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

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

HI there Bill,

 

Yes I experienced exactly that in the last week of treatment.  I went into radiation oncology and told my oncologist that I wasn't gong to continue that I couldn't continue and how I wanted to give my body a chance to fight ( I had been doing a lot of reading on natural remedies for treating cancer and how to activate the bodies ability to fight).  He just looked at me with such sadness and told me to follow him into his office.  I sat there with my husband and the oncologist pulled up photo's of my neck prior to the neck dissection.  He said we do this when the body wasn't able to fight.  You have four kids, you are very young to be here you have every reason to live....You have to complete this, we will get you through.  Of course I broke down and all my husband could do was exchange thankful glances with the oncologist.

 

I got through, I continued the treatment, I had to .... I had every reason to live.

 

So do you Bill.  Head up...and fight the good fight!  

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

Hi April

thank you for your support....its is well needed indeed....

 

well i got one   done on Monday and today i will finish....its a go of it tonight....no sleep....chocking lumps of mucus as i am sure you all have had and must sit up otherwise i could aspirate all that garbage into my lungs while sleeping........ but to be expected.....i am now starting to see the light at the end of the tunnel....thank you for you kind words of inspiration....

 

Bill

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

Good on you Bill....one to go!!!  You have definitely fought the good fight!

 

HN treatment is beyond words, I absolutely know where you are at right now. 

 

When I finished treatment I couldn't sleep flat I had to sleep on a few pillows or upright. 

What helped. 

-   I got a humidifier for the bedroom that was excellent

-   Showers (once you get the go ahead from the rad burns of course), the steam was good for loosening the mucous

-   I also used a nebuliser 5 or more times a day to break the mucous down.

-  Water, as much as I could handle orally.

 

Warm dry rooms are the worst place to sleep, try to keep the room moist with steam.  After treatment it will get a bit worse before it gets better but treatment is OVER so you are on the better end of things now.  It is time to heal, rest and recover.  Things will never quite be the same but you will reach a new normal....eventually.

 

All the best Bill, stay positive!

 

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

Keep battling Bill - you'll beat it and look back to admire the courage and fight you excerpted.

 

I'm just ending my second tour of chemo radiation, with a neck dissection thrown in for good measure - you can't give in to the evil bastard that is cancer.

 

This time around I've been keeping a weekly vlog, thankfully my second tour is lower down and much easier to endure - here's the latest episode of my vlog - https://youtu.be/lg0CQV1RhqQ

 

Cheers

Shane

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

Hi! Glad to see to see you’re doing so well then years later.
Please can you direct me to the post about the long term side effects from your RT please? My partner is considering RT at the moment.
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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hi - I touched on radiation effects in a few vlogs, you're welcome to check them all out on my YouTube channel, the latest one can be found at 

https://youtu.be/6bSK0K2bjSY

 

I'm about 6 weeks out of treatment now and my skin is almost back to normal in terms of burns, but I'm still very stiff which is the radiation combined with surgery scars - I'm having weekly physio to loosen things up and regain some strength in that area.  Thankfully the fatigue and other side effects are also lifting with time.

 

Regards

Shane

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

Hi Captain

long time since my last posting....

i am the 70 yr old in great (or was) health with left tonsil cancer and 4 lymphs in neck

coming up on 3 months post treatments of 35 rad and 7 chemo cisplatin

terrible time on the rebound

had thrush really bad for over 90days with medication

mucus  is still terrible if not worse than in treatment...my mouth is a mess with dry as the desert then changes to foaming then goes to sticky thick then strings of horrible mucos....its the worst....

the Dr. just says it will go away

can not eat...anything that goes in my mouth makes me want to throw up due to taste and texture

i am holding my weight due to feeding tube and haven't eaten food in 3-4months...thank God you really insisted i consider a feeding tube...without it i wouldnt be typing this

my energy is 100% but my life is worthless at this point

not being able to eat is devastating since i am so sick of it...i have hunger but when i put something in my mouth its disgusting due to the saliva slime, foam, dry whatever is going on in there at the time.....i will rinse my mouth and then try but no go...tried soda, drinks with food and cant get t a bite down

 

have you heard of this and do you think it will go away...you seem to have been on this forum for some time and wonder if i have a unique problem here that may not go away....

 

Sunday i go for the PET scan to see where my body is at...

 

Happy Holidays and Merry Xmas

Bill 

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

Merry Christmas, Bill

   Yes it will pass!  Each of us has a diff schedule but the disgusia and the rest does ease with time.

    Looking at 6 months past ny last chemo...and now fighting round 2 with alternative means, let me say Be Thankful for that 100% energy level you speak of having.  My energy and will is just coming back but it's happening daily.

   About that thrush, mouth sores and stringy stuff-keep that mouth clean with baking soda gargle...do it hourly if you have to and don't even think of catching a nap without gargling.  Eventually you can try alternating with peroxide.

   For me, peroxide mouthwash seem to disagree with my mouth sores so I stuck to baking soda with minimal salt (salt was painful too).

   I didn't go the tube route (vanity, really) and paid one hell of a high price (6 months later, still haven't gained an ounce of the 25lbs I lost).

   Mouth and throat cleanliness is paramount AND do google "swallowing exercises for cancer patients" or such.  Do them religiously!  Moving those muscles will help with your overall program for mouth and throat ckeanliness and health.

   Hang in there and be agressive about doing what you can to improve whatever little part of you can be regained.

   Cheers,

  Joe Aristy

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

thanks Joe...i have been using salt and water to rinse...my mouth is no longer upset with sores but my tongue is getting white but i brush it and some of it comes off...the salt water doesnt hurt....i use an ultrasonic toothbrush and i floss...i couldnt brush for a couple months i was so bad....not so bad now...i have trays to take fluoride treatments at night for 30 minutes but i cant use them yet since they dry my mouth out severely over night and after treatment cant eat or drink all night?

 

thanks for the good words and i will try to continue to get thru this mess...sorry to hear your going thru this again...wishing you the best

 

thanks

bill

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

Hey Mate

In a year, you won't know yourself. 

I know you want to hear "in three weeks" or "in 10-12 days", but everybody's mileage will vary and for me, side effects were still nightmarish about 3 months out of treatment. 

The two most important things are:

- all this dark shit WILL end, you will start to feel better, the only way is up from here, it just takes time

- the PET scan.  I hope you get the all clear, mate.  That's what it's all about.  NOTE:  a high percentage of FIRST scans come with a false positive .. the scan can't differentiate between cancer and inflammation from all the nerve damage etc.  If you get a positive, they schedule a re-scan in 2-3 months.  If this happens, don't deflate.  I had the positive and then the all-clear.

 

My advice on this - do everything you can to distract yourself and persevere your mental health.

Be militant about it.  Try your best to not let your mind go there.  Position yourself in the role of fighter,  Muhammad Ali trying to Rope-A-Dope Smokin' Joe Frasier.  The symptoms, the problems .. you are not VICTIM to them, you are MANAGING them.  It's a jedi mind-shift, but you have to try the trick. 

Distract yourself.  Whatever your 'thing' is, indulge in it, bathe in it.  For me it's computer games.  You may like the collected works of Agatha Cristie - whatever that thing is, try and make it the main focus of your free time, us it as a mental distraction tool so you don't spiral into anxiety and distress over the symptoms.

 

The symptoms will go away.

The anxiety sticks around.  Not sure how long, but 3 years out of treatment on Christmas Eve, every cough, sore neck spasm, whatever - I often worry that the cancer has come back for a visit.

 

The main thing is this scan, matey - hope it goes well.  Best of luck.

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