Three Weeks Behind Us

RAKGA

Hi everyone,

My husband and I just returned home from his radiation #15 out of 35 so almost halfway there. It's been a bit of a roller coaster, but overall, tolerable so far. As a reminder, he has cancer at the base of his tongue, p16+, T1N2bM0, and began a protocol of 7 weeks with cisplatin chemo each Monday and radiation Monday - Friday.

Week one was okay, the main struggle was just depression and trying to absorb that everyones thoughts and prayers are actually with YOU and not you praying for someone else.

Week two was dealing with quite a bit of nausea (thankfully no vomiting) and constipation. Olanzapine makes him extremely jittery and he cannot keep still so he has not been able to use that as an ongoing medication. Zofran helped some. Since compazine is closely related to the olanzapine, the doctor recommended staying with zofran.

Week three and the nausea has subsided thankfully. But, at the end of this week, the extremely thick saliva and taste bud issues have come on strong. Last night was the first time he used his feeding tube for Boost HVC as well as some water. Even though he was able to eat some eggs this morning, I forsee using the PEG tube more and more.

My main concern today is trying to figure out how to ensure he's getting enough fluids now that he is mainly PEG dependent. The Boost makes him feel very full and the last thing I want is for him to get nauseous or dread the tube. Any tips or tricks? Advice?

So far, his throat has been okay with just a passing soreness here or there. We've been keeping up with the neck lotion that the radiation office recommended and that seems to be helping his skin.

I am SO thankful to be almost halfway through the treatment itself but my anxiety has been creeping back up the past couple of days. It is so hard to see him lost in feeling bad and concern about his own recovery. We have a wonderful group of friends and family supporting us but your experiences are the most helpful to me.

wbcgaruss

RAKGA, it sounds like you folks are doing pretty well, and he is handling the treatment well except for the normal glitches he has had with nausea and constipation. These are all things normal with the treatment and meds you take with it etc. I also had a Run of diarrhea at one point in treatment (Pun Intended). There are many odds and ends that happen with this treatment, the best thing to do is stay on top of them and if it is something unusual or something you can't take care of with Over the Counter meds contact your care team right away.

I am glad you have the PEG, it makes things easier, and if he can eat, great, if not you have the PEG.

Getting enough fluids? Just use the feeding tube for water, soda, or whatever liquid you want to keep him hydrated. You may have to try different times and amounts to avoid bloating but get enough in. You may have to tolerate bloating for a period, I was extremely puffed up for a time and had to get larger pants, and they weren't regular I just used the stretch pants during treatment.

One other thing, for the thick saliva you will want to have him rinse with a baking soda and salt recipe as often as he needs it. Thick saliva will get worse and it is important to keep it cleared out by spitting and using the rinse. People have also used a suction machine you can get but I think that is for severe cases. I will post the recipes for the rinse below. At first he may need it once in a while and then more often as needed. At the worst, I was rinsing every 20 minutes or sooner, he will know. It keeps the thick saliva cleared and refreshes the mouth.

Take care, God Bless

Russ

RAKGA Here Are Recipes

For the salt/baking soda mixes.

Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

The trick is to stay ahead of it as best you can.

There are no easy solutions but this will eventually quit.

You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

Laying down directs it to the back of your mouth/throat area.

Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

Wishing You The Best-Take Care-God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days, before returning to this mixture.

MarineE5

Hello RAKGA,

I am glad to read that your husband is almost at the half way mark of treatments. Russ has touched on a lot of good information for you. I used the Baking Soda and Salt solution as often as every 20 minutes in the later weeks. It took the edge off of the mouth and throat discomfort. I was also given a nerve pain medicine called Nuerontin/ Gabapentin. It helped in the later weeks and after treatments. We get the full blast after treatments end and recovery starts.

My Nutrition was Nutren 1.5 and was told to take in 8 (8 oz.) cans per day. Like your husband, I felt bloated and generally only got 6 cans in per day along with as much water as possible.

With the constipation issue, I was told to you a liquid form of Colace Stool Softener which I put thru my Peg Tube every other day and it worked good. Your Husband may have to adjust how often to use it, but my routine was good for me.

One thing that I did, was after each day of treatment, I came home and split some wood by hand. It might have been only 10-15 minutes before I got tired, but in my mind, it was that little bit of exercise that caused me to be tired, not the cancer treatments. Now I had a good reason for a nap. Stay Positive

My Best to Both of You and Everyone Here

just4jme

https://csn.cancer.org/discussion/327787/three-weeks-behind-us

My husband just finished treatment last week. Unfortunately, I am so exhausted. It would be difficult to tell you everything we did to help him get through this.

However, we both 100% believe these three things helped him immensely.

https://a.co/d/eaEv2WJ

https://a.co/d/jkpFpYu

https://a.co/d/frubMrX

I’ll go more in depth in a separate thread tomorrow.

Wishing you the best. ❤️

,

wbcgaruss

Hello, just4jme, I am so glad your husband has finished treatment. Believe me, I know just how you feel, this treatment is brutal on the patient and drawing and exhausting at times for the spouse or caretaker. Now it is time to rest and get your stamina back. Thanks for letting us know about the products that were such a help to you, I am sure it will be a benefit to others in the future. Your husband looks remarkably well post-treatment and it looks like he is ready for a nap. I think you will find he sleeps a lot for a while and is a common happening for this treatment but this too shall pass eventually as he gets farther into recovery.

Also, I recommend you check out the "Superthread" at the top of the Head and Neck page, it is loaded with info and links that you may find helpful.

https://csn.cancer.org/discussion/261072/superthread-read-only-contributed-by-sweetblood22#latest

NEGU (Never Ever Give Up)

Wishing You the Best

Take care, God Bless

Russ

goffrey

https://csn.cancer.org/discussion/327787/three-weeks-behind-us

I used Gatorade through the tube to keep hydrated. With the diarrhea you can buy banana flakes on Amazon and they go through the tube and will get rid of diarrhea almost immediately.

erikaph

My hubby would use filtered water with the PEG tube after the nutritional feedings (Nutren 1.5). He too could usually only do about 6 of them a day and some days it would be less. It took a while for him to figure out how much water to use to prevent the bloating sensations. My guess is everyone is different. And you may think this is crazy, but he used the rinses as Russ suggests, and then after his last week of treatment he rinsed with some lime sparkling water as well. The carbonation seemed to help break up the sticky stuff and he could taste it a bit...lol. Now that probably won't work for someone that has a very sore throat or mouth, but it seemed to work for him. 3 weeks after his last treatment (YAY!) he is still using both the recommended rinses and the sparkling water and now able to drink it as well.

Progress is one breath, one day at a time! Hang in there!

erika

wbcgaruss

I am so glad things are progressing well for your husband, also makes your life easier.

So correct, one breath, one day at a time.

Take Care, God Bless

Russ