any ideas to fight (UPDATE)TO MANAGE THE PAIN & MUCUS foam and abundant mucus coming up?

Chris and Marianne

Now the big problems are the pain and mucus

Hi friends, you were so wonderfully helpful and supportive last time :-) my hubby just finished 7 wks Rad & 3 chemo. Unable to eat or swallow ANYTHING. On PEG. Treating Thrush, and is suffering from mouth/tongue/throat pain...What is really getting him is the mucus and foam building up in his mouth. Is there anything you can suggest?

p.s. Squamous Cell Carcinoma on base of tongue re HPV

thank you and God bless you all

marianne

phrannie51

Hi Marianne....

First...WHOO HOO on finishing treatment!!  

I didn't suffer much from mucous, so my knowledge is hearsay from being on this board.  A couple of people got some relief using Musenex....the big majority tho, it seems boxes and boxes of kleenex, and some had a spit bucket.  Knowing that the mucous is temporary, might help the frustration. 

Thrush makes things pretty darn tough to get into the  mouth for swallowing, but he needs to keep trying everyday....I had good luck with L-glutamine powder mixed with water when my mouth was completely tore up...it didn't sting, where plain water was agony. 

Others will chime in here with tips and tricks on the mucous, and how they managed to keep swallowing something on a daily basis...doesn't have to be much, just something.

p 

CivilMatt

it don't come easy

Marianne,

He is in a good place (finished with treatments) and in a bad place (mucus, thrush, mouth, throat and tongue pain and foam).

For me I besides the boxes and boxes of Kleenex, a utility room sink set aside for coughing, spitting, hacking and dry heaves I used the standard baking soda, salt and water mixture for rinsing.  For the mouth, throat and mouth pain I relied on Magic Mouth Wash and liquid Lidocaine.

Additionally, I drank lots and lots of water (even while on the PEG).

I know it can seem impossible, but a little at a time goes a long way.

Keep kicking butt,

Matt

Tim6003

CivilMatt said:

it don't come easy

Marianne,

He is in a good place (finished with treatments) and in a bad place (mucus, thrush, mouth, throat and tongue pain and foam).

For me I besides the boxes and boxes of Kleenex, a utility room sink set aside for coughing, spitting, hacking and dry heaves I used the standard baking soda, salt and water mixture for rinsing.  For the mouth, throat and mouth pain I relied on Magic Mouth Wash and liquid Lidocaine.

Additionally, I drank lots and lots of water (even while on the PEG).

I know it can seem impossible, but a little at a time goes a long way.

Keep kicking butt,

Matt

I wish there were a magic answer to this one ...

..but there's not.  I know it does not make him feel better, but so many of us on here have been there and done that...it does end.

I used gingerale and it seemed to cut the mucus quite a bit. I had the foam too, but it seemed the mucus was there to torture me more so maybe I did not notice it as much (the foam).

Very glad for treatments ended ...hang tough and tell him we are with him!

Tim

Noellesmom

fixes

For the mucus, Jim's doctor put him on Mucinex - over the counter medication that worked very well for this.

Foam?  Although Jim spat a lot I don't believe he ever had foam.

He rinsed his mouth morning and night with salt water, per the doctor's orders.  Would not miss that.  It was the last thing he did at night.

Finally, because he developed dry mouth, he started using Biotene spray and rinse as needed.

Chris and Marianne

CivilMatt said:

it don't come easy

Marianne,

He is in a good place (finished with treatments) and in a bad place (mucus, thrush, mouth, throat and tongue pain and foam).

For me I besides the boxes and boxes of Kleenex, a utility room sink set aside for coughing, spitting, hacking and dry heaves I used the standard baking soda, salt and water mixture for rinsing.  For the mouth, throat and mouth pain I relied on Magic Mouth Wash and liquid Lidocaine.

Additionally, I drank lots and lots of water (even while on the PEG).

I know it can seem impossible, but a little at a time goes a long way.

Keep kicking butt,

Matt

Thank you Matt ( and all) he's doing the mouthwash and lidocaine and thrush med BUT I can't get him to drink anything by mouth. says it hurts too much. ?? Dous anything cut down the mucus foam?

Marianne

Chris and Marianne

mucus

thank you, you guys R great!

Would you know if I should look for liquid mucinex? He can't swallow anything?

M

Chris and Marianne

SCC

Any one else have "Squamous Cell Carcinoma" mass on base of tongue. Related to HPV?

M

Ingrid K

Chris and Marianne said:

Thank you Matt ( and all) he's doing the mouthwash and lidocaine and thrush med BUT I can't get him to drink anything by mouth. says it hurts too much. ?? Dous anything cut down the mucus foam?

Marianne

Chris must try to swallow

Marianne

Just a quick note:

He MUST MUST MUST try to continue to swallow.  Even if it's just a few sips of water every hour.

If he does not use his swallowing muscles, they will stop working for him.  It can happen very fast, and it is one of the main reasons some doctors do not want us to have PEG/feeding tubes.

Water tasted horrible, but I was able to suck on ice chips and crushed ice.....and it was enough to keep the swallow muscles working.

Or try milk...it is actually easier to swallow thicker liquids than it is to swallow water.

GOOD LUCK to you both.

 

 

fishmanpa

That old familiar song....

Hi Marianne,

Welcome to the forum. There are many here who had BOT HPV related SCC. My primary site was never found but they believe it was BOT and my body eradicated it. Unfortunately, not before it spread it's joy to my lymph nodes. 

I finished treatment April 24th so I'm a month out. It's taken that long to gain some ground but I'm stilll far from any sense of normalcy. Concerning the mucous and foam, I'm not sure what you mean by foam but I dealt with and still deal with thick stringy saliva. The only thing that cut through and helped was the water/baking soda/salt/glutamine rinse. I rinsed 4-6+ times a day and went through several boxes of tissues as well. Some here have used Mucinex (they have liquid) with some success. It took about 2-3 weeks to see an improvement. 

Believe me, I know what he's dealing with concerning pain when swallowing. I got through treatment without a PEG but had one put in the last day of treatment as I had lost too much weight and was dehydrated and unable to take in enough nourishment. Even after the PEG and getting 99% through the PEG, I continued to drink water. Chris HAS to continue to swallow! Even if he takes a sip an hour, he HAS to do this. You mentioned he's taking meds for thrush and Magic Mouthwash. Is he on pain meds? If not, ask the docs. There's no reason he shouldn't have his pain managed. I'm still on pain meds although the doses are less and further apart now. 

I know what you guys are dealing with and it's not pretty but hang in there. The next couple of weeks are going to be as intense or more than the last couple of weeks but it will get better. 

Positive thoughts and prayers

"T"

 

CivilMatt

scc. bot with a side of hpv+

C&M,

I was hpv+ and I don’t remember a thing, my defenses were compromised.

Matt

Noellesmom

Chris and Marianne said:

mucus

thank you, you guys R great!

Would you know if I should look for liquid mucinex? He can't swallow anything?

M

liquid mucinex

Check with your pharmacist - there may be some available for children but there are a lot of over the counter medications that never make it to the shelf because of space constraints - doesn't mean they don't exist.

Also, may be possible to use the PEG for delivery of the medication.

For pain - has he been prescribed "magic mouthwash"?  It's a viscous lidocaine that coats the mouth, tongue, throat. 

You need that stuff.  Jim had BOT (not HPV related) and the magic mouthwas was great.

phrannie51

Chris and Marianne said:

mucus

thank you, you guys R great!

Would you know if I should look for liquid mucinex? He can't swallow anything?

M

Marianne....

You can crush pills and then disolve them in water and put into his tube that way....

As for the swallowing.....do try the L-Glutamine mixed with water and see if it stings less.....There are two parts to the swallowing pain...the deep tissue pain from the rads, and then there's the surface pain from thrush and mouth sores....L-gluatine will hit the surface pain.  It truly takes the sting out of plain water, it can be swallowed, and it promotes healing.  You can pick it up at the health food store.

I think Ingrid bought a sno cone machine during treatment (the kind you can get at Bathroom, Beds and Beyond....something like that)....so the ice is finely ground.

p

Ruben and Jude

thick mucous

My husband had tonsilar cancer, with one positive lymph node. His tonsilectomy was on March 22 and he started radiation and chemo (on the same day) April 12, 2013. He's completed 5 weeks of a seven week M-F radiation course, and 2 out of 3 rounds of chemo. So far, no thrush, and we're able to keep his secretions thin by making sure he has a minimum of 1500 - 2000 ml of distilled water daily, mostly thru his PEG tube. Also, I feel the L-glutamine ( 1 gm in the morning and 1 gm in the evening) has kept the thrush away (something I learned from this site)  I crush two tablets (between two spoons) and mix it with water. I understand it is unstable, so it should be used once mixed. After swishing it in his mouth, he'd swallow it. That was the method until last week. Now we've using the G-tube for nearly everything, including the water and L-glutamine.

I had a patient who was constantly nauseated because of her thicked secretions that were at the back of her throat.  She had a difficult time bringing it up, which caused nausea. The worse it got, the less she would swallow. Her MD ordered IV hydration, 1000 ml per day, along with Zofran 8 mg every 6 hours.  Shortly after she started the hydration, her secretions thinned out, the nausea was less and she was able to stop the Zofran altogether. She continued to have the IV hydration daily. SO, long story, I took that to heart when it came to my husband, and have made sure he ALWAYS has water on board. Not to say he doesn't struggle with thicker mucous, but I truly believe it's less than what most experience. Water and L-glutamine has been the ticket. He has not needed pain medication. He has a sore on the undersides of his tongue, and some severe tenderness everywhere else, but it's tolerable.  Today is the first day he is refusing to swallow water, but he is still making saliva, so he swallows that. He has promised to eat at least one meal a day, but the majority of his nourishment comes from his PEG tube. 

Once he started rads and chemo, we began "physical therapy" for his jaw, and swallowing. Everyday he inserts a small plastic bottle into his mouth to guage the tightness and to perform the 'PT'.  Usually the first insertion is tight, but after a couple 'sessions' it loosens up and he's able to open with no problem. He had a short bout of lip sores in the corners, but we were able to tackle that with Burt's Bee's lip balm/stick. 

I'm a nurse, and most of my experience is with cancer patients, so I've been a real PIA (pain the the @$$) to my husband. I'm MAKING him do every trick in the book. And again, most of them I've learned from here. This site is a God send. 

Best to you and your husband. There is light at the end of the tunnel.

Take care, God Bless.

Jude

 

Chris and Marianne

thnx

Thank you all again for your help. God's abundant blessing & healing to U all. Have a beautiful Memorial Day weekend. I'm sure I'll be back soon with more questions.

M & C

robswife87

Chris and Marianne said:

thnx

Thank you all again for your help. God's abundant blessing & healing to U all. Have a beautiful Memorial Day weekend. I'm sure I'll be back soon with more questions.

M & C

Superthread is your friend too

Along with all the great advice and help from our friends her, read the superthread at the top of main page.

This has tons and tons of great info and ideas to help.

Rob has tonsil cancer and i get great help from everyone here.

You will be in my prayers and thoughts while you go through this, along with everyone else here. These new friends have made this nightmare very bearable. When I get down this is where I come and believe me as the caregiver you will need all the help you can get. 

Come ask questions, come for friends, come for all the info you need. It will be here.

Sandy

NoDuck

Chris and Marianne said:

mucus

thank you, you guys R great!

Would you know if I should look for liquid mucinex? He can't swallow anything?

M

Robitussin

My hubby couldnt swallow mucinex either. Rad Oncologist had my hubby try Robitussin liquid -- the one that says its for mucous. It helped some but mostly it was the tissue, spitbucket, warm soda salt gargle every hour or so.  It was awful.  It gets better -- we promise.

Deb

hawk711

robswife87 said:

Superthread is your friend too

Along with all the great advice and help from our friends her, read the superthread at the top of main page.

This has tons and tons of great info and ideas to help.

Rob has tonsil cancer and i get great help from everyone here.

You will be in my prayers and thoughts while you go through this, along with everyone else here. These new friends have made this nightmare very bearable. When I get down this is where I come and believe me as the caregiver you will need all the help you can get. 

Come ask questions, come for friends, come for all the info you need. It will be here.

Sandy

What worked for me

Get a suction machine.  Dr can write prescription for it. Works great. The mucous will end in a few weeks too.  Trust me on this.  

Good luck. Steve

 

HelenBack

Papaya Enzyme tablets

My husband says they work great for him.

Good Luck

Chris and Marianne

fishmanpa said:

That old familiar song....

Hi Marianne,

Welcome to the forum. There are many here who had BOT HPV related SCC. My primary site was never found but they believe it was BOT and my body eradicated it. Unfortunately, not before it spread it's joy to my lymph nodes. 

I finished treatment April 24th so I'm a month out. It's taken that long to gain some ground but I'm stilll far from any sense of normalcy. Concerning the mucous and foam, I'm not sure what you mean by foam but I dealt with and still deal with thick stringy saliva. The only thing that cut through and helped was the water/baking soda/salt/glutamine rinse. I rinsed 4-6+ times a day and went through several boxes of tissues as well. Some here have used Mucinex (they have liquid) with some success. It took about 2-3 weeks to see an improvement. 

Believe me, I know what he's dealing with concerning pain when swallowing. I got through treatment without a PEG but had one put in the last day of treatment as I had lost too much weight and was dehydrated and unable to take in enough nourishment. Even after the PEG and getting 99% through the PEG, I continued to drink water. Chris HAS to continue to swallow! Even if he takes a sip an hour, he HAS to do this. You mentioned he's taking meds for thrush and Magic Mouthwash. Is he on pain meds? If not, ask the docs. There's no reason he shouldn't have his pain managed. I'm still on pain meds although the doses are less and further apart now. 

I know what you guys are dealing with and it's not pretty but hang in there. The next couple of weeks are going to be as intense or more than the last couple of weeks but it will get better. 

Positive thoughts and prayers

"T"

 

He has had the Magic mouthwash, liquid lydacane, Oxycodone and Fentanel(spelling?lol) patch. And 3 different Thrush meds. Nothing helps, in fact I think its worse.

cureitall66

hawk711 said:

What worked for me

Get a suction machine.  Dr can write prescription for it. Works great. The mucous will end in a few weeks too.  Trust me on this.  

Good luck. Steve

 

Suction Machine!

I'm with Steve.....get a suction machine! Have your doctor get it prescribed via visiting nurses or check your local health supplies place. This helped tremendously for my loved one! I don't know what we would have done without it. He also did the soda rinses and MM but they did not break down the mucus well enough for him. As Steve said, this will last only a few weeks, but if it is so unbearable for him, please see to get one of these and use it regularly.

BTW.....loved one was SCC BOT HPV16+ 

Hang in there...it will get better....just have to be patient and work through each day the best you can. You will notice changes every couple of weeks for the better.

 

~C