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

[Jen827]

Hi Everyone!  I am 9 months post treatment from nasopharyngeal.  Did anyone every have weird bumps or growths pop up during routine monitoring follow up appointments on their exams or scopes?  I have had perfect scopes until today when there was a weird new growth near my primary tumor site.  The doc just said we will monitor but I’m hoping someone has some advice bc I feel like I’m spiraling down the cancer rabbit hole again after the shortest remission in history.  He said it could be granulation tissue from healing but I also felt like he was trying to calm me down.  Any input would be very helpful either way - if it was nothing or something.  I just feel like I need to talk to people who understand.  Thanks in advance!

[CaptainAustrali]

Hey Bill - mate I can directly relate to your situation, and can offer some comfort .. I went through the same kind of thing (honestly I think mine was a bit worse) and it got better.  You just need to be patient with yourself.  Honestly, the fact that you can take anything by mouth at this point is great.  My advice would be .. stick to water, but instead of 1x per week, make it 2x per day (or as much frequency as you can tolerate).  If water is no longer a struggle, move on to light soup (not chunky, just liquid, like basically beef stock and water).  repeat .. if you're taking that a few times a day, you're well and truly on the road, it's just going to be a couple of weeks before you can eat real foods (just stick with stuff that's soft and moist at first and experiment from there).

I'm 3 years out, and the dry mouth and saliva problems .. well, they haven't really gone away .. but as the other side effects start to erode, everything becomes less daunting and more manageable.

Straight out of treatment, it's a waiting game.  If your mind starts restlessly ranging into the future "when will this end ?"  "what next", I'd urge you to just reel it back into the NOW, distract yourself a bit and get through it .. if you allow another few weeks to pass, you'll feel at least somewhat better .. every week that drifts past is a win.  The big enemy is cancer recurrence, so if you need to look toward the future, keep your eyes on that prize and visualise that scan at 3 years out where the doctor says "there's no evidence of cancer in your body, recurrence from this point forward is very unlikely"

Sorry, sounds like you got some bad info from your doctors, I'd rather get bad expectations and be pleasantly surprised.  So actually, maybe don't shape your expectations too much around what they say.  But yeah, look forward to that 3 year mark .. 3 and 5 years means you can buy one of those "I BEAT CANCER (and all I got was this lousy t-shirt)" t-shirts.

[CaptainAustrali]

Hey Jen - worrying about cancer recurrence after treatment is one of those rabbit holes that pretty much everyone is destined to fall into.  Don't let the fear knock you over, tackle it headlong, it's just another symptom of the disease and treatment.  (A lousy one).

If there's a bump, diligently follow the diagnostic process.  If the doc says its nerve damage or inflammation, take heart from that.  

When you've had head & neck cancer, it's unlike many of the other types .. they blast the apparatus you use to breathe, eat, drink & speak with radiation and saturate you with toxic chemicals.  It's a mess.  But yeah, the radiation can do some pretty serious damage to important parts of your body like your thyroid.

For contrast - I'm 3 years out of treatment, and I have daily pain in one form or another.  I have weird lumps that form in my neck (and go away) as well as a hard little nodule in my left neck lymph node.

And it's all OK.

Despite the worry that the nodule was cancer related, it's my submandibular salivary gland, and it's shrivelled and scarred (destroyed might be a better word) by the radiation.

Lean on your doctors, articulate your worries, and if they say something isn't serious, take heart.

That's my advice.

Best of luck to you

[Jen827]

Thanks Capt - my submandibulars are acting up this week as well- tender swollen - I’ve very recently started to try to eat again and they think that they are just backing up and getting infected since the saliva doesn’t even come out when palpated.  Fun stuff.  So course of antibiotics and the sit and wait for three weeks until we look at the nasopharynx growth again. I went very dark straight away I think because this has been the first “new” thing.  I’m in the medical field so I tend not to worry about most things but this sent me spiraling.  Thanks for the words of wisdom!

[Bill1]

Thanks Capt...i printed your post and taped it to my bathroom window in BIG print to remind myself to hang in there.....i know i am whining and it may be normal healing time but my Dr. will not see the patients he has done radiation on because he has so many new patients ???  never had this type experience and would like to change dr's but he is so good at his radiation i am stuck with him in the even something crops up.....

one question... did you have a foaming mouth????  i go from foaming .. i mean foaming that's filled with bubbles and wont stop to slime and sludge to totally dry...its a vicious circle all day....at night dry mouth only.... i cant sleep more than 30 minutes without waking with throat and mouth screaming for fluids and tongue stuck on roof of mouth....i am about as sleep deprived as i can take....i do not sleep with my mouth open so its not a factor....

i just wondered if you or anyone has experienced this and i am 4 months +  out of treatment ?  after treatment the Dr. said i would good as new in 2-4 weeks or something like that...right...not the case

thanks Capt....

Bill

[Azjoetrucker]

Bill-

   That 4 months out super desert mouth an Roadkill Breath did ring a bell for me.

  According to my notes I went into a desperate streak abd decided to rinse and gargle with 3percent hidrogen peroxide.  Burned like Hell at first but did alleviate the dryness, Road Kill and Ropey Alley problems till my salivaries began to kick back in.

   Hope this helps.  

Cheers, Joe

[Bill1]

Thanks for the post Joe....i think i will try the burn.... but, are you saying to gargle it STRAIGHT without watering it down???  if so i bet it will burn....let me know if you get a moment before i  try it...thanks......also...how long did it take to get your saliva going ???  was it over 4 months like me ?

thanks

Bill 

[Azjoetrucker]

Bill-

   The peroxide I get is 3% but I think 7% is still being sold.  Yah did mine straight but kept a cup with water/baking soda rinse handy after first try.

   My first salivary began to work more consistently right around the 4th month...and another came online a couple of months later.  I think now three sets are on line (or three locations).  Cancer was on right side so that's still fried.

    I still get RoadKill breath and Desert Dry throat at night but not as often.

   I'd dilute the peroxide if you're still having mouth sore issues.  9 months later the Sore Throat is still with me but no longer affects my eating (though the lympho swelling plays Hell with swallowing anything stringy-as in meat-or not properly lubricated.  Pills are really touch and go and I've pretty much given up all but garlic pills and my nightly Motrin.

   I do believe that the peroxide actually made the sores and the throat ulcerations get better...

  Oh yeah-I can actually drink a beer with dinner now.  A far cry from my gallon a day precancer but not complaining. ...

Cheers, Joe

[Sirdragon65]

Hey Bill,

I am not in post.  Actually, I am on week 5 of 7 on my radio.  I of course have the dry mouth constantly and it used to drive me up the wall at night as you explained.  I bought a humidifier and put it next to my bed with the idea that I would be breathing in moist air and maybe it would help.  I ran it past my doctor and he said not a bad idea.  

It has worked wonders!  It doesn’t get rid of the dry mouth but it alleviates the dry mouth and throat a lot and I can sleep now.  Also, around week 3 I was having pains swallowing.  Not bad but bothersome.  After using the humidifier and drinking aloe Vera Juice and praying, I am in week 5 with no pain whatsoever!  I don’t which one is working but I am very great full at this point.  I can attest the humidifier helps with the dry mouth at night.  I place it right nest to me so I am breathing the moist air.

Hope this helps.

Ernie

[CaptainAustrali]

Hey Mate - if you mean foaming like .. you know, a dog with rabies .. not really.

Head & Neck radiation messes up your saliva glands, no doubt.  For me, saliva production was dramatically reduced, and yeah I certainly sometimes / often have bubbly saliva … but foaming to me is a bit stronger than just bubbly … 

Mucus in the airways is a constant thing, and spitting up gross stuff and bubbles is a routine day-to-day deal, even years later.  
One of the best advices to help with abnormal saliva is to drink plenty of water and do it regularly .. it helps stimulate saliva product a little but it also helps the body feel lubricated and the natural gravity work better (things don't get as clogged up with slime in the pipes).

It's a mess mate, and parking aside any specific symptom, I think where you are is very normal … for me, the experience looked a bit like this:

- first few weeks of treatment:  I don't feel any different, this may be easier than I thought

- then the first hit of chemo:  oh shit, my taste .. its going, I *feel* it .. haha so weird (ahh I wish I'd gone on one last all-you-can-eat seafood frenzy)

- later weeks of treatment:  holy crap, these side effects really are stacking up, the burns, the mucus, everything .. just gotta hang in there

First month after treatment: oh man oh man .. will this stuff ever go away ?  These side effects are intensifying not fading !  This lasts for a few months, the fretful worrying "is this normal ? when will this end??"

The next few months that followed, things started to ease of.

Six months later you're getting a sense of the new normal.

Three years later you're realising that some of the side effects may be companions for life, but you're less stressed about it, you adapt and keep plugging forward.