Gail,
My husband found that peppermint tabs - even just smelling them when he felt nausea from the Ethyol and chemo - helped. Also found pressure points to the wrists to help.

Anita

Has anyone tried those wrist-bands they sell for seasicknesses? (Of course not as primary anti-nausea treatment but as a back-up). I have always been a bit skeptical of them but I do know acupuncture works so who knows...?

Gail

Gail,

I've used one for mild sea-sickness on a cruise (haven't tried them for other types of nausea, since I rarely get those). It did seem to help in that case -- several other people in my family also had good results with them.

It may be worth a try -- you have to get it positioned in just the right spot on the wrist, but once you figure out where that is, it's pretty easy. If it helps, you've got a "solution" that doesn't involve one more drug in your system.

Cathy

Gail, my husband got them but didn't think they worked for him. Acupuncture did the trick though. He used it all through radiation and had very little trouble with nausea and not that much with mucositis for that matter. He still uses it now for pain relief, xerostomia, and a few other issues. His acupuncture doctor is on staff at our cancer center's integrative medicine unit. Unfortunately, its not covered by insurance and he pays $80 per appointment (once a week). I think it can be even higher. I remember he stopped going the last week of his radiation treatment for a week and started getting nauseas and then resumed the following week and the nausea went away. He didn't have chemo, so I don't know how acupuncture would have done for the combined treatment. Jerry never had to take any medications during treatment except a pain medicine. He attributes it to the acupuncture, but who knows, maybe he was just lucky.

Hi all --

Just an update -- Barry finished his first week treatment today, 5 1/2 to go and they will be the hard ones! So far so good -- we did get some help on that heartburn and burpy feeling which was making him feel slightly nauseous -- spoke to RO and nurse and they prescribed Reglan (metoclopramide) which stopped it. Took it 15-30 minutes before eating and it did the trick; this and Zofran before the Ethyol and he only felt a little queasy so nibbled some crackers on the way home. So far he's eating fine and maintaining weight but we know this won't last. The hardest thing is for him to continue drinking after swigging down 24 oz. water in 90 minutes for the Ethyol injections but you need to do it to get it out of your system (plus for the other benefits of being hydrated.) We've found Edy's fruit ice bars to be a good "liquid" -- also Jello.

Tomorrow his daughter is driving him up for chemo and rads as I have to take my older dog in for surgery -- it will be good for her to meet his team and also, see first hand what he is facing in his treatment. I only hope they don't get lost in Baltimore! (I lived there for 5 years so know it well).

Gail

Hi, just a little update -- now finished day 7 treatment and so far so good -- the Reglan seems to have pretty much solved the nausea problem as it stops Barry getting that "bloated" feeling which, exacerbated by the peg, was causing a lingering queasiness. Today no problem. I am still amazed as to how well he's doing with the chemo-- that was yesterday, so he didn't get amiphostine, just the carboplatin -- came home all bouncy (his daughter took him in) and ate a huge supper. Our neighbor had baked him a fresh peach pie and he really enjoyed that -- he is trying to eat all the stuff he likes now as he knows he will be losing his taste fairly soon and won't be enjoying food, even if he is able to continue eaing some by mouth.

We have spoken to various others getting radiation at Hopkins for HNC and it seems the intensity and duration of the mouth problems vary a lot -- many people don't do anything until problems develop whereas Barry's been doing stuff all along (aloe in mouth, l-glutamine and salt/soda rinses, as well as our little Manuka honey "experiment"). However neither of us is naive so we are just waiting for that shoe to drop and enjoying the "calm before the storm" so to speak...

Barry's kids bought him a portable DVD player (a belated birthday present) to use while he waits for chemo, which can be quite a while -- also his daughter brought over the humidifier we bought her for Xmas as she says he needs it more...

Would be interested in others' experiences as to when they atrted to get mouth sores, thick mucous/phlegm and loss of taste...

Cheers,
Gail

Gail,

I managed to coast through the first 2 weeks or so with very little noticeable impact, other than the fact that during that period I started to detect that my taste buds were deteriorating a bit. In general, I felt so good and upbeat at that stage that I thought all the advance warnings about radiation had been over-blown. (I was 39 and otherwise in good health at the time.)

There was a good team of oncology nurses at my radiation center who monitored me closely and kept track of my nutrition and medication, but even with that, I was surprised at how quickly some of the nasty side effects kicked in around the third week or so. From then on, until a good many weeks after the end of treatment, it was an ongoing battle against mouth sores, occasional infections, evil phlegm and swallowing problems. The good news is that over the years, many of the specifics have become a rather dim, distant memory for me.

Good luck to you and Barry as you keep going -- it sounds like you have a good routine set up to get through these next few weeks.

Cathy

Oh, Gail. Well, we were coasting along well into the second week of treatment. My dad was eating pizza with us on a Saturday and by Monday his mouth was sloughing off. I don't say this to scare you, I just wish we had many stories that could have prepared us. With this mouth sloughing came 102.1 fever spikes, a week long hospitalization and a delay in treatment. Having said all of that icky stuff, I am elated to report that the week break and antibiotics brought my dad a whole new mouth!! He is 100% and is finishing his 4th week tomorrow. His spit is almost normal too...
So, in preparation for the worst-I PRAY you don't go through what we did--
Get a suction device for the icky thick junk from a Medical Device company; stock up on viscous Lidocaine and magic mouthwash (have them add Karafate); get your pain drugs (Fentanyl patch for long acting relief and liquid Oxycode for short-for example) ahead of time. Take great caution when he starts taking them if he has no tolerance to narcotics-like my dad didn't.
What happenens is that the sores brew from the inside out then, BLAMMO...
It was a blessing for my dad that he got the break because then he experienced how fast the mouth can heal. It gave him new strength. By the way, I don't think he would have been in the hospital for so long, but that is also when he got his PEG inserted. I am so excited to see how your Honey trick works. I have read many things about that. Unfortunately, we tried the aloe swish too late and it burns my dad's mouth.
It is so funny, when we go in for the chemo (overnight) we bring in our DVD player with funny movies--it is a good thing!
We know we will have another bad wave before this is over--but, HIS TUMOR IS NOT EVEN DETECTABLE!!!!! Went from huge lump to----GONE in 4 weeks! Hooray chemo/rad.
Oh-his neck is starting to have that radiated look too--
Good luck, I will be looking for yor posts!
Shawna

Hi Shawna --

Glad your Dad is doing better and that the tumor is going away! Wonderful! Chemoradiation really does work -- someone we know in Australia two weeks ahead of Barry had same experience, they had to make a new mask as his tumor went down so fast.

I had heard how quickly the sores can hit -- will be sure to ask Rad nurse tomorrow for oxycontin and/or Duragesic script as we have a weekend coming up -- know someone else who got caught at the weekend and WOW! Pain city!

Barry does have his peg already in so at least we are prepared in that fashion...

Thanks everyone for the suggestions and inut -- we are forging ahead!

Gail and Barry

Hmmmm...I will have to inquire about the new mask, it makes sense. Good about the PEG, good about everything. Hang in there and have a nice weekend! Will send some prayers. Go HONEY and Aloe!