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Excessive Mucus #197768
01-09-2019 10:04 AM
01-09-2019 10:04 AM
Joined: Jan 2019
Posts: 1
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Future Focused Offline OP
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Future Focused  Offline OP
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Joined: Jan 2019
Posts: 1
I was diagnosed with stage 2 or 3 tongue cancer in August and treatment started October 11, 2018. I've had 7 weeks of treatments (weekdays for radiation & once a week for Cisplatin chemotherapy). I'm in my 7th week of recovery. I have a feed tube in my stomach that I'm attempting to ween off of. I'm down from 4 to 2 containers of Nutren 2.0 daily (500 calories each). I'm getting my other 1000 calories through Carnation Instant Breakfast, Boost and Egg Nog with ginger ale. I've tried some real foods with minimal success so far (fried eggs do ok; struggle through some Campbell Chunky soups).

In general it's going pretty well except for the excessive mucus I'm experiencing. It's pretty much continuous day and night. Sleep is a nightmare. The mucus mixes with whatever I'm attempting to eat or drink and makes it extra difficult to swallow. My throat hurts and feels like it's constricted making it harder to swallow. I have fits of coughing whenever I eat or drink. I also have them at nighttime in bed. I've attempted to sit up sleeping and just about every possible angle. Nothing stops the mucus. MY QUESTION: Have others experienced this kind of mucus this far into the recovery cycle?

My radiation doctor says that I don't have thrush although I was initially diagnosed and treated for Candida fungus in my esophagus. That's actually how they found my tongue cancer: They did a gastroscopy/EGD on my esophagus because of excessive mucus and violent coughing back in August. They found the Candida fungus in the esophagus. However, when pulling out the scope, he noticed the mass on my tongue and took pictures of it which was identified as tongue cancer (after a biopsy). Thrush and Candida fungus may be the same thing. They have treated me 3 times with Fluconazole. It seems to help for the first few days and then the mucus returns. My doctor doesn't think that's the problem anymore. The mucus randomly changes from dark brown to yellow to white. It's driving me nuts

Re: Excessive Mucus [Re: Future Focused] #197770
01-09-2019 12:19 PM
01-09-2019 12:19 PM
Joined: Oct 2012
Posts: 1,079
Toronto, Canada
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gmcraft Offline

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gmcraft  Offline

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Joined: Oct 2012
Posts: 1,079
Toronto, Canada
Welcome to the forum. I’m glad that you are on the road to recovery although the mucus sounds really annoying.

It is one of the side effects of radiation. As far as I know, the ropey mucus will stop at some point and will be replaced by dry mouth. A lot of patients carry around a spit cup. My husband did that. In the meantime, you can try using a Waterpik on the lowest setting with the tongue scraper attachment. Also, put in a capful of the magic mouthwash and remember to use warm water. It’s very effective for cleaning out the gunk (though it doesn’t stop it). John used to say it was the best purchase we had ever made.

Seven weeks out is still early as full recovery can take up to two years. Swallow and drink slowly as you do not want any food particles or liquids to go into the air pipe. That may be the reason for the coughing you get.

Do let us know how you’re getting on and others on the forum may we’ll have more to add to my two cents.


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.
Re: Excessive Mucus [Re: Future Focused] #197803
01-16-2019 07:00 PM
01-16-2019 07:00 PM
Joined: Jul 2012
Posts: 3,178
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,178
NYC
Future Focused,

They do have medication to help with excessive mucus, but it may be inappropriate at this time with a recurrence, and has its own side effects, but I’m not sure in your case. There is a part of recovery where you do have excess mucus, then dry mouth. For some reason fewer patients continue with excessive mucus.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Excessive Mucus [Re: Future Focused] #198015
03-26-2019 11:18 AM
03-26-2019 11:18 AM
Joined: Mar 2019
Posts: 49
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Crystal J Offline
Contributing Member (25+ posts)
Crystal J  Offline
Contributing Member (25+ posts)
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Joined: Mar 2019
Posts: 49
Hello Future focused,

7 weeks is WAY too early to be talking about Recovery. You are technically still Cooking. Did you have IMRT, or Proton therapy?
And did you have Chemo with it?

I am 11 months out from radiation-- I had VMAT, Volumetric modulated Arc therapy, which is another form of IMRT.

The excessive phlegm will co ntinue for a long time (it has for me!!). You have to take measures that work for you... And the Sore throat?? I still have it almost 1 year later.
Yes, the sore t hroat awakens me during the night too. I sit up, and drink ice water..

If your swallowing ability is intact and Normal, just advance your diet slowly, as you feel comfortable with.
But i mportantly ,--- Swallow, Swallow & Swallow! Don't stop swallowing because you can lose the ability to.. Keep those muscles working.

Your speech therapist/ Swallow technician should give you tips and advice, as to what you are allowed to eat.

My case does not apply here, because my huge tumor forever damaged/ altered my Swallow ability. It disabled my swallow, before my first reconstruction surgery.
Surgery altered things more, then radiation finished it off. No lie. So, I cannot eat. No ability to. My swallow tech told me to Never put solid food in my mouth.

Depend on your Radiation Oncologist ( I love my RO !!) And your dietician and your swallow technician.
They know your specific case best!!

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheostomy, Mandibullectomy, Parascapular Free Flap reconstruction.
Cachexia - 64-76 lbs
10/2017 Relapse, Recurrence to tongue, Mets to lip, All Positive Margins.
12/2017 Recurrence BOT deep Positive Margins. Re-excision lip, deep PM
2/2018-4/2018 VMAT, a type of IMRT

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