I have just been reading an old post about dealing with phlegm caused by radiation and noticed that every single responder (with the possible exception of Ezjim who doesn't mention it in his signature) had received concurrent chemo. Is it a fact or an assumption that it is radiation that causes the phlegm rather than chemo (or cetuximab)? I ask this because my Alex has been suffering with phlegm for the entire 6 months of his treatment which started in March with induction chemo including cisplatin. And he didn't start radiation till July...
Hmmm
Karen
I have no idea what caused this stuff but I still have it and have to watch when I cough. It seomtimes sneaks out without warning and looks like a giant slug that somehow got into my throat. It can be embarassing. I wish Alex well and hope it lets up one day soon. I think maybe the neck dissection has something to do with it. It has been my constant companion for over 3 years .
we don't have handkerchiefs anymore, we have handtowels
Hello Karen:
It's been almost 3 years since my treatments (chemo and radiation) and I have been fighting this CONSTANT phlegm (mucus) crap and have been told it is from the radiation, but have read chemo does it too. During and right after my treatments this crap wasn't as bad as it is now, so I wonder. After I get up in the a.m., what starts with me now is a constant foamy white gunk coming up into my mouth. Mine has the most putrid sweet taste that it makes me sick to my stomach. This type started about 6 months or so ago, and I started investigating other reasons for it. I go to an ENT and have sinus scans; 24-hr. monitoring acid tests which I wore tubes in my nose for 24 hours; endoscopies that did show acid reflux, but I take two Nexium/day so the gastro dr. attributes the gunk to radiation. I've been to Mayo in Jacksonville,FL, to no avail. Does Alex have the sticky mucus stuff in his mouth too? That's another thing - food sticks to my teeth, jaws, and gums. Heck, it's a never ending battle. Others on this forum get over the phlegm/mucus several months after treatment, but still have the constant dry mouth. I guess time will tell as to what Alex will have to deal with. My chemo dr. said it was the radiation, and my radiation dr.said it was both, so no answer. If all of this info serves any purpose, it'll be to let Alex know he's not alone.
julieann
Well guys, I had NO chemo, only XRT radiation and had awful phlegm starting about the 4th week of treatment. I guess it is possible that chemo may make it worse, but it would be hard to imagine.
I was on Salagen during treatment and took Guiafenex (sp) to help loosen the phlegm. All I remember is gagging on the stuff and standing over the sink pulling huge ropes of it out of my throat. It's been too many years for me to remember when it subsided, but I'll guess a couple of months after treatment.
Take care,
Eileen
My aunt had only radiation and had the horrible phlegm also. Her MDs told her the rads would cause this.
I had the stuff after treatment Eileen mentions but it stopped in about 2 months. I now have constant coughing and never know when the goo comes with the cough but it is small amounts with black and green globules embedded within. It is very salty. I feel like I need to cough up more but the coughs are usually dry. I drink about a gallon of water a day and if I get too dry, the goo gets more voluminous.
Eileen:
You may remember my old song sung to the tune of Crystal Gale's "Don't it Make Your Brown Eyes Blue" but it was more of a "Don't it Make Your Brown Goo Clear". Once it turns clear after treatment, you have officially weathered the huge ropes as you so accurately describe!
Ed
thanks everyone - I am now more confused than ever. I am beginning to think there are two mechanisms at play here. The reasons for the questions are twofold - one I am a nosey parker and need to know the why for everything, and secondly, I am trying to think through what medications might work by considering the mechanism of the body's response and pair it with how each drug works. Without knowing exactly how this "phlegm" (and I am thinking it is not actually phlegm) is generated and where it is coming from, my attempts at a logical approach are thwarted. It is starting to sound like the problem is that the mucous that IS produced, is the wrong consistency which is what causes the feeling of too much, hard to clear, choking, frothing etc. I think I need a pharmacologist rather than the oncologists who seem to remain clueless.
Sitting here with normal saliva and mucous, I realise that I am constantly swallowing at an unconcious level and maybe this becomes conscious and problematic when the mucous is too thick and stringy. My Alex also complains that it "sticks" to his teeth (all 8 of them).
Has anyone ever tried a mucolytic?
This is a cough medicine available over the counter and it is usually recommended to help a dry cough. The idea is that the product thins mucous which collects in the lungs and makes it easier to cough up. As the product works all over the body, I wonder if it might improve the consistency of whatever this "phlegm" is. The name of the product in Australia is called Bisolvon but others might know it as Mucosolvon. Its generic name is bromhexine hydrochloride
Karen
Hi Karen you may want to ask the dr's about a patch? While my sister was on a week break from radiation in the hospital they gave her some kind of patch behind her ear that made the mucos go away. I can ask the dr's what it is on Monday. I have also hears of people using the musinex which is what it is called her for the mucus also. As with anything ask the dr's and double check with your pharmacist if it can be used with your husbands current medications.
thanks Susan
would be grateful if you could check with your doctor about the patch. Also, do you know the chemical name of Musinex? The drugs we have in Oz are often named something else although the generic (chemical) name is often the same or similar enough for me to figure out what it is.
And yes, checking with the medics goes without saying - (although I probably SHOULD to say it everytime
)
thanks again
Karen
As a 4 year producer of the thick crap I would be interested in anything that would work so keep us all posted. Like you I need to know the whys of everything and I haven't found anyone yet that has been able to explain this much less cured it. I have tried various cold remedies but all they seem to do is dry me up while not decreasing the production. I produce it all day long (not much at night) and it seems that every 30 mins or so I have accumulated the size of a small pea and spit it out. I drink water constantly all day long and that doesn't help this problem. I do seem to produce more at meal time but I usually drink milk, always have, with each meal so I don't know if that helps my production as some have said.
Clueless in Gulfport!
Klo
Mucinex's active ingredient is Guaifenesin and some OCF posters have found relief from it. I second David's request to keep us posted if you have any success. Throughout this 3 year struggle, the only constant has been phlegm. Conceptually, thinning out the phlegm makes sense as a coping mechanism.
Early on I had to use seltzer water to break it up, but my surgery which left me unable to swallow, also eliminated dry mouth entirely since even the non perceptible trickle of saliva pools up quickly. This seems to keep the phlegm moist enough to cough up much more easily with just a gargle of plain water.
However, I'd gladly trade this ease for the former difficulty and choking if I could swallow again.
Finally a Google search turned up an Australian Cough medicine called: Duro-Tuss Chesty Cough Liquid Forte which is a mixture of both Bromhexine, Guaifenesin
charm
Thanks Guys
I will get my guinea pig - er my Alex to a try cough medicine that will make his mucous/phlegm runnier rather than the suppressant or decongestant kind which would do the opposite(I am hoping these are the cold remedies David already tested). Interesting that fizzy water clears "phlegm" better than still - Alex has experienced this too - I would guess that the carbonation is involved in breaking it up to make it flow easier. Also interesting that David experiences an increase in fluid before food as this suggests at least part of the problem is actually "dysfunctional" saliva (remember Pavlov's dogs).
Alex has also made the observation that milk adds to the problem but it is short term (but think this is more of a feeling than an actuality) and as weight and nutrition is a large part of Alex's daily penance, milk remains on the menu. Poor maligned milk. I was told that milk lines the stomach which will slow the effects of alcohol as well as protects against ulcers. Luckily, as a cheap drunk with a sore tummy, I have stong bones which comes in handy when I fall over
but I digress ... Here's the idea I have been thinking about all day (no medical knowledge in this at all). What if we are dealing with 2 differing fluid production processes (or goo as Uptown so eloquently describes it)? Mucous from nose and throat continues unabated but possibly thicker than before. Saliva produced at the front of the mouth around the teeth, tongue and cheeks is nearly non existant. Either mucous is now thick and difficult to shift or saliva no longer mixes with mucous to make it manageable but in either case, it just sits there requiring a conscious spit or swallow rather than trickling unnoticed down the back of the throat. An added complication would also be the impaired swallow that many experience. This would produce the sensation that there is more than normal production of "goo" or "crap" wouldn't it? So the idea of thinning out the mucous would seem to be the goal regardless of the cause?
Would appreciate others thoughts on this (more descriptions would be good as well as tried and tested suggestions) but in the meantime, I am off to research available mucolytics (thanks for the Durotuss tip Charm) and find out what the mechanism of Guaifenisin is.
My unsuspecting guinea pig awaits ...
Thanks again everyone.
Karen
Hi Guys:
I have the gunk/crap ALL the time too, but mine has the most putrid sweet sickening taste (all the time). I have yet to find someone else that has that problem???? Anyone? I do have the sticky saliva sometimes too, and my cheeks on the inside are always sore, so some of the Magic mouthwashes do help (a little). My last treatments were almost 3 years ago
julieann
Geez, I must be getting goofy. I went back on others who wrote on this subject, and lo and behold, I was one of them. Sorry, forgot I already replied.
julieann
Karen,
I have thought about everything you just said BUT can find no doctor who can address these questions with me scientifically to give any of these thoughts credibility much less say "Oh hear's how to stop that!"
Go Guinea Pig Go!!!
mine started in the 2nd week of radiation,mostly occurs once but sometimes twice a day and less often any more than that (worst was having 5 before lunchtime) generally i can bring it up ok but 2 or 3 times a week have an eye watering time of it . i mentioned this to my oncology dr last visit and he sent me for precautionary chest xrays then at outpatient 3 month check with surgery dr he said the xrays came back all normal . i've gotten used to them and apart from the stubborn ones creating a gagging sensation they dont worry me to much.
So what my sister is on is actually the sea sickness patch. Believe it or not. She puts the small patch behind her ear and within a few minutes the mucous is gone. You need a prescription for it though and l don't know what dr's actually use this for mucous. The drug that is in the patch is called SCOPOLAMINE.
Keep me posted please on who else uses this. I think it is rather interesting.
hi susan, i had those when i was in hospital recovering from surgery to ease my excess saliva issue and they had some effect for that. unfortunately they werent subsidised and were about $18nz each so didnt go on with them after i was discharged.
Thanks Rosalind. That's good to know. I wonder if my sisters insurance will cover it. They have really helped her.
Thanks for posting the info on SCOPOLAMINE. This patch is something I havent heard of before, glad others may benefit from it.
Thanks for the scopolamine tip. This is an anticholinergic so it is of interest that it is being used for its side effect (dry mouth). I am also embarrassed to say that my own company produces 90% of the world's duboisia plant which is where scopolamine comes from and I never even thought of it. If scopolamine works, there are lots of other anticholinergics out there that will do the same thing.
Rossnz might be interested to know that there are a couple of antihistamines available over the counter in Australia and New Zealand that are a lot cheaper than $18 a pop. If I give you the names, will you promise to talk to your doctor and/or pharmacist first? Ok. Phenergan and Polaramine are both old style antihistamines (drugs for hay fever - sorry can't remember the chemical names - too long ago) but were also used for travel sickness. My mother gave Phenergan to us kids, making good use of the other side effect - it put us to sleep for the entire car trip. And that of course, is the down side.
Maybe Susan can enlighten us, did scopolamine make your sister drowsy? I realise this is likely a dumb question given the chemo, radiation, lack of nutrition and being really sick probably wiped her out but thought I would ask anyway.
I am still exploring the thinning of the mucous idea rather than drying it out, but my guinea pig although committed, remains forgetful. I don't think he has had enough therapeutic doses yet, and he needs to compare how he feels across a number of days at different times.
I am going home to Mother tomorrow for the first time in 6 months (she lives 100 miles away so popping in for coffee is not really an option) and leaving my Alex to his own devices for the weekend. Hopefully, he will remember our experiment and will have lots of comments upon my return.
Thanks everyone, this has got me all fired up and for the first time in a while I feel like I can contribute
I know you have to get away but I don't know how reliable any trail using a GP can be when you leave the GP in charge of the dose schedule??
thanks for that , i'll look into it . the patches didnt make a huge difference in hospital, maybe a 1/4 to a 3rd less .
Yes david, I was concerned too that the guinea pig might not be terribly reliable - especially when I found out the day before that he had taken himself off pain meds 2 weeks ago after being told that WHEN he was ready, he needed to ease off stepwise to avoid withdrawal symptoms, depression etc. He told no one, still had a mouth full of ulcers and complained his shoulder and back hurt from multiple stab wounds courtesy of the cardiothoracic department. He tells the doctors all the time that we are intelligent human beings but I am afraid I can only vouch for myself at the moment (and even that is a bit questionable since chemo brain seems to be catching).
However, I am as sneaky as he is "forgetful" and worked out that he should have taken 120mLs by the time I got home which would pretty much empty the bottle. The bottle was empty this morning so, provided he wasn't even sneakier than me, and didn't tip the doses down the sink, he seems to have been conscientious.
Alex has been talking about "giving back" and he recognises this might help others if he can stay focused and objective.
Nothing much to report yet, Alex complains of frothing at the mouth when he first takes a dose but says he thinks the phlegm is not as bad as it was. However, he thinks it was improving before he started the Bisolvon anyway. We will check that perception when he has a week without anything.
There is a fly in the ointment - bromhexine is not available in the US. However, I have LOTS of time this weekend and will research alternatives such as that guanithingamy (assuming that the concept works). Unfortunately, this weekend is grand final weekend for the Rugby League and to add insult to injury the Australian Rules football Grand final is being replayed as a consequence of the fools playing to a draw last weekend (why can't they just play a round of scissors, paper, rock like normal people). So I have to suffer TWO Grand Finals on one weekend. BLECH!
I took Guaifenesin in pill form, huge horse pills, and was on Salagen and I believe both helped but still had thick phlgem.
I think it was my RO that told me this and can't remember which one set is which. We have two sets of major saliva glands, submandible under front of chin and the supramandible up by the ears. While they both make saliva, one set of these sets is responsible for making the thin stuff that thins out our saliva and the other makes the thick stuff. It's when the thinning set stops working that we get this yucky thick stuff that gags us. Since I had XRT for an unknown primary, it's a wonder that anything still works. I can only attribute it to the meds I was on.
I thought you might put that tidbit into your research project.
Take care,
Eileen
Update from Alex: The results of using a mucolytic (something to make mucous/phlegm thinner and easier to clear), is undetermined. Alex reports he foams at the mouth when he takes it. He also "foams" when preparing to eat something acidic like pineapple and lemon, and sometimes it happens when he prepares to talk so we assume this is Alex's new normal for salivation.
The Bisolvon doesn't not appear to be good enough to stop the hacking and choking that inevitably occurs as soon as he comes upright each morning but he thinks the phlegm is not as bad through the day. He thinks this was improving before the Bisolvon though so we are unsure if it is time or drug that is making a difference. He is going to try a week without now (the crossover) and see if the condition of his mouth deteriorates, stays the same or improves.
More next week
Karen
Good Morning All:
Being new to this site and having finally browsed many of the topics, one thing that I have been seeing over and over is the question of what to do for heavy mucous and the discomfort caused by it.
I'm by no means an expert and have been dealing with the same problem since about week 5 of radiation. I'm now 7 weeks post treatment. Initally , the strings mucous were unbearable and kept me gagging for days at a time. A friend of a friend who is also a doctor had gone through SCC, BOT approx two years ago and gave me a call to see how I was doing and I told him of the mucous problem. He is the one who suggested I try Glyocoprrolate. It is an injection used in the OR to temporarily suspend sucretions. He told me it was the only thing that gave hime relief. I asked my RO to prescribe it to me and she did. It is taken via injection SubQ, and I do it myself at home. I have to say it's been a life saver. The injection provides 4-5 hours of relief... no mucous. I am allowed an injection every 6 hours.
I used it for approx 3 weeks steady and now, thankfully, only every few days if the mucous is unbearable. I am suprized to have only seen this this drug mentioned here only once and then it was the pill form, which by the does not work very well.
It is my sincere hope that this information may provide some relief to some of you out there suffering with mucous.
_________________________
SCC, BOT. Diagnosed May 19, 2010. TX 3 chemo and 35 RT. TX finished on Aug 17, 2010
Did a little net surfing as you do when something new is suggested.
Just mentioned this to (klo) over coffee and sent her the link.
As with all medications you should check with your doctors
first. There may be Precautions,Side effects and Contraindications
FDA Approves Glycopyrrolate Oral Solution for Chronic Severe Drooling
http://www.medscape.com/viewarticle/726048At the bottom is another link to;
Drooling (Otolaryngology and Facial Plastic Surgery)
Hi Everybody:
Gabe you're right about researching anything that is new, as there may be side effects or contraindications associated with that particular drug. That being said, I've been using glycopyrrolate for the past few months with no adverse side effects. Please also note that as I mentioned in my previous post, what I am taking is an injectable medication. I take 1cc via injection at a time NOT glycopyrrolate oral solution.
This drug may not be for everyone. I just wanted to let everyone know that there are options available.
Hope this helps.
Thanks,
D.
Alex update final: We are now a week without the mucolytic to see if Alex felt a worsening of symptoms of thick phlegm without the help of a medicine to loosen and thin mucous.
Basically, he is not sure.
Conclusion is that if it did any good, it was not dramatic. Alex is absolutely sure it did not make anything worse. The problem is so complex - different people have different issues, with some being driven crazy by an overproduction of thick mucous and would give anything for it to be gone, whilst others have some thick mucous but the main problem is lack of production of anything. On top of this, type of OC, field of radiation, length of time since treatment and all sorts of other variables confound the issue.
For the group who just want the thick mucous to be easier to clear, Alex's trial was probably a failure unless higher doses or a different agent would have made a difference. I can't ask him to do more than he has already done - he has humoured me and put up with my daily questions about foaming, and quantities and how often and what time blah blah blah long enough.
Maybe when we have a little less going on, I can pressgang him into service once more for some other screwy idea I have but right now, he needs to enjoy feeling well and eating his way to a weight that will make our dietician happy enough to recommend removal of his PEG (still aiming at a knife and fork for Christmas since I don't know when Thanksgiving is
)
Karen
Karen,,
Were you a Marine Drill Sargent previously? lol
When I rule the world I am going to ban smoking and banish non-numbers people to an island in the middle of the ocean
I agree with the smoking but not so sure about the non numbers people thing as I need some "balance" around me. The things I see, I see clearly and quickly. It's the things that my mind doesn't see that my non numbers person wife helps me with. Like how it's possible to spend large amounts of money while actually SAVING me money. Like why exercise resulting in any sweat IS NEVER good for you. Like why shopping in NYC is much better than any local store. Like why driving a Mercedes is best regardless of what Consumers Reports says. Like why colors other than white are preferable for many things. I could go on.
Glad there is still someone around that is trying to jump start this economy. Good for her.
Take care,
Eileen
This forum is firstly for information and support. However, a most welcome side effect is a good laugh. Thanks people
Karen
My brother has had no treatment of any kind and he too gets the thick mucous on a regular basis. Seems to usually be at its worst in the morning. Anyway, I tried giving him club soda. He holds it in his mouth and swishes it around. It brings out a larger (huge really) amount of phlegm shortly after he spits the club soda out. It makes him feel a lot better. I hope this gives you some relief if you decide to try it.