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)