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

[OzStu]

Two to three months.   Geez, talk about favoritism.  Seven months from when I first walked into hospital after referral from GP, until I got my first chemo and radiation.   And it took 3 weeks from when GP referred me with my paperwork marked "URGENT"  until they actually saw me the first time.   I'm amazed I didn't die before I ever got any treatment. 

[CaptainAustrali]

Hi There

I originally started this thread almost five years ago, so I wanted to give a quick rundown (and also an update, because I've met some wonderful people in this discussion).

FIVE YEAR SYMPTOM SNAPSHOT:

All the stuff listed previous gets better.  Take hope from that.  Here's a quick list of stuff still in my life:

- mucositis:  there was some longer term damage to my mucosa lining, so there's an enduring sensitivity if I get anything stuck to the inside of my mouth or throat .. gagging/vomitting

- saliva:  it's like 25% of what it was pre-cancer, and will probably stay that way

- taste:  it's like 80% back, but some stuff has permanently lost it's taste.  Eg french friest now just taste like cooked potato, regrettably

- facial cramps - if you had head and neck treatment, you can wind up with fibrosis, nerve damage, lymphodema.  Basically there's scarring and the lymphatic fluid accrues, and when it displaces stuff you can get cramps and spasms.  DO YOUR NECK EXERCISES IN AND AFTER TREATMENT

- swallow .. mostly good, but some minor impairment, a little compulsivity, I think due to the dry mouth

- tinnitus:  GET MENTALLY STRONG WITH THIS.  It's as bad today as it was during the chemo, but you can develop the mental strength to zone it out almost completely (until you think of it, bah!)

- vision/hearing:  I think chemo attacks fast replicating cells, like your hearing and vision.  I was 20/20, great on both aspects until the chemo, then straight after, a bit of a decline.  Sure, I'll turn 50 soon, so it could be completely coincidental, but it started after chemo like the flick of a switch

- THYROID:  This is massive.  If you're putting on weight, DO NOT ALLOW IT TO GET AWAY FROM YOU.  It's so much work to turn the ship around.  Head and neck radiation can induce hypothyoridism, and you need medicine to mitigate it.  It's seriously something like 20% of H&N cancer survivors get this to some extent .. so if you see the scales getting heavier, jump on it.

NOW, to some of the lovely people I've had dialogue with over the years:

1) I'm doing wonderful.  End of last year, I came through the tunnel.  Completely strong, mentally/physically/spiritually moving toward health/healing/happiness.  If you like check this video out, it shows that journey toward hope and how I'm turning back the thyroid damage:  

https://youtu.be/1UTpafavA04

2) I'm committing this year to fixing myself, and at the end of that process, I'm going to dress up as the superhero Captain Australia and walk from Brisbane to Melbourne (2000km+ route) for the Kids Cancer Project.  Sleeping rough, a real adventure.  If you like, check it out 🙂

https://captain-australias-big-walk.raisely.com/

[April-Showers]

Hello all,

I am just behind Simon with my H and N cancer  journey...4 and half years out now.

I can say that everything Simon has mentioned is what I have experienced.  My thyroid condition was diagnosed two years post treatment and I'm taking thyroxine for it.  But like Simon I have had a considerable weight gain which has been highly frustrating and near impossible to move.  Things have never quite been the same again.  I can add that over the past few months I have been developing rashes on my neck that flare up with stress etc.  Tinnitus is something I live with and lack of sleep and stress will elevate it.  Swallowing dry food without liquid on hand can be tedious; just not enough saliva to deal with dry food.  However, this doesn't prevent me from eating dry food I just need water while eating.

I returned to full time work within 6 months after treatment ending.  I work as a teacher and returning to the classroom has been nothing short of therapy for me.  It has helped me to get on with my life with a new perspective that only this cancer journey could have helped me to find.  I feel grateful and forever appreciative of everyday I live without cancer.

Yes life will never be the same, but being alive and witnessing another day is something to smile about.  

For those in treatment, head up, it will pass and you will find the new and redefined you; better days are up ahead just keep strong and stay positive.

April 

[CaptainAustrali]

Glad to hear you're still kickin', April.  Good on you.

Those side effects are garbage, no doubt about it .. but I think you can overcome it.  All the best, mate, teachers are wonderful and precious, can't lose a single one of them !

[Polo0087]

Hi everyone,

This is a real tight community and I appreciate all the information. I have a friend that went through HPV treatment  (chemo and proton therapy radiation) and is still having severe side-effects 3 1/2 months later. Is this normal? There are some days where his throat is almost completely closed. Just trying to see if others have experienced the same thing. Even with proton he has very little saliva, but we are hoping that returns back to at least 75% eventually. Thanks in advance for the replies. 

[CaptainAustrali]

Hi Mate - no doubt everybody's mileage will vary, but for me the first six months out of treatment were oppressive.  I don't think I had my PEG feeding tube removed until about 5 months out (from memory).  I had mucosa damage, rancid-taste dysgeusia, a bunch of issues that affected eating and nourishment - if your friend can get eating sooner, they may start to thrive sooner as well.

But be ready for significant issues over the entire recovery phase - I'm coming up to my 5 year anniversary and it's only just now that I'm feeling good again ... and that's not because I have NO side effects (I have a bunch, some severe) it's because I've learned to accept them and work around them.

If your friend is only a few months out, they may not even know if the treatment worked or not ?  Be ready for a lot of stress and distress at that time (where you want an all-clear PET scan).  But yeah, even if they're in the clear, they may still need support and understanding.

[Janine3220]

Hi Captain Australia

You are a beacon of light and inspiration. Thank you for your blogs and loving heart. Wishing you the best moving forward.

Janine 3220

[Alan22]

Hi, I agree with comments that first few months can be nasty. I lived on ENSURE supplement drinks for a good few months until taste gradually returned to about 75% over a couple of years. I am 11 1/2 years clear post radical neck discectomy and radiation. Saliva only 25% but chew recaldent gum a few times a week to stimulate saliva and protect the teeth. 
would encourage your friend to try some complementary therapy’s like remedial massage, acupuncture, etc.there is a good Cancer Council booklet on these. Good for pain management, stress relief and a feeling that you can manage the side affects, rather than a victim of them. Is worth exploring.

All the best,

[CaptainAustrali]

Wow, Janine - thank you for your kind words.  I'm not sure I deserve them, but I sure will try and live up to them.  All the very best to you (and anybody else who comes to this unfortunate place.  Be strong!)

--- Support Captain Australia's BIG WALK for the Kids' Cancer Project, Info here:  https://captain-australias-big-walk.raisely.com/ ---

[CaptainAustrali]

Hey there.  I started this thread almost 5 years ago, trying to figure out how bad things were going to get, what the right decisions were, what the smart choices were, how to best navigate through my treatment.  I'm sorry if this isn't appropriate, I've just corresponded with a bunch of people in this thread over that time, and in sharing our advice, trying to help each other, I think we had a little core of people who also ended up helping themselves.

April, I lost almost all of that thyroid weight.  I don't know if you're still struggling, but I've dropped more than 50kg of the 60 that I put on after treatment.  Still have the laundry-list of medical problems, but I no longer allow them to contaminate my life & my hope.   If you wanted to, this is a story on Channel 10s "The Project" about a big walk that my cancer took me on,  I wanted to share it because for me it's the Coda of my fight with cancer & it's side effects, it's me putting cancer completely behind me.

https://www.facebook.com/watch/?v=283341400051472