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

[April-Showers]

Kerrie Jane,

With the nebuliser he needs to use it regularly....I was using it every couple of hours even more....once will not have much effect.  I know it is a real pain to sit there and inhale but this is definately something you can assist him with, just making sure he is getting it regularly.  Showers are also another thing that helped, as Captain Australi mentioned.

You said you are going into week 9 of treatment, I understood he was getting 7 weeks of rad....has he completed his radiation now?

[Anonymous]

Hi Kerrie, Sorry I can only respond briefly as I’m overseas with limited data, I’ll contact you again when in a WiFi area. Regards Shane

[CaptainAustrali]

Hey Kerrie

There's no fixing this.

Cancer is a shit-show.  Absolutely shit.  I've directly experienced what you're going through (but from the sufferer's side, not the carer's), and I think there are two pieces of closing advice that I need to give:

1) As overwhelming as the current situation might feel:  it's temporary.

Some days it might feel like "So .. this is my life now".  Things will NEVER get better.  But they will.  Right now, you're both deep in the trenches of it.  It's probably going to get worse, not better (for me, the 2 weeks immediately after finishing the chemoradiation treatments were the worst).  
But ... in a relatively short period of time after treatment, all this side effect stuff starts to get better.  Then one day, they're yanking the PEG tube out (they literally grab it, double wrap it around their first, and tug hard and it *POPS* out spraying yucky stuff everywhere - hurts like buggery).
But yeah, it's small comfort, but if you can compartmentalise a bit, the one benefit of being in deep suffering is that it can usually only get better.

2) Acceptance and Distraction

You really can't change things, so you just have to get through it.
If he wants to sleep (elevated on a few pillows is best), and can sleep or doze or moan and groan all day .. let him do that.
If he's able to play games on his phone or whatever stuff he might do when bored - YES YES YES, keep him and yourself distracted wherever possible.
The key to getting through this, in my opinion, is to keep yourselves distracted, not focus too much on any aspect of the cancer, just get through this treatment phase.  Let the future take care of itself, let the current pain take care of itself, just ... whatever it is ... find that THING, and ride it full throttle. 
I don't know .. maybe he was a massive DOCTOR WHO fan as a child ... get the whole show and watch all 200 seasons (or whatever) of it back to back.  You know what I mean ?

Distraction.

Best of luck, I hope the end result of this is "all clear, we got rid ofthe cancer".

[CathV]

Hi Kerrie

I had forgotten I had to use a nebulizer but that helped a lot.

Distraction is the key thing here. I knew I would be having find things to pass the time so some people lent me DVDs and I had recorded quite a lot of TV programs. I found out after my head and neck surgery that I couldn't read (I love reading!!) so I couldn't read books. I had short attention span so TV was the best thing. I watched so much! I also sat outside sometimes to hear the birds, see the neighbourhood cats and look at my flowers.

My husband was very upset because I had turned into a zombie. He recently told me this and had a cry when we were on holiday last August. But it passes, it does! I am back at work and considering returning to full time. And maybe we will go to Chicago next year (there is a work conference) - yep, getting back to my old self.

[mahootna]

Hi everyone on this journey,

I haven't posted for some time but have been following everyone's posts.  Let me update you where I am at.

I am officially in remission as it is five years post surgery, January will be five years post treatment.  No more clinic appointments for  me.  Luckily I have a very good GP who keeps a close eye on what is happening with me.

There is not a lot you can research as we are all different and no two people react the same to treatments.  A lot depends on what type, how mcuh and strength of treatment as to how your body will react.  

I found out about the over production of other fluids when no saliva by chance.  Discussed the issue with a Resident one day and he related that he had other patients experience the same thing and that was how they worked it out.

Also, if you have radiation treatament in the head area your Hypothalmus is affected.  This is the main reason for the thyriod getting out of whack along with several other glands.  This is the area of the brain that regulates body temperature and this is why some of us become intolerant to cold weather.

I have to wear "ten" layers of clathing if I am going out when a slight cool breeze is blowing.  As I tell people when the ask "I am f** freezing"

For some of you things will improve in time, for others we will reach a point and that will be it.  Because a large portion of my tongue was removed I am missing those taste buds and the others are still recovering.

The mucosis is on on going issue for me and I have learnt to live with it.

I also care full time for my husband who is wheelchair bound and can only transfer from the wheelchair to another chair or the bed.  He now requires help getting dressed and showering.  Luckily during my treatment he was still able to walk with a walking frame.  I also had my brother living with us and he helped with meals.

Now it is just the two of us again because my brother has gone to live with the baby sister.

Whilst the cancer journey has been a pain, I try and focus on all the positive things in life.  My son turned fifty this year after a very long battle with drug addiction had us doubting he would live this long.  My beautiful daughter gave us the most precious gift last year, a granddaughter.  Harper Grace is such a joy and keeps me busy one day a week.  This little one even looks like her Grannie.

The one thing I still have a problem with is when someone says "but you are still here and that is all that matters", I just want to scream.  They have no  idea of the journey we have travelled to get this far and we are all grateful for the help and support given to us on the way.  We don't need to be reminded of the battle.

Take heart beautiful people, there are so many of us out here battlling one way or another.  One step at a time is all we can do.  Only surround yourself with those that truly care.  I have the two of the  most beautiful children, their partners and a very small network of close friends.  

Keep strong

[Debz77]

Hi Alan

I have just signed up to this forum and have been reading through various stories. My husband has just gone through everything that’s has been shared in this forum... HPV positive, tonsils removed (tumour in left tonsil) followed by 7weeks of radio every week day and chemo (Carboplatin as cisplatyn effecting his hearing) once a week (he managed 5) He experienced pain, mucas mouth, burns inside and outside of neck etc etc. He managed to force himself to eat (scrambled egg and soup) which kept him out of hospital. He bounced back from it all fairly quickly although 3 months later still very dry mouth and sore throat, husky voice! And oh yes he started snoring 😩 his lymph nodes not draining which causing swelling. Anyway - he had his 3 month checkup and unfortunately it showed that the cancer is still present in his lymph node so they are going to operate 5th Feb and remove around 35 lymph nodes (neck dissection ) Can I ask you Alan what you went through with that surgery? Just trying to prepare ourselves for what’s to come! Not sure if you’re still on the forum but would appreciate any  feedback. Thanks - Debbie

[Debz77]

Hi Alan

I have just signed up to this forum and have been reading through various stories. My husband has just gone through everything that’s has been shared in this forum... HPV positive, tonsils removed (tumour in left tonsil) followed by 7weeks of radio every week day and chemo (Carboplatin as cisplatyn effecting his hearing) once a week (he managed 5) He experienced pain, mucas mouth, burns inside and outside of neck etc etc. He managed to force himself to eat (scrambled egg and soup) which kept him out of hospital. He bounced back from it all fairly quickly although 3 months later still very dry mouth and sore throat, husky voice! And oh yes he started snoring 😩 his lymph nodes not draining which causing swelling. Anyway - he had his 3 month checkup and unfortunately it showed that the cancer is still present in his lymph node so they are going to operate 5th Feb and remove around 35 lymph nodes (neck dissection ) Can I ask you Alan what you went through with that surgery? Just trying to prepare ourselves for what’s to come! Not sure if you’re still on the forum but would appreciate any  feedback. Thanks - Debbie

[Alan22]

Debbie,

Some comments on the neck dissection surgery:- as my tonsil tumour had already metastasised to a lymph node under my left chin, the treatment plan was left tonsillectomy and neck dissection ( 15 lymph nodes), followed a month later by 6 weeks of radiotherapy. No chemo. Recovery from the  neck surgery recovery was very  good ( tonsillectomy not so fun). Short and long term side effects of the neck dissection has been stiffer neck ( which is managed with remedial massage every month). Neck is weaker in holding head in certain positions because of loss of muscle mass. Otherwise, side effects have been quite minor. Am coming up to 9 years since surgery. Yearly checkups with my surgeon.

Cheers, Al

[Debz77]

Oh that all sounds very encouraging Alan! I’m sure the side effects aren’t much fun but sounds like you manage them well. My husband got his tonsils out in July then had his treatment so his neck is already very stiff because of the radiation, hopefully the surgery won’t add too much to this. Good to know a nice massage will help. Thank you for your feedback! Pray you continue to go from strength to strength. Debbie

[CaptainAustrali]

I think that this thread has become a bit of a resource, so I'd like to update on my progress in case people want insight into the longer-game with head & neck cancer treatment & side effects (and for you other folks who've shared your stories here, I'd encourage you to do the same kind of thing).

So if you're looking at H&N cancer diagnosis, let me give a quick run-down, now 2 years out and disease free (touch-wood).  Obviously this is specific to me and the path toward successful (so far!) curative treatment.

1) Early Diagnosis
My sense is this can be the most dangerous and overwhelming time.  It was for me, I went through a period of about a week where the only information I had on the table was "you have cancer" and "without successful treatment, the most I could give you is 6 months to live". 

Worst aspects of this phase - psychological stress and stress on family and loved ones is the most devastating thing.  The uncertainty, the not KNOWING
Coping Strategies - for me, there was a two-part strategy .. carry the stress for the family (downplay it a little until I have complete information -- yes yes, it's serious, let's go to the clinics, lets stay calm until we know what we're dealing with).  And for myself, it was research like mad.  What's HPV ?  What's P16+ ?  Those are GOOD things and increase the chance of successful treatment ?  Woo Hoo ?  What are the odds that it's metastasized ?  What are the survival odds based on different disease progression scenarios ?    All that stuff helped me.  (But might just as potentially drive anybody else mental).  I guess the suggestion is be protective of your mental health and the mental health of your loved ones and find strategies that suit you

2)  Treatment Phase

Going in, you assume this is where the war happens, you're in the trenches and you will suffer.  I can say that the first half of treatment was a breeze for me.  Sure, appointments, info, stress, submitting to surgery to get a PEG tube inserted, etc, but the treatment phase isn't too bad until the radiation damage starts to stack up (alongside the chemo).
Worst aspects of this phase - after the first chemo you suddenly lose your taste, if you're going to get mucositis, you start to get phlegm issues here, dry mouth starts to set in toward the middle of treatment, you may be grappling with whether to get a prophylactic PEG feeding tube inserted.  (If your doctor suggest it, I personally say take their advice, it was a life saver for me).
Coping Strategies - this is the time to build yourself up - keep learning about your disease or rely on your doctors depending on personal style .. but if it hasnt gotten too hard yet, use that to bolster your confidence and morale

3) Late Treatment

For me, this is where the fecal matter hit the circular rotating overhead ceiling device.

Radiation burns stack up, internal scarring is starting to happen, chemotherapy has taken your taste, and if you have mucositis, it's going full blazes now.  Swallowing becomes harder and harder due to dry mouth (and potentially rancid taste mucositis).

Worst aspects of this phase - you get waves of fatigue sometimes, its hard to keep up protein and calories, you may lose the ability to eat and take medicine by mouth, some people have profound pain from neck burns, hard to sleep because of need to constantly spit
Coping Strategies - for me, distraction was key.  Find something you love and can still do, and DO it at every opportunity.  I dont care what it is ... 48 hour netflix binges, go mad with your xbox, read everything ever written by your favourite authors .. it's like being in prison .. you need to just do the time.

4) Post Treatment (first few months)

This was the worst time for me.  You expect to be through the tunnel, but it's gotten WORSE.

I had the bad luck of suffering severe mucositis, and it was the kind where everything in your mouth (including your own saliva) tastes rancid, like rotten meat.  You constantly have to spit and vomit, and the stuff you bring up is ... GROSS.  The burns, the swallowing, the spitting, the neck pain ... things didnt start to ease off for me until about 3 months after treatment, and I wasn't feeling significantly better until about the 6 month mark.  Add to this the stress of not knowing if it worked - you have to heal up for a few months before they can give you a follow up PET scan to get the all clear.  And you can have the morale blast of getting an inconclusive scan (I did) as at 3 months there can still be massive inflammation which the scan can't differentiate from cancer.  I didnt get my all clear until 5 months post treatment, after a demoralising UNCERTAIN 3 month scan.

Worst aspects of this phase - the fact treatment has continued and the daily support network is dissolving a bit .. BUT .. you're still suffering massively from side effects .. AND .. you're still uncertain whether you've beaten it or not
Coping Strategies - distration .. distraction .. distraction ... do neck exercises .. resume drinking as soon as you can (if you're off intake by mouth), start to rebuild your constitution a bit now that the radiation has stopped .. my advice is keep yourself at rest, remain in that uncertain limbo .. but as a gesture of faith, start to make little efforts that indicate that you plan and expect to survive .. 

5) 1 year post treatment

OK, now everything is a bit better.  Taste is starting to return .. some people report 50% some as much as 95%, for me it's hit-and-miss .. foods you once loved, you can no longer tolerate, other foods you hated are now go-to sources of taste.  But mostly .. everything is a bit better.
THE KEY ADVICE I CAN GIVE HERE:  CHECK THYROID DAMAGE

Radiation induced hypothyroidism is actually a common side effect, and it's not mentioned by the clinicians or in the literature.  Get it checked early, otherwise a year can go by and you wake up to tertiary health problems and massive weight gain before the thyroid problem is discovered and diagnosed.  Get it checked out just in case.

Worst aspects of this phase - the lingering uncertainty of recurrence, the fact that even though its a year later, the side effects are still there, and the worry that they will ALWAYS be there
Coping Strategies - celebrate the wins, try and return to life wherever you can, have fun, compartmentalise your disease and the problems around it, and quarrantine those crap aspects of your life from the bits that are still healthy, whole & good.

6) 2 years post treatment

Still got side effects - thyroid problem is a big one, get radiating cramps along the side of my face from nerve damage (kinda like a leg cramp after running, but in your head .. apparently it's benign).  Saliva isn't great, but a lot better than it was, just carry a bottle of water.  Mucositis is gone, but still feel an ongoing sensitivity to mucous and vulnerability to it due to the dry mouth. 

Worst aspects of this phase - still that lingering uncertainty of recurrence (apparently at 2, 3 & 5 years the stats for recurrence dip significantly, which is good).  The tendency to defer living until you reach some magic line in the sand where you can say the cancer business is done.  (and just spend your time with netflix binges or whatever it is that got you through)  
Coping Strategies - try and rebuild yourself, make deliberate efforts to actively engage in useful and productive projects, keep actively working on any health problems and take your medicine.