Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

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Regular Contributor

Re: recent diagnosis of left tonsil cancer

Hi Mate

 

You should weigh this stuff up and make your own judgement call, but here's my comment on each of the areas of concern.

 

Side Effects Laundry-List

Mate, three years later and still have an array of problems, some of which could have been avoidable with better advice (the thyroid is a big example).  I'll give you a quick run-down on the big picture as it was for me, based on the stage of treatment / recovery.  Note the first 3-5 weeks of treatment are a breeze, only issue is losing sense of taste after first chemo.  Read the Head & Neck Side Effects thread for a full run-down from me and a bunch of other folks with similar disease profiles.
EARLY (During Treatment): toward end of treatment, it's neck burns, dry mouth, pain, mucositis.  The mucositis for me was the worst, combined with rancid-taste dysgeusia.  

MID (First 6mth After Treatment):  Side effects were worse AFTER treatment, the first fortnight was woeful.  Mucositis was the biggest problem, but dry mouth, vomiting, all that stuff, are at their most intense straight after treatment finishes, and don't be impatient, it will be a slow gradual decline.

LATE (1year and beyond):  Thyroid is a real shit, radiation induced thyroid impairment - but even approaching 3 years out still have issues with mucus, dry mouth, coughing.  Every day there's a wretching and some phlegm to bring up.  But yeah, get your thyroid tested in the first year out so you don't pile on weight in years 2 & 3.

 

PEG Insertion

Buddy, my oncologist said 'its better to have it and not need it, than to need it and not have it'.
It's a surgery, considered minor, but like any surgery, there are side effects.  People trivialise plastic surgery, but the simple fact is, people die during minor procedures, even kids with stuff like circumcision, it's just massively rare.  I got a post-surgical fever/infection, but shook it off pretty quickly.  The thing is, without the PEG tube, I would have been utterly fucked (sorry).  Rancid taste dysgeusia means everything that goes into your mouth, even water, tastes like maggotty possum.  Willpower doesn't play a part, your body just won't over-ride the survival instinct and allow you to swallow what feels like poison.  It's apparently an uncommon side effect, but if you get it, you're screwed.  If your oncologist says you could be slated for quick insertion during treatment .. well, you can roll with that.  They can also intubate by nose, apparantly, but it's awkward and harder to use.  You could follow your oncologists advice, but if he's left the choice up to you, I'd seriously consider getting the PEG inserted, and risks be damned.  I relied on it for survival for 2 months.

 

Fear & State of Mind

Cancer is a shit show, mate.  All you can do is get through it.  My best piece of advice is really simple - distract yourself.  Whatever it is that is fun or diverting for you - super-indulge in it.  I don't care if it's reading kid's Scooby Doo story-books, professional burping, playstation zombie games, or transcendental meditation .. just distract yourself.  You need to tick off the time and get through the next few months.  And after that, you need to take a deep breath and get through another few months, and then, day by day, things start getting better.  You can even go whole weeks without even thinking about cancer, if you're lucky.  Anyway, distract yourself much in the same way you would a puppy who's just had desexing surgery and has to wear one of those cones around his neck & you need to distract the poor little bugger so he doesn't scratch at his stitches.  Be protective of your mental health, try not to obsess too much about cancer and your side effects, treat it as if you're doing a stint in the military, or in a prison, and just get through.

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Contributor

Re: recent diagnosis of left tonsil cancer

thanks again Capt !!  you sure have a way with words that i can relate to...i will talk to the radiologist on wed about the PEG and hope the thyroid makes it ok...i have a number of lymph's that they will shoot next to my carodit's and major veins...dont know how they will pull that off..i imagine they are quite accurate...none of them are swelled ... 

 

i will look back on the site as you mentioned and see what i come up with to print and then follow a plan....i ordered a product here in states called "muscle milk pro" with 40 g protein per drink...and will be taking this for protein while i get treatment....

 

appreciate your time and interest and if anything else comes to mind i will be here and glad to hear from you again.....

 

thank you and take care,

Bill

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Re: recent diagnosis of left tonsil cancer

HI guys,

 

Absolutely couldn't agree more with what Simon has said about side effects...all the way.  I am just now having issues with my thyroid and will be started medication very soon.  I have tried to manage it with my naturopath but my numbers are just increasing and I moved from a preclinical hypothyroidism to fully blown hypothyroidism.  Unfortunately medication is the only option.

 

With the mental well being the mind can really go to far away places with a cancer diagnosis.  I think th key is despite the diagnosis try to look at the positives of this.  HN cancer is treatable and is curable and has a very good prognosis.  Remember you are being offered treatement with a curative intent and in the cancer game that is wonderful news!  Don't over read things on the internet you will give your thoughts to too many things, just go with the flow of treatment some things you may not experience.  However, I would say the things that have been mentioned on this thread are pretty much stock standard side effects but everyone of us, to a varying degree.  Everyone of us went into this with a varying and diverse medical history, state of health prior to diagnosis and ideas and preferences about life and health in general.  All of that will make your journey yours and not mine or anyone else's.   

 

For me I feel empowered by doing things that are in my hand.  Getting cancer and having to go through the treatement and so on ARE NOT IN MY HAND.  However, looking after myself, eating right, excercising, doing things I enjoy, teaching, seeing my naturopath and keeping as healthy as I can IS in my hand.  Empower yourself with things that are in your hand and don't worry too much about the things that aren't in your hand.  I'm a teacher so returning to teaching was a wonderful milestone for me after coming through this.  Throughout my treatment I was actually studying and I found a great deal of normality despite the side effects to sit down and do something normal in my life.  I tried to keep my life as normal as possible, pulling myself up from the misery of treatment and pushing forward with things that gave me hope.  Family was a big thing....my parents are in their mid to late 70's and seeing me go through all this was horrendous for them.  This whole experience has changed the way I see life now, and it has been I can truly say a positive thing.  I appreciate the small things in life now, cooking for family and spending quality time with each other, teaching my students helping them to reach their goals and looking back and saying thank God I can eat, drink, talk and smile again.  Life works in mysterious ways and a lot of it we don't understand but I truly believe everything happens for a reason.

 

So, Bill keep your head up get yourself physically, mentally and spiritually prepared for this as only you can push through this, no one can do it for you.

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Re: recent diagnosis of left tonsil cancer

And Simon....what's this celebrity status I hear?  Did I miss something?

 

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Re: recent diagnosis of left tonsil cancer

Yeah ... ahh ... well .. that's me:  https://www.youtube.com/watch?v=u5yD6nvniHY

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Re: recent diagnosis of left tonsil cancer

Wow to all of you brave people I am so thankful I found this page.

Background my brand new 51yo hubby was diagnosed in Nov 2018 with cancer in his lymph nodes, only found when our beautiful English Staffy head butted him in the neck and the sweeping didn’t go away after 2 weeks. Off to the doc I tell hubby. Doc gets him to do an ultrasound the  neck scan. Fast forward 4 hours later I am called home from work to be told the scan shows metastatic squamous cell carcinoma 

so biopsy 3 days later same diagnosis

specialist tells us they think the primary maybe in his tonsil, so Xmas eve last year they take his tonsils and base of toungue.

Febuary starts 7 weeks radiation and 6weeks of once per week chemo

My brave new hubby handles everything quite well but the last two weeks were horrendous the pain he endured was excruciating to watch

He had a peg tube but had it taken out post 3 weeks after treatment as it drove him mad

can eat hurts at times tastes like shit apparently 

I am so thankful to read this thread as I must admit it post 6-7 weeks now and I had started to worry as twice he has fainted (endone maybe) and lately his neck hurts again and I was starting to get Terri my worried as he was 

I have just shown him this thread and he is feeling positive again so thank you and god bless you all xxx Belle

 

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Re: recent diagnosis of left tonsil cancer

Hi April

thanks for your support.  Yes, it is a tough position to be in...an unknown path of life you cant prepare for...i will take your words to heart and try to muster up the strength...i feel my age is a factor...70...i am in great shape but that will work against me since i have lean body mass and cant afford to loose weight...i weigh 155lbs and 5'10" but as a runner forever i lack the fat needed here i do believe..and i am told i cannot run now and stay lean...i must put on weight...well, i dont eat calories and carbs routinely...so i am now trying to get that down my throat to get ready for treatment in the next week or 2 when they said i will start...so my biggest dilemma is the PEG...the Oncologist says wait he can have it done later but most that went thru this said without it you can be in worse jam when your throat shuts down and its a life saver etc......

 

so, as you can see i am trying to make the right decisions now before i get into it and regret listening to only what i want to hear...i need to be ready for battle and listen to it all...good and bad......

 

i guess this is my big life marathon so to speak and i am just trying to see what i can do to make it successful without too much drama...

 

all posts have help me in one way or another to build knowledge beyond more than i could have ever hoped for and hope i am around to pay back to others what all you have gone out of your way to provide me in my journey

 

thank you

BIll

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

I am a76 year young woman in good health and was diagnosed with tonsil cancer  October of last year. There was a 1.8 centimeter tomorrow in my right tonsil .  In November I had a radical neck dissection removing tonsils and parts of tongue base and surrounding areas. Out of 20 lymph nodes removed from the right side of my neck,  2 contained cancer.   I was being treated at UCLA and it was recommended that I immediately follow up with radiation.

the pain of recovery from the surgery was so severe and debilitating that I was in fear of more of the same from radiation.  I turned it down and my family was very against me not having this follow up treatment to insure that it would not return.  I researched Proton therapy which is a form of radiation with less side effects.  The bottom line is that although there are 2 Proton Centers here in Southern California, I opted for one on the east coast under the auspices of Dr. Nancy Lee of Sloan Kettering in New York.  Although the treatment was uncomfortable and painful my side effects seem to be much less severe than my counterparts here at my UCLA support group. I am two months out of my radiation treatment.  There may be symptoms that have yet to show up, but I have some saliva back no mucus, can eat most things if they are wet and my neck has been unmarked for one month. I have very little trismus and my swallowing is good.

i highly recommend finding a proton center and researching radiation for head and neck cancers. Radiation was never recommended for me. Only the future will tell how successful this treatment was.

Roxy5g

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Correction. chemotherapy was never recommended for me.  It was HPV virus squamous cell cancer. Check out Proton therapy .it was completely covered y my Medicare and a them blue shield supplement.  The whole experience  is hell and traumatizing.   There is no substitute for a good support system.   Roxy5g

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Re: recent diagnosis of left tonsil cancer

Hi April

wow, what a go of it for your treatment....i am not looking forward to it...my radiologist didnt want me to get a PEG but with Simon and everyones experience i will get one next week and he has ok'd it.....

 

i will get kemo and radiation 7 weeks or 35 blasts....like all of you got i think....i have read about oil pulling for mouth pain ???  http://www.cancergrad.org/blog/oil-pulling

 

i also take a huge amount of supplements and keep vitamin C in my body 24/7 with the help of a supplement and take about 1500-2000mg day....but they want me to stop that also along with all the other supps i take.....did you take vit c during your treatment or just stacked up prior ?

 

i am in U.S.....the docs dont like supplements....they look at me like i am a space cadet...but i am 70 and have been doing it over 20 years and was in super shape until they stopped my running and everything to conserve calories....

 

i go today for mapping and a dry run and should be started in a week for treatment

 

i am shaking in my boots....but i will do what i can to get thru it

 

i have left tonsil with a 2.2cm cancer and about 6-8 lymphs in left neck and back of neck and he said he will reduce the beam and shoot some on right side for preventive measure....i am afraid i will be a basket case being shot from the tonsil to base of throat....yeooooow

 

i hope i can keep mobility since i have family responsibilities and need to keep going...

 

he did say he will injure the thyroid, no avoiding that....

 

what i hope to NO GET is lymphedema......wow, the pictures are pathetic...it can happen with lymph node radiation.....what a night mare it all is

 

thank you for all your info....you have all been very helpful.....i hope i can pay back to others as you have helped me....

 

thank you

BIll

 

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