| Joined: Jan 2019 Posts: 1 Member | OP Member 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 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | 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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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
| | | | Joined: Mar 2019 Posts: 77 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2019 Posts: 77 | Hello Future focused,
7 weeks is 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 while. 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.
Depend on your Radiation Oncologist And your dietician and your swallow technician. They know your specific case best!!
Crystal | | |
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