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#199360 11-01-2019 05:34 AM
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I have finished radiotheraphy treatment. Whoop whoop.
For the last few days, my saliva is foamy. I think it's because I swallow it before being able to clear it, but when I have a drink (whether orally or through the G-tube) my saliva foams up at the back of my throat making it hard to clear. I have huge sores at the back of my throat making swalllowing difficult.
I am using the baking soda/salt water rinse but I haven't been able to do it 4 times a day on top of the different physios I'm doing, mouth excercises, sleeping, eating, meds and obviously the 5 hour trips to and from hospital.

At night I can feel the mucus rattle in my stomach (grim) and last night I put some water through my g-tube and 5 minutes later I threw up loads of mucus with the water. It was awful.

During the day, when it builds up, I sound like I'm snoring and all I can do is swallow this foamy mass. I regularly gargle and rinse my mouth out. Any ideas?

Last edited by Dizz_zzey; 11-01-2019 05:36 AM.

F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #199361 11-01-2019 08:24 AM
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Good job, finishing your radiation treatment!

The mucous probably won’t last very long before the dry mouth sets I . Do what you can for now, it sounds like you’re doing the right things.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
gmcraft #199362 11-01-2019 08:45 AM
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I'm not sure which will be worse. Foamy, snoring sore mouth, or the dry mouth stage. Any recommendations on how to maintain moisture? or is it a case of just for me to keep sipping throughout the day?


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #199364 11-02-2019 06:16 AM
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The dry mouth is, I believe, bearable. You see in the hospital head and neck cancer patients carrying a bottle of water around with them. You will need to pay e tea attention to your dental hygiene. The lack of saliva causes tooth decay. So you’ll need to clean your teeth well, use the Waterpik to floss every time you eat, and use your fluoride trays every night and consider switching to a toothpaste like PreviDent 5000 Plus which will strengthen the enamel in your teeth. Unfortunately, this is all part of the new normal. Of course, it depends on how much damage radiation has done to your salivary glands.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Dizz_zzey #199365 11-02-2019 07:28 AM
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YEAH DIZ!!!!

Congrats on finishing your treatments!!!

Let the healing begin!!!


PS... The dry mouth is horrible, its something we all have been thru. Time makes everything better. At least Id like to think so, but it really could be we just learn to accept it and target other things to watch? When just finishing rads, almost everyone has the thick gunky, ropey mucous thats difficult to get out especially challenging when its in the back of the throat. That usually lasts for 4-8/9 weeks post rads then it stops and within 24 hours later comes the driest dry mouth ever!!! Thats the dry mouth phase most of us are familiar with. Yes, the dry mouth when just finishing rads is an annoyance, uncomfortable and a bit of a problem for some patients but its not as bothersome as what most of us encountered 4-9 weeks post rads. You did GREAT going thru rads!!! Im hoping your recovery phase will be similar being fairly smooth getting back to as close to your regular self as possible. Luckily for you, being young gives you a big advantage for faster healing.

Yes, drinking lots of water (48-64 oz) helps. Continuing to take in 2500+ calories (and the 48-64 oz of water) every single day will help you to recover quicker by alleviating your dry mouth and to thin the mucous. Some patients get a portable suction machine to use at home from a medical supply company. In the US it requires a doctors prescription to get one. Every doctor appointment, ask the nurses to suction out any of the thick gunky mucous.

Over the counter (in the US) to help dry mouth like (in the US) reditabs that stick to the top of your mouth and it helps keep your mouth moisturized. Doing frequent rinses (4+ times a day) using 1 cup warm water, 2 tsp baking soda and 2 tsp salt mixed together swishing it around your mouth and gargling for about a minute before spitting it out, doing at least 3 swish/gargles at a time should help too. You can also try running a humidifier at night, having a water bottle within reach at all times so you can take a couple sips during the night, sleeping with your head elevated... sort of like laying on an incline or slant may help. Over the counter dry mouth rinses have mixed results from those here who have used them. I didnt find much help from it so stopped using it.

Hope this helps you!!!


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
Dizz_zzey #199374 11-03-2019 05:21 PM
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Congratulations on finishing treatment!!! My husband keeps bottled water with him and does lots of swish & spit actions.

Sending good healing vibes your way!


Spouse of patient 7 weeks post radiation as of 9/30/19
ArdenDD #199388 11-04-2019 06:00 PM
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My dad bought some plastic squeeze bottles intended for cake decorating, and he keeps one of those by his bedside. Since he can't really feel his lip, he gets water all over himself if he tries to drink while laying down. This helps him squirt the water into his mouth better. The little bottle is kind of like a squeezy ketchup bottle you'd find at a street vendor, but with a little cap.

Last edited by Vicky1; 11-04-2019 06:01 PM.

Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
Dizz_zzey #199414 11-10-2019 11:25 PM
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Posts: 62
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Congratulations Dizz!!! That’s great. Sorry to hear about the mucous situation. Maybe the moister you keep it the easier it will be to control or expectorate more often before it builds up. Looks like you’ve got excellent guidance as usual. What a relief that the radiation is past tense. Hope this next stage of your recovery is not too draining for you. Commendable how you keep posting to help others no matter what your going through. Your awesome girl. Keep up the fight. Wishing you nothing but rainbows.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Dizz_zzey #199425 11-13-2019 01:39 PM
Joined: Mar 2018
Posts: 70
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Hi Dizz,
My Radiation Oncologist nurse set me up with a prescription of Neutrasal, which is a dry powder you mix with water, and it's is supposed to stimulate saliva. There are other brands also, ask about calcium phosphate rinse powder.
I wouldn't say that it worked on demand, but I felt that it helped slowly but surely, and kind of gave my mouth a clean feel after rinsing with it.
Somehow they got it fully covered under my prescription plan in New York.
All the best,
CM57

Last edited by CM57; 11-13-2019 01:51 PM. Reason: Spelling correction of Neutrasal

Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
Vicky1 #199427 11-13-2019 02:23 PM
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Posts: 237
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Hey Vicky,

The squeezy bottle is a great idea! Sometimes I find I just need the moisture but not a drink. I'll invest in a couple of bottles. Thank you!


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
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