We're down to 7 treatments...and, now the mucous is really becoming a problem. So, thick can't be swallowed. Is impacting calorie and fluid intake which is a big deal as Dan doesn't have a Peg. Everything he tries to swallow wants to come back up with the mucous.

His doc gave him Caphsol to try 10 times a day...but I was reading here that baking soda and salt water have worked well (perhaps even better) for others. The Caphsol doesn't seem to be doing the trick...although, I don't know that Dan has ever gotten quite to 10 per day yet...that dang fatigue keeps getting in the way.

My question is what is the formula for the baking soda/salt rinses...are these separate formulas...salt water and baking soda water...or are they combined? How much salt and/or baking soda should I use?

Has anyone had success with anything else. Dan can not tolerate Rincinol or the Magic Mouthwash.

Thanks much!

Margaret,

Although we didn't use exact measures, I kind of put a tsp of both into a 16or 20oz water bottle filled with warm tap water. I made this mix every morning and just left it on the kitchen counter. I didn't have a problem with mouth sores at all but did have significant thick mucous. The key, I think, though is the frequency I rinsed/gargled with salt/bak sda mix at least 5 or 6 times a day. After I vomitted up mucous, after I drank my liquid meals, after bad coughing spells in the middle of the night etc...

It seemed to help me out.

Take Care,
Tim

Margaret,
no skills required here.
Just dissolve the salt and soda in the water and you are ready.
The composition is variable and depending on taste (salty) you can reduce the amount of salt. Strangely enough this concotion has never "burned" me even during the times when water was.

(I just put the stuff (1 level Tablespoon each) in an empty soda bottle, put some water in shake and then fill). To be honest I do not measure the amounts accurately.
One thing get the unscented soda! Not the one they want you to use for the kitty litter


M

Margaret, do you all have a suction machine? They can really help. Amy in the Ozarks

OK, thanks for the help...now, if someone could talk him into trying it...that would be nice. I have read him the posts about how it has helped other people, but to no avail.

Amy, I do not know what a suction machine is.

Hi, Margaret, the suction machine is a small, portable unit that will sit on a bedside table It works pretty much like what a dentist uses to suction saliva, etc. from your mouth while you are in the chair. It has a variable speed motor with a tube attatched to suction mucous and excess saliva from your mouth into a recepticle. If you ask Dan's Doc to write a script for one, the Ins. Company should pay for the rental[they can be rented by the month] and some people use them for a long enough period to buy one. They can be ordered through most Home Health Care companies. It was a great relief for John and others here have found relief using one. Amy in the Ozarks

Margaret,
I would think that if you are miserable you would automatically try almost anything to make it better....
How about this: just prepare a bottle of the salt/soda mixture and let him try when and if he is ready. It is certainly a lot more comfortable than rinsing with water. I use this to rinse my mouth after brushing teeth too. When you make it, taste it and see that is does not taste too salty for you.

Also, watch out for infections, especially post radiation when you see the RO less often. These can make you feel miserable too and cause difficulties in swallowing, speaking etc... I had BOTH the RO and MO look at my mouth and both figured that this is as it should be at this stage... Well, I also had a slight fever. I took diflucan and within 3 days the fever etc was gone and I can even swallow normally. I still have mucositis of course.
A note of caution, you should not take prescription drugs without the consent of an MD. I wonder why neither RO nor MO came up with any of this? Maybe one also needs a GP with some common sense!

M

He did finally try the mixture...he can't tolerate the salt but can tolerate the baking soda. His reluctance is that there have been so many things he has put in his mouth that have hurt, burned, felt awful...he was hesitant to try one new thing.

He really dipped when he got thrush and has never fully recovered as the mucositus continued to get worse while the thrush was getting better.

According to his RO on Friday, his mouth is on target to where it should be at this stage of treatment...and, he's been feverish throughout ( a side effect of the chemo). I can not wait for this to be over!

We are only getting RXs from his RO and MO team...no time to visit anymore docs...but, I do appreciate the warning.

His RO really thought the capsol should do the trick on the thick stringy mucous, but it just doesn't seem to be doing anything. Now, I have the baking soda mix in a squirt bottle by the bed and he is using it regularly and just spitting it out in a cup. It's too early to tell if it's working, but he's trying.

Since he's gotten that thick mucous, he has had trouble taking in any of the protein shakes...he's really dipping in calories...but, this has only been a problem since Friday. He has chemo and consultations tomorrow, so hopefully we will be able to figure out how to keep him hydrated and full of calories. Amy, I will ask about the suction machine then too.

On a good note, his energy level was up today, his pain is under control and other than not eating or drinking nearly enough he is doing surprisingly well today.

Marcus, how are you feeling now that the fever is gone? You still have mucositis...do you also have the thick mucous? Or, did that go away yet? I hope you are doing well!

As always, thanks for all the help!

Margaret,
excellent hat the "soda" water works!
With the fever gone and the sores healing, I actually feel pretty good. I still get tired quickly and I get exhausted easily for even minor physical activity. I have just started to drink and eat (soups at this point) normally. The tolerated food selection is quite limited unfortunately. In the meantime I am using the PEG to avoid loosing any more weight.
The mucous is still bad in the mornings and during the night. Now that everything hurts less, coughing and hacking it up is possible even though it may not sound very civilized.

Best
Markus

Hello,
The mix we were told to do for my husband was
1/8 tsp of salt and 1/4 tsp of baking soda in one glass of warm water every 1-2 hours. It helped when he swooshed this around prior to eating (drinking I should say by the last week). Good luck to you and your husband. Tammy (Kyle 51s wife)

Margaret, one of John's biggest challanges throuout his journey was the constant thick, stringy mucous. I promise the suction machine will help! Insist that someone get you a preescription for one. We even installed an adapter in our car so that we could take it on the road. Amy in the Ozarks

Hi Amy,

Right now, they are thinking that the thick, stringy stuff isn't going to last long beyond radiation. He's got 6 treatments left (not that I'm counting or anything :rolleyes: )

How long post RT did John struggle with this problem?

Yesterday, Dan started to have really icky, smelly brown stuff come out of his nose. They said it was dead tissues and cells and stuff. It scared the heck out of him.

And, he's been off the thrush medication for 1 day and now it's back again! This is a road so full of ups and downs. Sunday he was doing good...yesterday, not so good.

Marcus

I'm glad your feeling better. I understand it takes awhile for all for all of the energy to return. And, it's good that you are starting to eat foods--even if they are limited. I hope you will keep posting about your progress.

Thanks again for the help,

Margaet, concerning the muscous, we are 11 wks past rads and I can say my hubby is still spitting but maybe 10% of what is was. His seemed to last longer than most. The thick stuff subsided maybe 6wks post treatment. It was the most annoying part for him. I truly understand about your hubby not wanting to try anything in his mouth, mine felt the same. Concerning hydration he would have it by IV 2-3 times a week at the MO office. Ask them for fluids it really helps a lot. Have you tried a warm mist humidifer? that is what worked for us or should I say helped a bit. Nothing we tried really cut the ugly stuff. Time is the only thing. Hang in there. There is an end to this.

Hi LJ,

Yikes...11 weeks. But, glad to hear it is a lot less than what is was awhile back. We have a cool mist humidifier...is the warm one better?

I just spoke to the MO office today as he hasn't taken in more than 8 ounces today...he got hydration yesterday but am going to try to get more this week.

How is your husband doing with calories and fluid intake now?

Margaret, I just took some stuf down to the basement and lo and behold, there was the suction machine! [I thought I had given it to the Nursing Home when I took the 2Cal HN to them. I would be happy to UPS the machine to you to see if it would give Dan some relief. You can send it back whenever. I wouldn't count on the mucous going away till well after rad is over. E-mail your address if you want to try this machine. Amy in the Ozarks

I just sent you an e-mail, Amy. Thank you!

Hi Margaret,
We didn't seem to find the right balance for the baking soda and salt water. I asked my mom's nurse prac for a rx of sodium chloride, she happily gave it to us. This works so much better for her.
I read your posts and it seems my mom is following the same symptoms course and around the same time following treatments. She only has 9 more rad outpatient txs and 2 more Erbitux txs; then she will get some time off for good behaviour! >>>just trying to inject a little humor. I was told today that she'll get close to a month off, then more scans, not sure which will be ordered, then the brachetherapy.
She is starting to burn, she says she looks like she has a "5 o'clock shadow" on her face. I told her she still looks beautiful and it will all go away with healing.
I almost forgot, they gave my mom a rx for tussionex today, has Dan been on this? Did it help at all?
Hope you are both doing well. Hope everyone here is feeling good!

My mouth sores were so severe that ANY amount of salt or even acidity from fruit (even cantelope or even smoothies)would send me through the roof. I just had to make sure that I hacked it loose in the morning when I woke up prior to eating anything. I just used lukewarm water. Morphine was was my friend also.

As Amy mentioned many have had very good success with the suction machines.

Dan is a lot like you, Gary. Salt drove him nuts. He is able to tolerate a little warm water and baking soda, but when I tried the salt he went through the roof in pain.

We are giving the suction machine a go. (Many, many thanks to Amy).

He is also using Caphsol.

Donna, what is tussionex? Sounds like your mom is diong well. How is she managing with the Erbitux?

Hi Margaret -
I've been off the board for some time, but finally back. Like most neck radiation patients, Kenny (my husband) had a terrible time with the thick, suffocating, mucous. The backing soda/salt warm water gargle solution did give him some relief. The recipe we got from our RO was 1 tablespoon baking soda + 1 teaspoon salt to 12 ozs warm water. He gargled (as best he could) for weeks with it. It really soothed his mouth and helped to keep the thick stuff off his teeth (he kept all of his). On top of that his RO prescibed a "Swish & Swallow" concoction that really helped to 'numb' his mouth when the thrush & sores hit.

Unfortunately, Kenny had really bad mucous for about 2 1/2 months after radiation treatments. Remember - radiation is accumulating and will continue to 'work' for weeks after the actual treatments end.

There is light at the end of the tunnel. In September we are celebrating Kenny's 2 year cancer free anniversary. He is doing terrific and managing to get on with his life.

Hang in there!

Your caregiver in arms! Carol

Baking soda and salt.such a simple solution but so very effective.Rob swore by it.

Margaret
Here is the recipe for your own home grown saliva minus the enzymes of course.
In a one ltre container:
Fill 3/4 with water
Add 1/2 tsp. of salt
Add 1 Tsp. Of soda
Add drops of lemon juice to taste. ( lemon juice will stimulate he salivery glands to produce more saliva)
Shake well with a lot of love and there you have it.

Cheers,
Mike

Carol,

I missed your post, how nice of you to respond. I'm glad Kenny is 2 years out. Do you remember when your life returned to "normal"? Such a long journey this is.

Carol, Cookey, Mike,

My husband can not tolerate salt (or citrus...he'd cringe if I gave him even a drop of lemon juice diluted). I've given him baking soda and water...doesn't seem to help. Guaffisen (sp?) syrup is doing the most good right now.

Here's a weird thing...I gave him ginger ale the other day. And, it did something strange to the inside of his mouth....he was spitting out white pieces that kind of looked like lining of his mouth. Has anyone experienced anything like that?

Seems to only occur with the ginger ale...so we stopped that. But I had thought I had read ginger ale or club soda could help cut the mucous.

Margeret thats exactly what it is .Dead skin sloughing off and hopefully leaving pink healthy tissue underneath.Robin could lose the entire roof of his mouth with one wipe of a sponge he always felt better after it came away.

Thanks, Cookey. So, it's a good thing. Hmmm, funny that it only happens with the ginger ale. I'll let Dan know. :-)

Margaret,
The carbonation of the gingerale is likely getting underneath the dead skin cells and pushing them free. Unless this results in pain just consider it a normal part of the healing acclerated by carbonation.

As for my previous post,
You can eliminate the lemon juice and eliminate or significantly reduce the salt content until he can tolerate it. Everything is trial and error and different for every patient.

Just keep trying different things and know we are here for you and praying for you.

Good Luck
Mike

I think it's supposed to be diet gingerale-at least that's what the chemo nurses were telling mom and I.
Did anyones tongue change after the sloughing? mom had the pink tongue now it's white creamy coated.
this is all scaring the hell out of me.
thanks

White and creamy coated usually means thrush Donna i would get it checked out.

Hi Mike and Liz and Donna,

I read your posts about the ginger ale and carbonation to Dan, so now he's back to drinking it again. :-) BTW, I like the words "healing accelerated"...haven't heard those 2 words together lately.

Donna,

Can you call a triage number for your MO or RO? If it is thrush, the sooner you get an RX the better. Dan's on his 4th bout of thrush. Arrgghhh!!! It always sets him back on fluids and calories. And, this time we caught it within hours of developing and we're still having trouble getting it to go away...he's been on an Rx since Friday.

How's your mom doing outside of the creamy coated tongue? Is she able to eat or drink? Is her weight maintaining?

We're just going into the 4th week of recovery. Every day is a struggle to get in the calories and oz. However, I can tell that Dan is doing much better...even with the thrush.

I just wish we could fast forward a couple months so he could start to enjoy some foods. I feel terribly guilty eating lately.

I told my momm I tough it was thrush....jeesh-wish someone would listen to me.
We have an rx for it, will ask her to take it.
Her weight is down. I think she's probably about 120. She is so hungry, no matter waht I am making her it's almost to difficult to eat.
Margaret-
I'm getting ready to call you.
Thanks Liz and Margaret

Margaret, I noticed a big difference during our 6th week of recovery, hubby was willing to try new foods, still can't taste like he wants to. but let me assure you it will get better, every day now is like a minor miracle. I never thought we would get to this point. I remember someone posting that this stuff will be a memory, my husband would say "ya right in your dreams," but you know its true. We now say remember when... you couldn't stand the sight or smell of food, when you spent EAster in the bathroom, when you couldn't talk to the kids on the phone. It is truely amazing, so please tell your husband to hang in there, and you too, you have been a great caregiver- for this to shalll pass. Thanking the Good Lord everyday. LJ

Hello everyone.
My friend is in his 3rd week of radiation now and is doing really well. The problem which is upsetting him is that he is losing his hair on the back of his head....in the middle...not the top or sides or by neck area. It is a huge bald spot.

Has anyone else experienced this?

For the person that has been getting dehydrated and finding it hard to eat or swallow, try Ensure Plus or Boost. It works and they have different flavors. It is best to drink everything with a straw.

For the person experiencing lots of pain, ask the doctor for a prescription for morphine or percocet.

I'm sorry, I forgot to write down info on the bottom.

I am a g/f to male, 66, Salivary cancer to Paratoid gland. Surgery with 6 weeks of radiation. He is starting his third week. He is being radiated by his ear, middle of jaw and collar bone.

Beth