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Head and Neck Cancer

Skiffin16's picture
Posts: 8284
Joined: Sep 2009

Superthread (Read only) ~ contributed by Sweetblood22

Welcome new members! This is a read-only post that provides information about resources we, members of the head and neck cancer forum, found helpful as well as our answers to most frequently asked questions in our forum.

Please feel free to send Skiffin16 a private message (PM) if you have something you think should be included here.

Posts: 1
Joined: Apr 2016

Lurk no more

Hi - it is unfortunate to have to meet you all this way - I would it rather have been on the street or in a wonderful restaurant somewhere.  I have been lurking around reading many words of wisdom for a few weeks, trying different suggestions, reading great blogs (thank you Surfer).  My husband has just finished chemo/radiation for a stage IVa HPV+ cancer positive base of tongue tumor.  Thank goodness for the PA at his primary care office that she sent him for an ultrasound rather than home with a prescription for antibiotics.

hwt's picture
Posts: 2330
Joined: Jun 2012


Recovering from fall down basememt steps. 6 breaks  pelvis and spine , rehab then hospital for double pnemonia. Have had 24/7 at home care . Cutting back now . Walking again. A lot to handle 

Tonita's picture
Posts: 44
Joined: Feb 2016

This Tongue!!

Since my tongue surgery (tumor removal) I think everything is going ok.  I'm eating more things and even took some pills with water the last two day.  The only problem I'm having right now is that because of the way my tongue is now, it's misaligned so it's driving me crazy.  I can't stop sucking on the right side or biting down on part of it.


If anyone else has had this problem, how did you deal with it?  Did it ever get better.  It's sort of involuntary I guess but it can't be good.


mokus's picture
Posts: 54
Joined: Jul 2015

more update and question

I am doing a lot better, getting strength back and becoming more active.  My neck is still numb from the dissection, scar still very visable.  Next ENT appointment on May 10.  Have been having a lot of issues with stomach which I suspect are related to the hole they carved into me for the peg tube which has been out about 3 months now.  I pretty much stay on my back or in a chair most of the day because my stomach always feels like it is cramping badly when I am oon my feet.  I always walk a bit hunched over now.  Possibly some digestive issues and issuse with poop.  Does anyone else post p

wmc's picture
Posts: 1637
Joined: Jan 2014

Your lungs can smell odors very much like your nose.

This is more directed to the ones with Having a Laryngectomy, referred to as Larys.  As a neck breather we really can't smell, and we can't hold our breath. We also have to swallow much different because we have no larynx where all the muscles that help you swallow hook to.

Your lungs can smell odors very much like your nose. Now I know many Lary's can still smell by keeping the lips closed and yawn. This will draw in a small amount of air through the nose. Also, if the wind is just right we can smell as well.

Posts: 161
Joined: Oct 2015

Another scan on Monday

This will be the second scan since my husband completed treatment for tongue cancer in January. He got the NED at his first scan on February 23rd. 

My husband is feeling great. Just dealing with limited saliva, although it has improved in the past few weeks, and some spicy and sweet foods (namely chocolate) don't really do it for him anymore. But other than that, things are a new normal.

Posts: 9
Joined: Apr 2016

Radiation without feeding tube

Hello all,

My radiologist at Sloan-Kettering is not recommending a feeding tube for my 30 rounds of tongue and neck treatment. Yet, I see so many here have either needed, or were advised to have one put in. Who went without it and can you tell me your experiences? I'm happy with the recommendation but worried about trouble eating.

jcortney's picture
Posts: 500
Joined: Sep 2012


Sometimes you hear exactly what you need to hear, from out of nowhere.

I was leaving Chemo today and was getting on the elevator on the chemo floor when a nice older woman (I'm 67 so....) got on after me.  I was feeling pretty down in the dumps after the failure of the PD-1, all the rounds of chemo, all the rads, all the side effects and all tumors.  I was so down that last night I sat and wrote last letters to my wife and just a few close friends and entrusted them to my attorney for delivery.

Posts: 9
Joined: Apr 2016

New Tongue Cancer Patient Here

Hello all,

I was diagnosed with SCC on February 23, 2016. One time light smoker, having quit over 25 years ago. No HPV. Checked myself into Memorial Sloan-Kettering Cancer Center in New York, immediately, where I had surgery and neck dissection. One node out of 22 showed cancer. I have recovered well from surgery with a slight speech impediment.

I begin rads/chemo in about two weeks. Reading these posts, as well as, posts across the internet, has given me good insight as to what I can expect. I am not looking forward to it. I will check in with my progress as I go.


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