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)

Hey Sheryn, 

 

so sorry to hear of your fathers reoccurrence of cancer. That’s not what you want to hear after going through all that treatment. My husband had the same cancer last year, finishing his treatment 1st November 2019. So far, so good for him. He has extreme fatigue, depression and anxiety and although initially going back to work in February, he lasted a month and has been off work since. He is due to go back Monday 1st June part time.
He is eating a lot better  But has not regained any of the weight he lost. About 18kg. 

I have no answers for you but know how you must be feeling. It is in the back of my mind every day.....what if?
This forum really helped me when he was going through his treatment. He won’t join it himself but I wish he would. I think it would help him but I pass on some of what I read and he’s happy to listen. 
Take care of yourself. I hope you find the answers you need. 

Julie

 

 

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

Ahh mate, what a shit show.  I can't offer any practical advice, just some shared experiences.

 

I'm about 3.5 years out of treatment for head and neck cancer, Cisplatin and radiation to both sides of the neck.  In the past year and a half I've developed new symptoms that I find disturbing but the doctors kinda trivialise.  They say it's pretty much nothing, and to be expected.

 

The symptoms are pain and spasm related, and I worry a lot that it's triggered by some new anatomy (eg thyroid tumour - because my thyroid was massively screwed up by the rads).   But I have to put faith in the medical team - their expertise and experience.  

 

I've also experienced choking - but mine is mucus related.  I got really bad mucositis during treatment, and I'm constantly coughing up chunks of phlegm, it's pretty much a daily exercise even now.  

 

One night I had some acid indigestion, and I think a bit of an acid burp partially dissolved a chunk of mucus, which then slipped down and blocked my airway like a kind of malign gluey oyster.  I woke up wheezing, only able to get about 10-20% of my normal amount of air down the pathway.

 

I gasp, wheeze, stumble, scare the family, and eventually the heavy aspiration  clears the plug, it just kinda pops all at once (being carried down into my stomach I guess)

 

Since then - some anxiety sleeping, especially on my back (which is how it happened - and incidentally my most comfortable position).  Often I go sleep alone on the couch because the head-rest elevates my noggin.  But yeah, anxiety when lying in certain positions, anxiety about dying in my sleep.

 

Because I have these problems, and because they feel really impactful on my day to day life, it's easy to let anxiety about cancer recurrence start to nibble around the edges (or come from the periphery outright into the centre of your mind).  I don't want to die.  I have three young kids, if for no other reason I want to be there to look after them.

 

And I have to trust my doctors.

 

For me, cancer is as much a mental battle as a physical one.  Yes, the treatment is paramount to saving your life, and there are no guarantees.  BUT .. given that there are so few things within your control, one thing that you can try and take the reins on is your mental health.

 

I did a pretty good job, I was super strong throughout the treatment and subsequent recovery.  Some nights nowadays, I feel the anxiety come nibbling, like a rat looking for weakness in the pantry wall … but I have to fight it.

 

I think distraction is a useful tool - take the thing you find most fun or rewarding in your life and dive into it.  For me, as nerdy and pervy as it sounds in equal measure, that's rumpy-pumpy with the wife and burying myself in computer games.

 

If I find myself tossing and turning at 2 in the morning and I could let my mind run over and over the cancer stuff - I switch the brain off, fire up the computer, go into VR, and explore other galaxies (great game called "No Man's Sky"), or kill some zombies, or build some cities and try not to go bankrupt managing them .. or any other type of games - you get the drift.

 

I'm a little embarrassed by it .. but I've loved computer games my whole life .. if I ever needed an excuse to dive headfirst into them, I have one now.

 

I reckon with the anxiety you're experiencing, many would say "professional help"

 

Who knows, maybe that could help, maybe they could give you strategies you haven't already considered.

 

(Me, I say fuck that)

 

It sounds like you're a little bewildered about the magnitude and origin of the anxiety - perhaps because you've kept a solid lid on things up until now.  My advice would be simple:  find that lid and screw it back down.

 

Some folk might say that's avoidance, I say bullshit - it's compartmentalisation.

 

You can analyse your anxiety, you can think about death, cancer, any and all topics spiritual and terrestrial ---- but do it when you have a healthy mindset.

 

Me personally, I think for some of this stuff the best tactic is to wait it out.  Kinda trick it into submission or abatement.  Don't try to figure it out while you're suffering, unless you're in dire need and have thoughts of self harm and other heavy stuff .,. if it's inconsolable and unmanageable, reach out for help right away, concrete, professional help, I guess.  (As well as support from anywhere else it's available)

 

But .. if it's sleeplessness, anxiety and other stuff muddling around in your mind - my advice is to compartmentalise, try and push that shit out the window for the immediate short term, get a bit of sleep, try and strengthen yourself over a few days, and look at it in the bright light of day when (hopefully) you're feeling a bit better having dealt with a few immediate short-terms (sleepnessness is bloody awful, it's a terrible side effect of anxiety - I reckon a lot of death certificates that read "suicide" could just as easily read "insomnia")

 

Everyone's wired differently, I guess my comments and advice are as if you are ME, and you're not.  If any of it reads as really craptacular, shout it down.  But yeah, I'd posit that maybe your worry isn't actually cancer, but worry itself.  Sure you may have a physical problem, but in tandem with that, the anxiety is a slippery slope.  If you can do ANYTHING to get in front of it, I'd just urge you to try, mate.

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

Hi Mate

 

Thanks for your reply as i really enjoyed reading what you said. You come across as a very intelligent man and i must hand it to you for being so strong for your children. You certainly are a family man. 

 

Myself my daughter lives in Ireland as she works as a lawyer in Dublin and my son lives in Philippines as he goes to Private school there living with family while myself and my wife came back to Australia so i can continue with treatment. We were suppose to fly back to Philippines but with Corona Virus we have had to stay in our house in OZ while this virus dies down and we can then fly back to Philippines for a few weeks so i can be with our son again then back here again with doctors and possibly more treatment. 

 

Your quite similar in a way regarding video games as if i start feeling a Anxiety attack coming on i also get my xbox out and start playing the Formula1 as that tends to work for me or i get stuck into the accounting bookwork of our business back in Philippines as we have a small resort and a few pubs over there. Being away from the business and my son is hard but i manage to use skype and chat.

 

My cancer however is terminal and yes sometimes the anxiety rat trys to sneak its ugly head in and sometimes its hard but i have started meditation now and that works well.

 

Having sinus cancer is a real pain however as you feel every little bit and when the tumour is blocking up your breathing it gets very scary but hey you just have to keep fighting it and keep praying that one day this shall pass.

 

You keep fighting mate and thanks for your message as it meant a lot.

 

Best Regards

Trevor

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

Hey, I'm sorry that your cancer is terminal - I just wanted to say a few things about that:

 

1) I was given six months to live (more than 3 years ago).   Although I had a chance at curative treatment, knowing that your expiry date is looming is a horrible thing to deal with.  I recognise that.

 

2)  BUT … you're still alive.  Still viable.  We all have to die.  Unless you're Dracula or a comic book superhero, we all die and there's no coming back (that I know of).   But you're not dead yet.  A few houses down from you there's probably a child living a happy, delighted life, untainted by the fear of death .. and yet they are doomed to die tomorrow.  It's tragic, a kick in the guts thing - but it's just how the system works.  It's inescapable and often unfair.

 

3) Therefore - the real kick in the guts regarding death, impending or unknown, is .. like many things .. the FEAR of it.  I think for the most part people innately fear change - and there isn't much bigger change that dying.  The problem with fear is it contaminates all the GOOD stuff.  The way modern society is reacting to coronavirus is a good example of that .. I think events are largely coloured by our modern obsession with self & drama, and a heavy dose of fear.  I think the paramount thing is to not allow the fear that comes hand-in-hand with cancer and death to rob you of all of the remaining smiles and delight that is available to you.

4) Even though your cancer may be terminal, I think the opposite of fear is hope - and I personally would try to find & hang onto some of that until the last possible moment.  Science, treatment methodologies - it's all in a state of flux.  I've mentioned before a relation who did wind up dying of cancer, but he was in palliative care and had weeks to live.  They randomly offered him a new immunotherapy trial and it extended his life by about 5 years.  Five weeks to five years is pretty good, I reckon.  Anyway, as long as we are still alive, we don't know precisely when we will die.  Even as pain and fear weave themselves into our lives, we still have tools to try and fight back.  Even if we don't completely succeed, even the small wins reward us with some kind of quality of life result.   So yeah, mindset is (just in my opinion) important, you can flag your facebook status as "I'm going to die soon", or you could do it as "I'm not dead yet".  I think the latter is much better.

5) Mate, when you do pass, I'd ask you to consider setting your frame of mind as this:  it's the only true human adventure.  The only true and absolute unknown.  We don't know what's going to happen, and we all get to find out.  No reason to hasten it, that's stupid.  But when it happens, that's the back-handed gift of it .. no matter what faith a person has, nobody truly knows the deal.  Anybody who says they do is lying (to themselves at least).  As equally possible as heaven, hell or nothing, is that you gasp and wake up coming out of the Matrix, surrounded by machines.  I know it's probably shit advice, but if there's any way to transform the posture from anxiety to adventure, it might help with squeezing all available fun, joy and love from the rest of your life.  The anxiety shit tries to steal all that stuff.  It tries to corrupt the life & possible happiness that remains available to you.

6) Now this is just a personal quirk, but if you haven't already, it's worth thinking of any little leave behinds you could do.  For me, I'd want to do funny stuff - record little messages for people I care about that might initially help with their grief, and later make them smile in memory.  A terminal prognosis is a really shit show, no doubt - but it also means that we can prepare ourselves and the people around us a bit .. I'd probably even have a crack at curating my own funeral.  Sing an awful karaoke version of some wildly inappropriate song for them to play while people walk in.  Dunno.  I just think it can be as bad or even worse for the people in our lives, so it's nice to wind them into the equation as much as possible.  It's also a great distraction.

But yeah, you're not done yet.  We're connecting here, right ?  You're a viable, important passenger on Spaceship Earth.  Good luck with everything - take my remarks with a grain of salt if any of it is annoying or distressing - but if there's anything in there that is of benefit, take it and run with it, with my blessing.

All the best, amigo.

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Re: recent diagnosis of left tonsil cancer

posting this report in the event you were NEVER TOLD by your doctor which is my situation...never told....it appears that with my tonsil cancer and stage 4 with 4 lymphs that would have been an option that might have been quite beneficial...dont know if anyone can read into this and let us know their thoughts but if your now or going into treatment you need read this and perhaps consider it....new patients should have a copy of this when inquiring about the procedure ??  any thoughts

 

 
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Re: recent diagnosis of left tonsil cancer

G'day Bill,

 

Thanks for the heads up with this link. I'm on warfarin for Afib so unfortunately I cannot take any of those meds. Might helpful to others though, hope it is.

 

Hope you are doing much better with the side affects.  🙂

 

I had a pet scan some three months back and got the all clear, also seen the Oncologist last week where he prodded my neck and stuck the Camera up nose and down throat. Told me it  was looking good however I had a lot of scar tissue due to the radiation.

 

Mouth still dry no saliva and not much taste. I do not believe that will change and this is as good as it gets.

 

Hope this see's you well Mate.

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Re: recent diagnosis of left tonsil cancer

Hi Mozz

good to hear you are well...same here on dry mouth and taste...i am 9 mo out of treatment and they say i am doing well but it certainly is a new normal...all my favorite foods and drinks now taste like flour and water and the beer tastes like rubbing alcohol...but i guess its due to the scar tissue which i also have plenty of.

 

problem i have now is anemia...my cancer doctors think nothing of it but my gp is not feel that way...he has been testing blood and due back again in a couple weeks....do you know if anemia is common with throat cancer treatment and the gp is missing something....how are your blood tests...are you back to where you used to be prior to treatment ?

 

i had a PET 3 mo out of treatment and it was clear....and all doctors say unless something pops up they will not do another pet again and just do chest xray once a year ?   how many PET's have you had since treatment....they also told me i can have one anytime if I REQUEST IT but they never do another one unless symptoms pop up ???

 

my symptoms were something but now under control....i ended my treatment Oct 4 but had to use my stomach tube until May....could not eat due to taste and get sick thinking about food...my symptoms post treatment were dramatically worse than during treatment...without the stomach tube i believe i would have not made it...Capt. Australia really helped me to decide to get a PEG tube and i might have been that one in a gazillion like he was that truly needed it but he saved my life because i could not face eating food and as a result i stayed hydrated and maintained all my weight thru the treatment and post treatment with the PEG and would truly recommend it to anyone going for treatment...its now that i cant eat that much and loosing some weight...down about 10lbs from previous weight because i am not an eater like i used to be...its all one taste of nothing but i get thru it but cant do quantity so i supplement with protein drinks with the meal.... ???

 

i am grateful to have made it and hope over time we will all get better and back to a better normal from where we are and continue to improve and that it is the end of it for cancer...time will tell

 

stay safe with the virus and all....

 

regards

Bill

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Re: recent diagnosis of left tonsil cancer

Bill Writes @[problem i have now is anemia...my cancer doctors think nothing of it but my gp is not feel that way...he has been testing blood and due back again in a couple weeks....do you know if anemia is common with throat cancer treatment and the gp is missing something....how are your blood tests...are you back to where you used to be prior to treatment ?]

 

Hi Bill, My blood is okay at present, Triglycerides are a little high. I had thyroid checked and my immune system which apparently Chemo affects. my immune system seems to have bounced back. My treatment ended on 13 March 2019.

 

Here is a link I found linking Anemia to cancer:

 

https://www.healthline.com/health/cancer/anemia-cancer#treatment

 

I presume your iron levels would be checked with your blood tests? Could be since our diets aren't what they used to be and taking a long time to get back to normal eating habits if we ever do, you may be experiencing low iron levels? Something to bring up with your GP.

 

Bill writes@ [i had a PET 3 mo out of treatment and it was clear....and all doctors say unless something pops up they will not do another pet again and just do chest xray once a year ? how many PET's have you had since treatment....they also told me i can have one anytime if I REQUEST IT but they never do another one unless symptoms pop up]

 

I had two pet scans three months apart post treatment. Which would have been in June 2019 and then again September 2019. In December 2019 they just prodded the lymph nodes in my neck and camera down throat. I next had a pet scan in March 2020 and then in june 2020. Last appointment was a week back where they again just prodded my neck and camera down throat. Next appointment is in January 2021 for another pet scan. They told me after that it would be yearly pet scan from here on out until the 5 year mark.

 

I did not have the Peg tube like you or Capt Australi. I continued to eat until mid way through the 5fth week and at that point due to mucositis I could no longer eat and had a naso gastric tube fitted and injected protein drinks into that as well as water and crushed up all meds and injected them into tube as well.

 

When they removed the tube, I could only drink protein drinks, no solids. Food and beverages tasted crap, still do lol. and I could barely swallow anything. I am back to eating solid foods now but they have to be mushy or mixed with a lot of gravy because of no saliva I just cannot swallow anything. I still use the protein drinks now and then instead having a meal because it's just easier to swallow.

 

Yep, a Peg or naso gastric tube is a life saver would agree with you there. I don't think having Protein drinks now and then would be much of a problem. I still do as I mentioned.

 

Wishing you a continued recovery Bill and yes the new you/us and all who have gone through this well.....it's not like life prior. No argument there.

 

Stay safe in these crazy times mate.

 

Regards

Maurie

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Re: recent diagnosis of left tonsil cancer

Hi Mozz

thanks for the link...getting more blood tests end of next week and will add iron to it also if the dr did not....some of my numbers are high and some are low...but not off the charts...i am hoping he is just being cautious...time will tell i guess....currently getting headaches all the time and never ever had head aches...

thanks

BIll

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Re: recent diagnosis of left tonsil cancer

Hi all,

 

Diagnosed in August 2019 with HPV16+ - t1n2pn1m0. Tonsil and lymph node (left hand side).  Had a neck desertion and tonsil removal(Tors) and took 3 weeks to recovery.  Saw 2 DR's and an oncologist afterwards and decided to not have Chemo or radiation as the 5mm margins were negative.  Had a 12 month PET scan and cancer has returned to my right side tonsil and lymph node. Two primaries is rare. In the PET scans before and after the op there was no detection on the right side.

 

Decided not to have another op and heading to the cancer center for radiation and Chemo. I will keep you updated as I go.

 

andrew

 

 

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