I feel sort of guilty about yesterday’s blog post. Well, maybe not guilty, but I certainly feel like I’m not painting the whole picture. You see, yesterday’s post was written on Saturday, and when I wrote it on Saturday, I didn’t know that Sunday was coming.
I almost hate to use the phrase, but the only way to put it would be that Sunday was a “bad day.” At least I hope it was, because if wasn’t then that means that the worst from Wednesday’s treatment is not behind me.
The story of Sunday is still a story of the mouth sores. SO TERRIBLE! When they woke me up in early in the morning we knew that it was going to be a serious problem. Christine called the 24 nurse hot-line to see if there if there was anything that they suggested. Oddly enough there wasn’t much available in their database of knowledge. Whoever Christine spoke to even admitted that she was surprised that there wasn’t much info available, other than it’s an expected side-effect and isn’t something that should be of great concern. I get the feeling that while mouth sores are a common side-effect of chemo, the debilitating intensity with which I was experiencing them might just be my own trademark experience.
The nurse on the phone was able to offer us some help, and after a quick trip to the 24 hour Pharmacy at the hospital, Christine came home with a prescription mouth rinse. It was described to her as Maylox-Benadryl-Lidocane mixture. Shake-well, add some water, swish it up and you should be good to go within 20 minutes. The taste wasn’t too bad, and it did do the job for a while. The key ingredient is the lidocane, which is the same numbing agent that dentists use orally to numb the injection site before administering novocaine. So yeah, it tastes like that.
It worked for a while throughout the day, but by mid-day even with the rinse I couldn’t eat or drink anything. Even water made my mouth burn so much that I couldn’t drink it anymore.
My family was over for the day on Sunday which was great! But I was generally unavailable to them as I was on the couch just trying to ignore the discomfort I was in. Later in the evening Christine and I went for a walk around the block to get out of the house and I broke down a bit. I was weak from the treatment and weak from not really being able to eat and it was just one of those little moments that I had “prophesied” about earlier in the week. I was living a vision of what the next 8 months of my life are possibly going to be like and I cried as we walked around the block together.
By mid-day on Monday I could eat and drink again but it still hurt, but as my mouth slowly got better I began to get a sore throat that even now (on Monday night) it still causing a good deal of discomfort, but at least I can eat now. My mouth still hurts, but not as much in the burning sores kind of way. It’s still there, but now there is also a dull aching in my teeth and gums. Not really sure what to make of that yet, but now I feel that the worst is over (until next week when I go back to chemo, at least).
Hi Brian, I’m so sorry that you developed such bad mucositis! But if the chemo is doing this to your “healthy” tissues, it must be liquifying those cancer cells.
I’ve never had these sores by I have had patients with them. If your onco agrees, you might try cold (popsicles or chipped ice) to numb it a little as well as get some fluid. Honey is being studied as a promoter of wound healing, and should soothe as well as help heal up faster. For the sore throat/esophageal burning the honey may even help because you get to swallow it. And also for the throat consider sipping warm jello or gargling with tea.
And your doctor can prescribe pain medication that is either in liquid form or a patch if this is really bad and you can’t swallow.
I sure hope you find something to make this less of an ordeal. Wishing you the best!
Cindy – good to know that I shouldn’t dilute it down (although, I’m sure the fruit in the smoothie isn’t bad, either =). We have raw local organic honey from the farmer’s market in our cabinet at home, and Brian is a big fan. I think it comes from Camano Island bees. He used to eat a little honey on toast each morning before he was diagnosed. Sounds like it’s time for him to just eat a spoonfull, and see if that helps!
Cindy is right about the honey. Of course he can swallow it, but it should sit in contact with the sores for a while. So Brian should just hold a spoonful of it in his mouth for as long as he can (without gagging!) and then swallow it.
Sorry to hear about the mouth sores. If your Dr. Ok’s it you could try Kanka. You can find it at any drug store. I use it all the time. Hope this helps.
Karen – Thanks for your post! I had heard that about honey, and last night I made him a peach and honey smoothie for just that reason. He drank most of it, and I hope the honey does its thing! It’s good to hear there might be some science behind it, and it’s not just an urban myth.
It’s also good to hear you say that chipped ice might help. In my infinite google searches on the subject, I have heard rumor that ice chips or popsicles during the chemo infusion itself might help in the days after. I plan to ask the oncology nurse about it when we go in again next week.
Stine – I think the theory behind ice during the infusion has to do with it decreasing the blood flow (with the accompanying poisons) to the tissues. I’ve heard of people trying ice caps to prevent hair loss! Not sure if it is very effective since you can’t really keep the areas “frozen” long enough. Honey is good stuff. When I was a resident, the head of gyn onc had us packing wounds with a betadine/honey mixture. Try some straight honey directly on the mucous membranes. Also, I sent you a PM on FB :-).
Hugs to you both!
Hey Brian,
My mom had cancer five years ago and did a lot of herbal supplements to combat the mouth sores from chemo – here’s the smoothie recipe she used (ingredients can be found at The Herbalist – http://www.theherbalist.com):
The Herbalist Super Rejuvenation Smoothie
1 C organic fruit juice (i.e. apple or pear)
½ frozen sliced banana
½ C organic berries (i.e. strawberries & blueberries)
2 T Green supplement powder (Blender Culture or E3Live)
1-2 T Maca powder
1-2 T Flax oil
4 – 6 droppersful The Herbalist Renew-U Tonic
4 – 6 droppersful The Herbalist Rasayana Rejuvenating Tonic
Blend, adding water as needed to achieve the right consistency.
Dunno if you’re into natural stuff, but she never got a mouth sore as long as she was taking the supplements. 🙂
Honey works really well,and it works best without being diluted into a drink, but pure by the spoon or tablespoon full. It should be local honey. They’re using it with burn victims and applying it topically to burns, it has amazing healing properties.
Also, aloe vera gel (must be the real gel that can be taken internally, not the liquid or a lotion) has great healing properties and helps with digestion, ulcers, etc.
The recipe above sounds great and will help the immune system 🙂
Drink distilled water. That is what Jean would drink it worked for her.
If you can get a hold of Manuka Honey (which is from bees that feed on tea tree bush flowers), try that. It supposedly has even greater healer powers and it helped heal my infamous leg sore, which was quite a feat.
I’m pretty sure corn dogs have honey in them too and you can’t go wrong with corn dogs.