I didn't have a great week after 2nd chemo last Thursday. Was sick all weekend, finally Wed they cancelled my rads and hydrated me and gave me iv anti nausea meds and now I have a home care nurse coming by every day as needed to hydrate me. I'm feeling better now, not nauseous (or just barely), can keep the tube food and water down, and I can even get a couple hundred calories from real food - pudding, smooth yogurt. So I can drink some liquids, and I can rinse with the mouthwash, but when I try to brush my teeth and swish around that water I have a huge gag reflex. I haven't thrown up from it, yet anyway, but it's close. It's not just toothpaste, just trying to rinse after a yogurt or pudding is the same. Is this typical? More importantly - is it going to end? Today will be the 25th rad, so 5 more to go after today. And 1 more chemo. Unless it's cancelled.

Off the top of my head, I cant remember many members bringing up the gag reflex as one of their bothersome side effects. Of course, that doesnt mean there arent tons of people here that have experienced it. I did a quick forum search using "gag reflex" and came up with 200+ posts mentioning it. After checking a few posts, not many have been talking about what you are. You still may want to try the search yourself and go thru the posts. Im pretty sure if you read thru a few them you will find others who had similar situations and find what helped them.

If you are starting to have trouble with the chemo, make sure your medical oncologist is aware of every single issue you are having. Cisplatin hit me hard too. My medical oncologist cut the second dose in half and eliminated the third dose completely due to my severe reactions to it. Take your anti-nausea meds around the clock weather you are having issues or not. Make sure you have plenty on hand to carry you thru several weeks past when your treatments end. Ask your doc to write the prescription with several refills too. I still have stomach issues and rely on zofran around the clock for a couple days when my stomach acts up.

Do you have a waterpik? If not, I suggest picking one up. Use it when brushing teeth (should be at least 2x a day). The waterpik (use it on its lowest setting) will get in between teeth better than even dental floss can and your mouth will feel nice a clean with avoiding gargling mouthwash so you shouldnt have any gag reflex problem. . Use warm water with a couple teaspoons of non-alcohol mouthwash mixed in. I had prescription mouthrinse, peridex that I would add to the warm water. A waterpik will replace the swishing of mouthwash and help keep your mouth as clean as possible. Anyone who has had oral cancer and gone thru rads will need to take extra good care of their teeth and mouth forever so a waterpik is a much needed device.

With only 5 more rads to go you are starting to hit the worst part where it gets very difficult. Many will have some pretty dark days at the end of rads/beginning of their recovery. When I was getting towards the end, I was so sick I tried to quit my treatments. My son and nurse refused to listen to anything I had to say about quitting. If I had quit back then I doubt Id still be here. So please remember no matter how difficult this gets, it MUST be done. Since you are nearing the end, make certain you have everything you could possibly need (prescriptions with refills, prescription to get extra hydration, etc) from your medical and radiation oncologists. After completing rads, almost all patients experience a bit of a sense of loss. Their past 5/6 weeks routine is suddenly over and patients can feel a bit isolated.

Im very sorry to tell you but the first few weeks of recovery will be the hardest part of the entire treatment regime. About the only thing that can be done to help alleviate your pain, discomfort, fatigue, nausea, etc is to push yourself every single day to take in at least 2500 calories and 48-64 oz of water. Of course taking your pain and nausea meds around the clock to try minimizing side effects along with hitting your daily intake minimums is what will help to make this as easy as possible. Make daily goals and meet them every single day. By skimping one day and thinking... "its ok its only one day" and it can be made up the next day turns into a viscous downward cycle. Thats the trap I fell into and I suffered greatly with hospitalizations for dehydration and malnutrition. Im very glad you have a home care nurse checking in on you. Talk to your doc about it and ask to keep that service until you hit at least 3 weeks post rads so your visiting nurse can help get you thru the worst part of rads.

From what you have described to me it sounds like you are actually doing pretty good. Most patients will hit the struggling part around week 3 and you made it to week 5. Im sure you do NOT feel even close to your normal self going thru this. Rads can be horrendous when having chemo along with it. Chemo makes the entire process so much harder... BUT!!!... (always a but!) chemo is helping the rads to work better so its a necessary evil.

Hang in there and do the very best you can with your intake, meds, etc every day. Check in often and we will try to encourage you and help pass along any helpful tips we have.

Best wishes!!!

Thank you Christine, I did a search and then read through a whole bunch of other posts. No ideas really on what I can do (well maybe 1, try those little foam sticks to get stuff out of my mouth), but a bit of hope that it will end eventually.

I've done more lurking on this site than posting, I find it a scary place to be most days and I also don't want to write anything when I'm having a dark day. But I do feel that at least this part will be over soon.

Embishop,

I felt the same way you do. So I want to encourage you! You can do this! Yes. It’s hard. And it will take a while until you start to feel better. But here is the good part.....

You will feel better!!!

I still struggle with good days and dark days, almost 8 weeks post rads and chemo. But the good days, minutes and hours greatly outnumber the dark ones.

Some of the posts on this website used to totally freak me out when I first was diagnosed. But as you finish this time in your story, you will be encouraged by some of the posters on this site and over time you will become the one encouraging those that will be going through what you are going through now.

This is a chapter in your story....albeit a pretty crappy chapter. But the future holds brighter chapters.

Hugs and warm thoughts coming your way!

Linda

Embishop,
I also experience the gag reflex. I'm not sure if yours is the same, but mine has to be a do with fluids only past a certain point towards the back of my mouth.
I am 6 weeks post rads, and it is much better now.
It was so bad that it was giving me an excuse to put off things that I needed to do, like the baking soda rinse and fluoride trays or just plain brushing my teeth.
But what I found to best overcome it, is to start any rinse, just in the front of my mouth, then keep repeating until I can go back far back enough to gargle.
I found this especially true with the baking soda /salt rinse.
As I worked my way back, with repeated rinses, it would take away the older mucus, which I assume was causing the gaging.
With brushing, I try to keep any toothpaste foam towards the front of my mouth, to spit out with littie effort. If I try to get every little bit out, even at the very back, it seems to cause the gag cycle. So it's a balance, I can live with a little toothpaste aftertaste, if it prevents the gagging.
I have always had this, even before the oral cancer, so I don't think that I will ever be totally over it, but it's way better, and manageable now.
My wife's coworker, who is a breast cancer survivor, gave me a very inspirational medal. It's a small Angel, that is imprinted with, "This too shall pass".
It's so true. It keeps me from dwelling on the current side effect, knowing things come and go. You will get through this, as unpleasant as it is. But we are all stronger then we realize, after the moment passes, and we are in sunny times.
Take care, be tough!

Thanks Linda and CM57. A bit of an improvement some of the time, it just sucks when it turns into all out vomiting. My RO extended my home iv hydration for at least another week. And best of all - today was the last day of rads!! I finished all 30 of them!! I still have a chemo booked for next week but I'm thinking it might get cancelled. But either way the end is in sight! (For active treatment anyway.) and plus I decided it's been a crummy year so far, starting with dentist finding a lesion in my mouth on a routine dentist appt Jan 3rd, so I treated myself and bought a new guitar to celebrate the end of rads 😃
https://imgur.com/a/8o6mFpU

Woo hoo! Beautiful guitar.
And congrats on the last rads treatment, that is a wonderful thing.

Congrats on the last rads!!! Such a great milestone!
Hang in there for the next few weeks. It’s gonna get much better!

Linda

Oh, that IS a nice guitar! Enjoy! Always good to have something fun to look forward to on the good days... glad your rads are over!