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Head and neck cancer

Hello! My name is Bill and my cancer journey started almost 3 years ago. I was Diagnosed with Stage 4 Squamous cell carcinoma( HPV Positive) of the head and neck with primary in the tonsil and then metastasized to the lymph nodes on the right side of neck and a small spot on my lung. I started chemo in March 2017 and did 3 weeks cycles until January of 2018. Treatment was working great and my cancer had went away in my tonsil and my lung and only remained in my lymph nodes. . My Dr. at the time thought I would be a good candidate for Keytruda and decided to take me off chemo and try it. I did this for almost a year and the cancer did not respond, the tumor on the side of my neck just kept getting bigger and bigger, well my Dr. left so I was a given a new Dr. in the office and he decided the best course of treatment would be weekly chemo and radiation. I finished chemo today and have 2 radiation treatments left. I have gotten some pretty good side effects, thick and sticky saliva, I constantly spit up this stuff that is like glue and my breath smells like the sewage and everything I try and swallow taste the same. My question is has anyone had this same issue and what have you done to relieve this. 8 weeks ago I weighed 220lbs and today I weighed 178. I am open to try any suggestions that you might have.

Thank you and God Bless!!

  • Post #1
  • Thu Aug 8, 2019
Hi, I'm SRWells

Hi, Bill. I had Stage 4 Squamous cell carcinoma on my tongue and had 30 radiation treatments which concluded in May 2019. My side effects were horrible as well, including the thick saliva (sticky spit is what we call it) and bad breath. I used a mouth rinse of 1 quart water mixed with 1 tablespoon of salt and 1 tablespoon of baking soda. I’d rinse and gargle with this a few times a day. It helped with the bad breath and also seemed to relieve the pain in my mouth and throat. Have you tried that yet? The thick saliva has gotten better for me with time. I still have dry mouth, but my saliva is not nearly as thick or sticky. I have a feeding tube so I haven’t lost as much weight, but did lose 20 pounds (started at 138 down to 118). I hope this helps you!

Hang in there, it will get better. Bless you!

  • Post #2
  • Fri Aug 9, 2019
Hi, I'm CYNTHIA S.

Hi Bill, I’m so glad you sound good. Another old time mouthwash recipe is to gargle with peroxide (or brush your teeth) and spit it out. DO NOT swallow it. But that makes my mouth feel fresh and taste better. I lost weight right after my treatments, 26 lbs., but then gained back 16. It all took a while. Peace to you. Cindy

  • Post #3
  • Sat Aug 10, 2019
I'm Steven, and I'm a survivor of Oropharyngeal Cancer

Hey buddy, inwas diagnosed Febuary this year with Squamos Cell Carcinoma HPV16+ , no primary tumor was ever found but locally advanced to ywo cervical lymph nodes.
I had 2 rounds of Cisplatin amd the usuall 35 rounds of Intensity modulated radiotherapy.
My doctor has always been somewhat surprised at my recovery from radiation, i had the same 70Gy, lack of tumor made no difference to treatment, at week 5 of radiation i was really sore, couldnt even swallow spaghetti, weight was dropping of me and i was miserable, i was told to try a mouthwash called CAPHOSOL, which made a huge difference to me, withingva few days i felt better, i used it for around 3-4 weeks. Treatment ended for me 18th June, within a few weeks my taste was back and i had very little nucus problems. Caphosol is expensive, around 300 a box which last me 2 weeks but was worth every penny.
Good luck.
Oh one more thing, calories were a real problem for me, so i also used the Lidocaine mouthwash that you swallow to numb the throat, the biggest bang for the buck calorie wise that was also easy to swallow????, Tims of Spam, a tin is about 1100 calories and easy to eat.
For dry mouth i use a product called Salivea which tastes better then Biotene and has enzymes in it.

Good luck..

  • Post #4
  • Sun Aug 11, 2019

Thanks everyone, I am almost at one week post treatment and all my mouth side effects seem to be getting better and better everyday. Thank you to all for your suggestions on dealing with the dry mouth. Things are looking up and will only get better and better from here!!

  • Post #5
  • Thu Aug 15, 2019
Hi, I'm Debbie

That’s what is happening to me. Can somebody please help me please. I’m very scared and not even sure if I’m posting this correct

  • Post #6
  • Wed Oct 30, 2019
Hi, I'm Debbie

I’m done with chemotherapy and radiation. It’s been almost 3 months now and I’m still having throat issues. Sore throat, thick mucus, hard to swallow. Please tell me it’s a common side effect.

Thank you

  • Post #7
  • Wed Oct 30, 2019
Hi, I'm CHRIS A C.

I had stage 3 metastatic squamous cell carcinoma with an unknown primary. I was treated Surgry with 35 weeks of radiation and no chemo. The bloody throat did not go away until about four months after the last treatment. It was still difficult to swallow six months out. The thick mucus took about five months To go away. My ability to taste flavors took about a year. The only way to keep on your weight was to use the PEG tube and use 4 to 5 bottles of liquid food. I lost 50 pounds in four months. I could not take the recommended amount of liquid food as it made me nauseous. I never regained the use of my saliva glands. This all happened in 2005. I do hear the newer methods of radiation do not destroy the saliva glands. All in all it took about 18 months from surgery to return to an almost normal life.

  • Post #8
  • Sun Nov 3, 2019
Hi, I'm Debbie

Hi, my name is Debbie & not sure if I’m posting correctly, can somebody please let me know. I have nasal & lymphnode cancer. After chemo & radiation my petscan still showed a spot on my neck. Have to go for biopsy, to see what it is. I’m scared to death. Can somebody please tell me if it’s a common side effect. My email address is woohoogrant@yahoo.com. Can somebody let me know if I posted this correctly. Ty

  • Post #9
  • Mon Dec 2, 2019
Hi, I'm Mrs Lourens

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  • Post #10
  • Mon Dec 2, 2019

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