My husband was dx in early May. Despite the many side effects of chemo and radiation(nausea, hair loss, thrush, low wbc, rbc) the one that has been most troublesome for him is the excessive build up of phlegm. He sleeps sitting up until the saliva builds to a point where he wakes up. (the sound is similar to what I would lovingly describe as coughing up a hair ball)
He is on the feeding tube but the sores in his mouth are preventing him from taking anything by mouth ... even with the help of a morphine patch and the magic mouthwash. I read about a patch for motion sickness and it helped to dry his mouth somewhat but then the thrush was back with a vengence! Any ideas about how to help him?

I wish someone other than I had responded to your question because I, too am looking for a solution to excessive phlegm. My husband does not have a PEG, indeed refuses to have a PEG but the excess phlegm prevents him from being able to eat or drink. He has an IV every evening for hydration. In his nursing home where he is staying during radiation he has a machine that sucks the mouth phlegm out, but it doesn't reach the throat phlegm. He has swabs he can dip into a liquid and run around the inside of his mouth and he has two kinds of prescription and he has Biotene from Wal-Mart. But right now, with 5 radiation treatments to go, phlegm is is biggest problem.

Phlegm - a better term than mucous since that gets patients confused with mucositis which includes mouth sores -
Still Phlegm has been and remains the bane of my cancer TX. After two years of fighting it, the only thing that has consistently worked for me is plain old Seltzer water - the carbonation acts like little scrubbing bubbles to help lift the sticky stuff into spitable form. The big bottles in the stores do not work as once opened they lose the all important fizz.
I routinely empty my local Safeway of their little metal can six packs of their generic Seltzer. Just pop open the tab and rinse, then if possible gargle and spit. Not a miracle cure but it does clear out the majority of my phelgm
This second time around, the phlegm was so bad, and so prevalent that the home suction machine (covered by insurance) worked if I put the tube down my throat to the point of the gag reflex and around the gums. I am finally going to return it this month as now I can control it with seltzer. I did sleep sitting straight up with pillows from March to July but have gradually progressed to just having the neck elevated. Back then I got up twice a night to keep from choking. finally settled into a routine of waking up for a hour at 3 or 4, rinsing my phelgm out, posting on OCF, rinsing my phelgm out and sneaking in an extra can of Jevity.
This last week is the first time I have slept through the night since the operation.
Whew, long post, but the point is that YES, it is very hard now, but it will get much much better with time. And many others have done quite well and recovered much faster. I still need to use Seltzer two or three times a day but the phelgm is now liveable. Good luck
charm

That is a very common (like 99%) side effect of the radiation and it too will pass in a few weeks. Mine was bad but not as bad as others and some rented a portable suction machine and have advised others since then to do the same when it gets to the point that you are describing.

Re the PEG and not swallowing....the swallowing muscles can quickly loose their memory on how to swallow in a matter of days so please encourage him to swallow something everyday. Doing this may avoid a lifetime of swallowing problems post Tx.

Stumble,

You don't mention radiation in your Signature Line but I assume your husband had that?

Who treated him at Moffitt?

Was he tested for HPV?

He must continue to get calories and hydration or it will get much much worse. Believe me I speak from experience.

Sorry, I corrected my sig. I don't remember who at Moffitt - so long ago, but I will never forget Joseph Pearlman at VA across the street. Now, with 5 radiation treatments left, he has gone from size 48 jeans to 44 jeans. 48 size jeans are so hard to find! He stays in Tampa 5 days a week and we come home weekends. At home he saws logs so he is not emaciated. I will try seltzer - going out now to buy some. Thanks.

The seltzer water sounds like a nice natural solution. I'll get some ASAP! I hate the thought of giving him any more medicine to combat the side effects of other medicine. I've even discussed giving him green tea and his chemo nurses reminded me how caffeine can dehydrate you.

I bought a 12-pack of seltzer and he finally got around to trying it. He took a mouthful, swished and then shot it out saying it burned like he-l. This morning I gave him a glass of Jumex Guave juice. Very bland to me but tasted horrible to him. He will and has finished a bottle Bolthouse Mocca Cappuccino So I guess I'll be giving him more of that - 21 g of protein in each bottle. I wish we could take the suction machine home with us.

Sandy

I would think a little burning to get rid of the thick junk in the throat would be well worth the burn. I am past 2 years and that crap is as bad or worse than it was. Like everything else, it takes time.

My hubby drank so much water, I can't imagine where it all went!!! But truthfully, it seemed to help with the phlegm. Remember that old axiom about having a cold and how fluids thin out the mucous? He also, did the seltzer, rinsed with the salt/baking soda solution, and Biotene mouthwash and dry mouth spray (and still does those two.

I still think that the water was the secret. Good luck!

stumble

sorry that the seltzer exceeded his pain threshold. Like EZJim, I just routinely did things that hurt to deal with choking etc.
It did help that I got major pain meds, including the fentanyl patches and if your husband has extensive mouth sores, I hope they are treating his pain properly. I did have to switch pharmacies once I quit using the hospital's as Safeway's "corporate" policies limited their ability to fill my opiate scripts of 100 or 200. Don't worry about that old doctor's tale of becoming addicted, with cancer pain not really an issue.
finally, ask your doctor and hospital about prescribing a home suction machine. the way mine worked is there is a one time delivery & rental fee, then it was a very low monthly rate, almost everthing covered by insurance. It actually worked better than the hospital's, with a mini-engine and plugs right into any outlet.
good luck

Stumble & cjack,

I believe I have heard others say that you can rent those suction machines.

Stumble

Oops forgot to comment on your husband's refusal to get a PEG.
I was just as stubborn my first time around but did continue to force Ensures down. I even restarted the PEG wars on this board when I joined and warned PEG users they would forget how to swallow in the new normal. Instant Karma as the salvage surgery for the recurrence required a PEG when I failed the Barium Swallow Test. Unfortunately, in this case, from your description, a PEG may actually be the best for him. Once I got mine in, it wasn't so bad. A Peg meant admitting that I was really sick when I was adamant that only being "positive" about being "healthy" would get me through.
But if he needs an IV, he should rethink it. I never once had to be hydrated or get any IV except the chemo so not getting a PEG the first time around worked for me.
He needs to swallow liquid or solid food or else get a PEG.

Thanks to all- I read your responses to my husband Dan and he promised to try and swallow something every day- he started with good old chicken soup which seemed to break it up and help him to swallow. He agreed that a little burning sensation was a small price to pay for relief. We ran out and got some seltzer water too! He plans on trying that later this week. I think all of these ideas give him hope and the extra push he needs to keep moving forward. I also reminded him of where he's been--although recovery has been slow he is sleeping with one less pillow to prop him up...it's funny how you measure progress with this disease!

It amazes me that Phlegm has 2 silent letters in it. Think we should spell it Flem. The P & silent H & G could then mean Please Hell Go.....

cjack,
All of these wonderful posters are giving you great info. Unfortunatly, what works for one person doesn't always work for another.
Radiation damages the saliva glands. Saliva is composed of two types of secretions serous and mucous. Radiation wastes the serous secreting component of the glands worse than the mucous part. So, saliva gets thicker and more sticky "phlegm like" and less runny and "water like".

Keeping hydrated is helpful, using a humidifier in the room he sleeps in may help, keeping some water by the bedside may help, drinking water prior to trying to eat will help lubricate the mouth, lemon drops can help stimulate saliva flow (lemon may hurt the sores), drugs like salagen help some people, and saliva substitutes can also help.

Mouth sores are nasty and hurt a lot. Magic mouthwash is good. Biotene has an enzymatic nouthrinse that helps many of my patients. Using toothpaste that does not contain "SLS" can reduce the incidence of mouth sores as SLS can encourage sores to appear. Closys toothpaste (available at Walgreens) does not contain SLS and there are other toothpastes available that do not contain SLS ask your pharmacist. (SLS is sometimes on the label as sodium lauryl sulfate, or SDS sodium dodecyl sulfate)

"Thrush" is a fungus, candida albicans, that is part of the normal flora of the mouth and can be an opportunistic infection that occurs when the conditions are right. This needs to be treated with antifugals such as nystatin oral suspension or diflucan.

Saliva glands can regenerate in some people.
Excessive phlegm, mouth sores and thrush all at the same time is a monumental problem but, it can be overcome with proper treatment and perserverance. Talk to your Docs.
I hope this helps a little.
Cheers,
Mike

your info helped a lot- thanks so much

I have written before about excessive mucus, and now that others are mentioning it, I would like to reply. I had my tonsils removed in November 2007; squamous-cell cancer was found underneath. I had 7 weeks of radiation with one day a week chemo. That ended in January 2008. During, after treatments, and today I still have excessive mucus. I had a feeding tube during and after my treatments, but had it removed because it became infected. I managed to drink Boost and Ensure, and could swallow some liquids. I have had my esophagus stretched three times, which helps with swallowing. Now, after almost TWO YEARS, I still have the mucus. At first, it had a very salty taste. I haven't heard of others mentioning a "taste" associated with musus. Now, since about 6-months ago, it has changed to a very putrid sweet (snotty, yuk) taste which makes me have no appetite and get nauseous when I smell food. I hate to use such a bad definition, but that describes it exactly. It's really sickening. Nevertheless, I have been to every doctor I have and they all say the mucus is from the radiation, and the taste from nerve damage that transmits taste signals to the brain. Some of the doctors say the sweet taste is very uncommon but others have had it. I went to a neurologist last week who prescribed a medicine that might alter the taste away from sweet. I am going to try it. What I would like to know from you guys is if anyone has experienced the "sweet" (I won't use the other word) taste? I have even had my doctor check me for diabetes and other non-related to radiation ailments. Thanks for your replys. I haven't learned yet how to put my information below my comments, but I am a "young" recently retired 71-year-old technical writer who used to be in good shape, but now I'm struggling to gain weight.

Julieann, I think we all have the taste, just never mention it.As i sit here typing this I am choking on the thick goo in my thoat.It doesn't cough up or out and won't go down, so you just keep coughing and choking until it eases just a little. Coffee or water doesn't move it either.

My doctor wrote a prescription for an in-home suction machine to help clear my mouth of the excessive phlegm/saliva. My insurance paid for it and had it delivered right to my house and then picked it back up when I was finished with it. I used it for several months. I would also keep a glass of Ginger Ale or 7-UP on my nightstand to help clean the suction straw. After I would suction my mouth, I would then dip the end of the suction straw into the glass and the carbonation would help flush the phlegm through the tube. I would highly recommend everyone to get a suction machine!

I realize the phlegm/saliva is horrible enough, but for me it's the sweet putrid taste that's worse. It makes me nauseous and I have no appetite. Does anyone have a solution for disguising the taste or dealing with it? Thanks in advance for any replies.

julieann

I hate it for you Jim - at least I can cough (hack, yuk) mine up (continuously). I just wish I could somehow get rid of this putrid taste. I pray yours gets better.

julieann

Hey, did your doctor have to order the home suction machine? It seems like that might be something good for my father. He has been dealing with huge amounts of phlegm following the dilation of his esophagus. He's miserable right now and we are trying to find ways to make him more comfortable.

Julieann, the biotene mouthwash disguises the taste pretty well. I use it a few times a day. Brushing the tongue at times makes it worse. But that is a ne=cessity .

WE have done all of this talk about excessivve phlem > since I had the tubes installed, this stuf is really wicked and hard to keep free of. Not little chunks bt a mouthful at a time.

Hi Jim:

I just wonder if it ever gets better. (Been 2 years in Nov) I'm constantly hacking (yuk) up gobs, but what even makes it worse is the putrid sweet taste. Like I said before, not too many others seem to have the sweet taste. It's so sweet, my mouth is puckered inside when I wake in the mornings, and so sickening I have no appetite whatsoever. I try to eat what I can, but supplement with the Carnation VHC, which I believe you recommended to others. Here I am complaining and others cannot even swallow. I feel so guilty at times. I was pleased to read of your good results and hope you keep improving more and more every day.

julieann

Rett,
You need a script from your doctor for the suction machine. I would suggest you get the portable one. It is usually covered by insurance so needs to be ordered from whatever supplier that your insurer uses. I suspect his nurse will order for you. Cost runs about $25-40 a month for a rental.

Take care,
Eileen

I can't tell if the taste is sweet or just plain nasty, LOL But it is terrible. When I see the green flys heading my way I close my mouth fast or I wouldlike I was on a motorcylce with my mouth opened for a few miles.

When you say Selzer do you mean sparkling soda water.

Thats the one Jon.What we call fizzy drinks the americans call soda...confusing isnt it lol,what we cal soda water they call seltzer.