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

[Katekat]

Thank you for updating us on your progress @Anonymous!

Wishing you all the best for your appointment today 

[Alan22]

You have had one tough run. Great to see you putting a positive spin on it. Stay strong, you will turn this lemon into a lemonade in the long run👍

[mahootna]

I had tongue cancer, confined to right side only. They found aggressive cancer in one lymph node so had to have 36 radiation treatments. Initially I had the same problems as you but avoided having a PEG, just. Now 4 years later my taste is just returning to the point where I can distinguish salt and sweet. Doctors said that was unusual to take this long. The mucositis will never completely heal as the saliva glands have been damaged. The thick ropey mucus will lessen and the need to cough it up will go. This took about 6 months for me. Eating is still an issue as without the saliva there are many things I can't eat, like bread. Mostly have semisoft foods with plenty of soups and casseroles. The joke here is "do you have a side order of gravy with that" or a side order of custard. There is one side effect that I struggle with and that is my body over heating for no reason. It has been suggested that the hypothalmus was compromised during treatment. My ENT doctors don't call these things side effects they say it as a result of having the treatment.

[Alan22]

Mahootna, Sorry to hear that your taste has taken so long to return. I had radiation treatment for tonsil cancer in 2010, taste came slowly back over one year, and I would say got to about 75%...I wouldn't make a food judge. Mucus OK and no overheating, but dry mouth..I took a test at the dentist which calculated saliva at 25% of original, so can relate to your gravy story. I mostly need to eat with some form of drink, I find milk the best ( I add coffee ). Regardless of the ENT Doctors comments, it is a side effect of treatment. semantics.

[CaptainAustrali]

When I originally started this thread in January 2017, I had just finished 7 weeks of radiation and three rounds of chemotherapy for an invasive and aggressive head & neck cancer (starting at the tonsil, but abutting the jaw, soft palate, and the local lymph nodes).

I wanted to understand if the (horrible) side effects I was experiencing were common, to kinda guage where I was at, recalibrate my expectations.

I guess it turned into a kind of side-effect diary (with some friendly chat and comparisons in there), and I realise that it's been viewed more than 5000 times, so it may be useful to folks with a similar disease profile to mine, so I just wanted to give an update on one major new thing that I wanted to add into the mix, as I've learned it's statistically relevant to H&N cancer sufferers:

Radiation Induced Hypothyroidism

OK, so basically, with lymph nodes targetted, there's apparently a pretty decent chance that the radiation can affect your thyroid.   I can't say if the impairment is temporary or permanent, but at least hypothyroidism is a well understood condition and managed effectively with medication.

So now, 2 years out of treatment, let me update briefly on my personal side effects in case it's useful to someone researching their own condition (sorry matey, cancer is a shit-show):

Mucositis:  it's 2 years and I still spit up chunks of mucous, but severity has gone from extreme/profound (during and just after treatment) to a minor annoyance.  I wouldnt call it mucositis anymore, but rather due to dry mouth and an overproduction of mucous, there's an ongoing sensitivity.

Taste:  bummer, but it's not come back fully.  French fries ?  They taste like potato, just .. potato.  Some foods came back like 90%+, but many tastes are pale imitations of what they were before.

Dry mouth:  it's a lot better.  You can't swallow some foods at all, and risk having an embarassing lodgement in the middle of your throat, but carrying around some water, it's very manageable, and it doesnt really disrupt sleep.

New issues:  don't know why but I pee constantly.  Prostate is OK.  I wake every 2-3 hours at night needing to pee.  Coinciding with the chemo, my vision started to deteriorate and now I can't really manage fine print without glasses.  (May be old age, but pre-chemo my vision was 20/20 nil issues).   Can get occasional spasming neck pain due to inflammation / nerve damage.  Chemo-brain is a thing!  I feel as though my thinking-meat has reduced in effectiveness, although hey, lack of sleep can do that to you as well..

and ... Hypothyroidism.  Daily thyroxine when you get out of bed, and you're pretty much good to go, BUT (and this is the main reason for advice), if you spot it early - you can avoid the slowing metabolism and inevitable weight gain.  I've put on like 25 kilos over the last 2 years, despite having very little enjoyment from food 😕

So .. yeah, my advice, 6 months out of treatment, get a blood test and ask them to check everything ... including specifically the thyroid.

[April-Showers]

Hi there,

This thread was a life line for me....!  I had just entered treatment last year when I came across it and I tell you the info and support was precious.

I am almost a year out now and I can say ditto to what you have shared CaptainAustrali....HOWEVER, my thyroid has never gone above "preclinical hypothyroidism"....so I am fortunate in that regard no meds.  I did rush off to my natropath and I am taking some high dose herbs, selenium and other supplements to support it.  No meds....yet!  I have been preclinical for around 6 months now.  

I have however hit the gym and following a pretty strict diet....no weight gain.

Taste comes and goes, saliva production still around 75% still need water wherever I am, which is challenging at times as I am a teacher.  I find my voice gets tired very quickly now, all day teaching can really take a toll on my vocal chords.  Other than that I'm doing well....so long as those scans stay all clear can't complain!

Great to hear from you and that all is doing well.

[mahootna]

Thanks for replying, yep I am on thyriod treatment and may have to increase dosage as my last blood test was a bit suspect.  I am now officially in remission as it has been five years since first diagnosed.  My taste buds have still not recovered completely and of course most on the right side are gone.  I suffer in the cold due to the area that received the radiation seizing up.  some days I have trouble opening my jaw wide enough, great when at the dentist getting treatment.  Also the flap in my tongue gets cold and does not warm up even with a hot drink.  I have developed a sensitivity to salt and can no longer enjoy anything with even a small trace of salt.  No more chinese for me.  I am lucky in that I have had wonderful support from my GP clinic and they are constantly monitoring me.  I have blood tests every three months to check thyroid, blood sugar and also magnesium levels.  Depleted magnesium was another side effect I had after treatment but I know the signs and take a powder supplement when low.

There are some things that never return and when cancer strikes the mouth and throat area there are a lot of little things people take for granted that are affected.  Most people have no idea just how important saliva is to able to do many simple things.

The other thing that happens to me is that my nose my run or tears flow when I am eating, especially if I have to chew a lot.  One of the doctors said he had other patients experience the same thing.  
Apparently the area of the brain that tells your glands to produce saliva is the same for nasal mucus and tear production, so when one doesn't happen it makes the others.

I struggle still with not being able to eat many things and having to constantly explain to people why I can't have even sandwiches.

Now I try to focus on my beautiful grandaughter who just turned one and give thanks that I am here to enjoy her.  My other reason for fighting on is that I am full time carer for my husband of fifty years.  Hope that you continue to make progress and one day be in official remission.

[CaptainAustrali]

Hullo Both

That remark about the brain recognising low saliva and triggering additional production (but not differentiating from mucous production) is really interesting - will have to read up on that.  Because I certainly think that since the initial mucositis and well into recovery, I'm overproducing some pretty gross mucous.

April- I no longer carry a water bottle around, saliva continues to improve over time for me, rather than plateau out ... but for a person who speaks professionally, it must be really tough.

I've recently been taking singing lessons, and start to understand that it is a long-term impairment on your voice.    The lessons are because my ten year anniversary is approaching, and I have a surprise dinner planned (she will think we are going to have a low-key dinner at a restaurant, but friends & family and some members of the public will be there).  I'm going to serenade her in the middle of the evening in front of everybody, ha-ha.

"I don't know much, but I know I love you".

The singing lessons are .. well, I want to have a bit of swagger when I do it ... I'm fine with the performance being cringy - but I want them to be cringing due to emotional intensity awkwardness, not the horrendous quality of the screeching 🙂

But yeah, the impaired saliva for a person who speaks/sings/raps/recites poetry every day would be a real drag, my sympathies.

One thing though - for any future folks who might be researching side effects and the waves that they come at you - at some point there's a chance that you'll be planning ridiculous stuff like cringy singing in public, with little or no thought to cancer.

Because another side effect of cancer is anxiety, contamination of hope - but I think that one comes out of the gate strong, and starts to slowly erode over time ...

[April-Showers]

Has anyone had success with acupuncture?  I did do one round of it but it was extremely uncomfortable....I couldn't bring myself to do it again.  I have heard there is a lot of research saying it is helpful for increasing saliva production.  ATM I will sit tight and carry my water wherever I am .... especially in the classroom!  

Sounds like you have some fun memories up ahead captainaustrali.....after cancer life takes a new meaning don't  you think?....I know I have become grateful for the small things and precious memories and times with family mean everything to me now.  Yes you are right one day cancer does disappear into the distance but somehow it never completely leaves my horizon.....maybe after I reach my two years out (February 2019) I will see things differently....especially as those ever important stats reduce dramatically!  Has to be a good thing to be a massive step away from a horrendous unthinkable unimaginable dehumanising phase in our lives.

Onwards and upwards!

[April-Showers]

Mahootna,

Sounds like you are doing a fantastic job and are in a very positive state of mind focusing on the positive things around you like your granddaughter....how beautiful for you!

I do hope your after effects ease off .... I know when we look at the bigger picture of what we have come through it is all a "small price to pay"....stay positive as it sounds like you have a lot of family around you that need you.