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#151283 - 06/26/12 05:37 PM Ropey/Thick saliva? mucositis? HOW LONG?  
Joined: Feb 2012
Posts: 117
John of arc Offline
Senior Member (100+ posts)
John of arc  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 117
New York
Hello. I'm still suffering from a bit of mucositis but I'm confused.
Are ropey salvia and mucositis related? Is ropey salvia a symptom of mucositis?
And of all the posts I've read almost no one has said how long the ropey/thick salvia lasts. I know everyone is different but mentioning your own time frame can really give someone hope.
I NEED to go back to work the 25th of July. If I can't talk I can't go back. If I can't go back the 25th of July I won't have a job to go back to. And if that happens I know I won't want to get up ever again. I love my job.
So please, how long before the ropey salvia cleared up for you? Is it related to mucositis?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
#151284 - 06/26/12 05:54 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
John of Arc

It is confusing on the forum when the majority of people confuse mucositis with excess mucous and ropey saliva so they post about one when they really mean the other. I did it at first. Now to your questions.
1
Quote:
Are ropey salvia and mucositis related?
Depends upon your definition of "related". Both ropey thick saliva and mucositis are caused by the same thing: radiation damage so in that broad general sense, they are related. But related in terms of causality, no. Mucositis means mouth sores caused by radiation damage to the mucous tissues of the mouth and does not cause the ropey saliva which is caused by radiation damage to the salivary glands. Neither one causes the other.
2
Quote:
Is ropey salvia a symptom of mucositis?
No, Ropey saliva is not a symptom of mucositis any more than fatigue or nausea or any of the other "related" damages caused by radiation are symptoms of mucositis.
3.
Quote:
how long before the ropey salvia cleared up for you?

My first time, the ropey saliva cleared up in a month.
The second time, with the salvage surgery and radiation in excess of the maximum, about 3 months during which I used a suction machine daily and at night it was so thick.

Remember, you are young, I was old. Your times should be better. Worse case, practice spitting now into one of the those large coffee carry mugs, and you will be able to talk even with the saliva. Or at least I was able to
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#151285 - 06/26/12 05:59 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Feb 2012
Posts: 117
John of arc Offline
Senior Member (100+ posts)
John of arc  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 117
New York
Did the ropey salvia make it difficult for you to speak?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
#151289 - 06/26/12 06:32 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
Yes, the ropey saliva did make it more difficult to speak but not impossible. I used cans of seltzer water (some people prefer club soda which is seltzer water with potassium salt or other salt added - but don't confuse them with tonic water which burns due to the quinine)to cut thru the thickness, then I would rinse and spit out enough to talk. I carried a large coffee travel mug to spit into and kept a larger cylrindical cooler in my office to empty the mug into until I could dump the whole mess down a toilet (too thick for the sinks).
Consider renting a suction machine, its usually covered by insurance, which sucks the saliva right out. I did not do that until the second time but it was very effective.
You have over a month before July 25th, it will get better.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#151290 - 06/26/12 06:47 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
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davidcpa  Offline
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Joined: Sep 2006
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Gulfport, Florida
My thick stuff lasted about 2 weeks but seemed like much longer. I carried a small styrofoam cup IN MY POCKET and spit in it whenever I needed to which was constantly. At night I would wake up with a mouth full and would run to the B/R sink. Sometimes it triggered a gag reflex and I would vomit. It will go away but will leave dry mouth in it's place so on one hand enjoy the excess now because when the DM takes over you will be carryinf a water bottle instead of a cup.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#151291 - 06/26/12 06:50 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Feb 2012
Posts: 117
John of arc Offline
Senior Member (100+ posts)
John of arc  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 117
New York
See carrying a water bottle is normal for me. That won't bother me a bit


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
#151294 - 06/26/12 07:40 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
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Joined: Sep 2006
Posts: 8,311
Gulfport, Florida
Then you already have that going for you! I "learned" the hard way to keep many extra bottles in my car because just about everytime I took on into a store I left it somewhere and didn't usually realize it until I was driving away and believe me (this is the hard way) there is no way I could make it 1 mile without needing a sip.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#151296 - 06/26/12 08:25 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Feb 2012
Posts: 117
John of arc Offline
Senior Member (100+ posts)
John of arc  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 117
New York
Yeah. I carry a nalgene bottle with me everywhere and have for years. It holds a lot of water and is hard to forget.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
#151303 - 06/26/12 10:45 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Dec 2010
Posts: 289
AnneO Offline
Gold Member (200+ posts)
AnneO  Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 289
Kansas
John,
You are correct that we are all so different. I did not have the ropey thick saliva, although I had an annoying drainage from somewhere--maybe the parotids--that went on so long I was not sure exactly when it ended. It just seemed a part of me. I think it was nearly a year after finishing rads & chemo. BUT, I did go back to work in the time frame you are mentioning, and I use my voice a lot in school. I was lucky in that I had teachers donating me sick days so I could take some time off if I needed it. I couldn't have done any job, but I'm an old lady compared to you! I think you're time frame is reasonable provided you can find a way to rest if you need it, even if it means you don't do anything in the evenings for a while.
Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015
#151344 - 06/27/12 04:13 PM Re: Ropey/Thick saliva? mucositis? HOW LONG? [Re: John of arc]  
Joined: Feb 2012
Posts: 117
John of arc Offline
Senior Member (100+ posts)
John of arc  Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 117
New York
I'm just so scared. If I don't go back by then I will not have a job to go back to. And then my life gets turned upside down again and I lose even more.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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