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Problem's with too much saliva. #197832
01-24-2019 01:56 PM
01-24-2019 01:56 PM
Joined: Apr 2017
Posts: 61
Valdosta,Ga.,USA
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WendyinGa Offline OP
Supporting Member (50+ posts)
WendyinGa  Offline OP
Supporting Member (50+ posts)
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Joined: Apr 2017
Posts: 61
Valdosta,Ga.,USA
Hi all, though I would leave a link to what got my through the excess saliva stage. I had so much it drove me insane. BabySmile S-502 Nasal Aspirator ---google it. It's a machine basically for well babies to clear the nasal cavity, but you know what else it can do....yep, suck up that excess saliva. Easy to clean and simple to use. You will not regret this purchase.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Re: Problem's with too much saliva. [Re: WendyinGa] #197898
02-24-2019 10:17 AM
02-24-2019 10:17 AM
Joined: Feb 2009
Posts: 22
missouri
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sandisays Offline
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sandisays  Offline
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Joined: Feb 2009
Posts: 22
missouri
Thank for the information. This has been an ongoing problem for some time.

Re: Problem's with too much saliva. [Re: WendyinGa] #198050
04-03-2019 10:02 AM
04-03-2019 10:02 AM
Joined: Mar 2014
Posts: 27
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BJT Offline
Contributing Member (25+ posts)
BJT  Offline
Contributing Member (25+ posts)
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Joined: Mar 2014
Posts: 27
I also currently have either too much saliva mucus like or dry mouth. Could it be mucusitus? I had an aweful case during and months after my treatments in which I needed a suction machine to remove it during the night. If that is the case your body should heal it.


Bruce
Re: Problem's with too much saliva. [Re: BJT] #198052
04-03-2019 12:01 PM
04-03-2019 12:01 PM
Joined: Jun 2007
Posts: 10,398
PA
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ChristineB Offline
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ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,398
PA
Mucusitus is painful mouth sores. Most of us who did rads with chemo endured very painful mouth sores that lasted for weeks. This usually does not cause patients to have extra saliva. Most patients will have a very thick ropey gunk that is difficult to get out of the mouth/throat for the first few weeks after finishing rads. Out of the blue usually 4-8 weeks after rads ends it stops and turns into the dry mouth phase where your tongue will stick to the roof of your mouth. This happens to 98% of all patients who went thru rads. I can count on one hand the patients Ive talked with who ended up with the extra saliva issue months after finishing rads. Out of the thousands of OC patients Ive been in touch with, theres been less than 5 who have had to deal with extra saliva. This has been especially difficult on those who first went thru heck with their treatments then have had extra saliva that creates issues with talking and eating. I discussed this with several top specialists who all agreed its very rare to have the extra saliva instead of the dry mouth issue. Ive had a couple of the docs tell me sometimes a few select patients will experience the opposite of what the majority do (dry mouth). Unfortunately nothing much can be done to change the extra saliva or dry mouth. Some have found Manuka Honey helpful with mouth sores. For dry mouth theres a few things that might be helpful. OC patients have reported success with using some over the counter mouth rinses, hard candy and gum with xylitol that helps some, and prescription medicine pilocarpine increases saliva but it also causes extra sweating as well.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Problem's with too much saliva. [Re: ChristineB] #198054
04-03-2019 12:46 PM
04-03-2019 12:46 PM
Joined: Feb 2018
Posts: 13
Rockville
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JonAngel Offline
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JonAngel  Offline
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Joined: Feb 2018
Posts: 13
Rockville
Hi, I haven't been here in a long time. Too long. I remember the ropey gunk quite well, they even provided a portable suction machine when I was home. I now have enough saliva during the day to affect my speech (most of the time). My mouth gets dry at night, but not extremely so. It also gets dry when I sing with the choir. I did not lose the saliva production on the left side of my mouth, only the right.

I notice that the excess saliva is greater when I take liquified food in addition to my Jevity. I think my body / mouth is saying "Thank was a neat trick... give me more to eat"

I should explain that I can swallow most food if I chew it enough first, and I can take most liquids by mouth, if I am careful. However I have had aspiration pneumonia several times, and I am "twice scared four times careful". Too careful I guess. My SLP said I was on the cusp about 3 months after radiation: I could either eat all the time and do my exercises as though I were training for the Olympics, or I would slip into G-tube dependency. So I am dependent.

There's more I could share of my own story, but I have one suggestion (if you haven't heard it already). Try drinking or rinsing with carbonated beverages. It really makes my mouth a more friendly environment.

best wishes,

Jon


SCC, HPV-related P16 Stage III T1N1M0
(prim. site rt base of tongue, 1.5 cm, 1 lymph node, nearly 3 cm)
Rad neck dissection 5/19/17 no probs
TORS 5/26/17 remove rt tonsil and divot at rt base of tongue
Arterial bleed at surgical site 5/31/17, 5 days intubated and sedated
Asp. pneumonia, hosp acquired pneumonia, DVTs
Tot 13 days in ICU
31 days targeted rad, until 9/21/17
CAT/CT 2/1/18 No evidence of disease
Swollen tongue and throat, diff to swallow
Still G-tube dep
Very grateful to be alive
Re: Problem's with too much saliva. [Re: JonAngel] #198301
05-07-2019 10:36 PM
05-07-2019 10:36 PM
Joined: May 2019
Posts: 17
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TongueCancerBeGone Offline
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TongueCancerBeGone  Offline
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Joined: May 2019
Posts: 17
Hi Jon -

I was struck by your comment that you are still using the feeding tube. I was told that the pain medicines will make it a lot easier to swallow, because they dull the pain enough to get food and liquids down. Were you using pain meds, but still in too much pain for foods and liquids? Thank you, Mark


Mark
Non-Smoker, HPV+ Squamous cell carcinoma tongue and in 1 lymph node neck, 4.8 centimeters. Surgically removed March 2019. 30 radiation treatments starting May 2019

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