.  I also had use of Miracle Mouthwash and Miracle Mouthwash 2 (not sure what the difference was), and i was told to constantly rinse my mouth out and gargle with a gentle saltwater solution.  To help take the edge off the pain i would take 10mg of oxycodone and at night i'd spray orange flavored Chloroseptic and just drool it out.... I'm sure I looked as pathetic as could be... a towel tucked up under my mouth as i laid there and drooled all over it, but i found relief that way and didn't care!

[Tara]

I have a helpful tip shared by my grandmother - she had chemo for breast, then lung then small cell... she had tried it all.  She loved the miracle mouthwash and found that  if she swished a solution of 1/2 peroxide and 1/2 water several times per day on the days she took chemo, she was less likely to get mouth sores at all.  When I was going thru chemo, I had sores pretty bad and my uncle told me to try it, said Granny swore by it and she was right.  Also, it tastes pretty bad, but arm & hammer makes a toothpaste with DENTAL baking soda and peroxide in it.  It helps alot too.......just make sure you take your nausea meds 

[Cari]

Man I just read my post from earlier when this topic first came up...UGH!!!  HORRIBLE HORRIBLE HORRIBLE!!!!  I am amazed that I survived that--that we ALL survived that!!

[Larisa]

Yep, hydrogen peroxide worked for us very well.

[Mary]

This is reposted from the Ewing's group...

We've been talking about l-glutamine for years - about how it heals chemo-induced mouth sores (mucositis).

I'm reading the 2008 Vol. 10 DRUGTREND Report, and on page 63, table 17: Some ambulatory-use oncology agents in the pipeline.

"2009 L-glutamine suspension (Safaris) for Chemotherapy-induced mucositis."

What we've believed, known for years, used to help our children, and paid a couple of bucks for at GNC, will now be sold to the doctors as a prescriptive medicine.

They should have listened to us years ago and saved our children suffering.