Has anyone had Nasophartngeal squamous cancer?

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Has anyone had Nasophartngeal squamous cancer?

by TReese on Mon Mar 06, 2017 11:01 PM

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At the age of 12 i was diagnosis with this cancer. I been cancer free for 20 years now. Years down the line my speech started to change and my neck got skinny. I have problems eating for so i was placed with a peg, but i can swallow liquids but not food. It's very hard for people to understand me at times when i talk to them. some people jump to conculsion and say I'm deaf do i speal sign language. That hurts my feelings at times. Does anyone goes through these problems or know of any help?

RE: Has anyone had Nasophartngeal squamous cancer?

by Sdurnell on Tue Mar 07, 2017 06:44 AM

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TReese,

Did you have radiation?  It's common for H&N patients to have later radiation effects.  I am six years out and have noticed recently that my voice quality is diminishing, and doctors say it's the rads doing it.  ("The gift that keeps on giving," we call it here.)

I'm wondering whether you have seen a speech therapist for either your swallowing or voice.  Sometimes they can help both.  Your ENT should be able to recommend someone who can evaluate you for these issues.

Wishing you all the best,

Susan

RE: Has anyone had Nasophartngeal squamous cancer?

by TReese on Tue Mar 07, 2017 01:56 PM

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Good morning Susan,

Yes I had radiation. Yes it has done a lot of damage . I do speech therapy. And next week I go see the ENT.

It's so hard for me. But I'm happy to be a survivor. 

Thank you,

Teyonnie

RE: Has anyone had Nasophartngeal squamous cancer?

by dkray on Sun May 28, 2017 09:50 PM

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My husband has been diagnosed with squamous cell carcinoma of the sinus an surgery/radiation is scheduled for mid-June. You didn't mention your particular cancer - may I ask what it was?

RE: Has anyone had Nasophartngeal squamous cancer?

by paularae on Thu Jun 01, 2017 03:47 PM

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I am a seven year survivor of NPC. I have had the normal dry mouth from the beginning, but this year, I have peripheral neuropathy in my fingers and toes. My neck muscles are now tightening up and causing me dizziness. I had chemo and radiation. I have asked the doctors if this is late stage side effects. They have said that it is to long from my treatment, but hearing everyone, it has to be from my treatment. So far my speach and swollowing are fine, but I have to drink down foods.  I keep telling myself that I should be happy to be alive.

Paula

RE: Has anyone had Nasophartngeal squamous cancer?

by Sdurnell on Mon Jun 05, 2017 02:05 AM

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On Jun 01, 2017 3:47 PM paularae wrote:

I am a seven year survivor of NPC. I have had the normal dry mouth from the beginning, but this year, I have peripheral neuropathy in my fingers and toes. My neck muscles are now tightening up and causing me dizziness. I had chemo and radiation. I have asked the doctors if this is late stage side effects. They have said that it is to long from my treatment, but hearing everyone, it has to be from my treatment. So far my speach and swollowing are fine, but I have to drink down foods.  I keep telling myself that I should be happy to be alive.

Paula

Paula,

I am 6.5 years out, and am starting to experience what my doctors call "late-term radiation effects."  My voice quality is decreasing, giving me a more gravely voice.  And it's not as loud either, not so good when combined with my husbands diminishing hearing!  So anyway, I know that we can suffer from effects that don't show up until after we've been declared cured.  

But you are so right--life is good!

Susan

RE: Has anyone had Nasophartngeal squamous cancer?

by dkray on Thu Jul 06, 2017 01:20 AM

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He made it through 13 hours of surgery, is now in the recoverystage. Everything is progressing well, just waiting for the eye sweling to dissipate to have the form made for the radiation. Twice a day five days a week for five weeks. recover fromthat then the oculist does his thing. Question for you on moisturizer during radiation. He can only do it at night as he needs 4 hours prior to treatment and that is scheduled for 8 am and 3 pm so ight time is the only time he can do it. Any suggestions on the best one to use? He's a blond with fair skin so this will be an issue.

RE: Has anyone had Nasophartngeal squamous cancer?

by paularae on Thu Jul 06, 2017 02:35 PM

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I used silvadine lotion. It is used for burn patients. Has it been recommened that he get a peg tube inserted? I had this put in before my raditation and it saved my life because my throat was too sore to eat. I have heard others have drinked aloe vera juice. It is good to keep swollowing to keep those muscles working. I also got home health care who got my liquid nutrition and a food pump covered by insurance. A nutritionist may be able to help with that also.

RE: Has anyone had Nasophartngeal squamous cancer?

by dkray on Thu Jul 06, 2017 06:11 PM

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Thanks - is it an Rx or over the counter?

RE: Has anyone had Nasophartngeal squamous cancer?

by paularae on Thu Jul 06, 2017 07:54 PM

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It is a prescription lotion. I used it every day and I had more than i could use. The radiation nurses gave me lotions that did not help and even caused me irritation. I was told by my freind who was a nurse to get silvadine lotion. Once I started to use it, my neck healed very quickly.

Paula

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