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

[April-Showers]

Great to hear from you Simon!  Good on you for getting away with the family.....I did the same we headed to the coast as soon as I was able, it was wonderful to spend that quality time as you said as a new post cancer treatment human!  

I feel now like it was a nightmare that I woke up out of 6 months later!  How are you now?  What sort of side effects have lingered on?  I have about 75% of my taste back which comes and goes, I still have limited saliva production causing a dry mouth and I need a bottle of water wherever I go.  Other than that I'm feeling good.  I do see a natropath regularly to keep my immune system up though.

Hopefully things are going as smooth as it gets for Shane, he hasn't been back.   

[Anonymous]

Hi Simon and April - well done for graduating from this **bleep**ty University of the Big C 🙂

I'm just rolling into week 5 of 7, 21/35 radiaton hits done and 2/3 chemo doses, with a mixed bag of side effects. 

I seem to have a little of everything but none of them chronic at this stage and manageable (most days).  Worst of it is the tinnitus and lethargy at the moment, the piercing buzzing sounds can be a real distraction and very uncomfortable.  My mucositis has actually got better since week 3, I think because I simplified the mouth care regime by sticking to basic salt rinses and occasional Biotene, with soluble panadol a couple of times per day.  I've gone away from the fancy xylitol melts, gums, rinses and other tricks and figure I'll leave those for after treatment ends and all I've got is the dry mouth to deal with.  The combination of distorted taste, mucositis goo and pasty feeling mouth makes eating unsatisfying but I can still get down most soft solids - plenty of scrambled eggs, shepherds pie, smashed avo n feta by the spoonful, porridge, that type of thing.  I have also been topping up my intake with the odd Fortisip via the PEG if I miss a meal or snack, which I think is why I've lost only 2kg since starting treatment.  My shape has changed a bit though, everything seems to have slipped from my shoulders to my love handles 🙂

The other things are cosmetic at this stage, crazy high rear hair line and thinning up top too, and the skin around my mouth is a bit dry and looking old.  I'm on a trial for StrataXRT which is a special ointment @ $250/tube (though I'm getting it free) that seems to be holding back worst of the radiation dermatitis but my neck is still getting scaly and dry in places.  No open weeping or rawness yet though.

I'm working part time a little, just desktop work from home in between treatment sessions, though the hours per week are sliding away as I'm struggling to get through the afternoons without a break.  I enjoy the distraction though and will keep at it while I can.

That's about size of things for now, thank you for checking in and know I'm envious of the breaks you got in.  My partner just turned 50 and I do too the week after treatment ends - our original plan was to spend the month between our birthdays overseas but that plan has been pushed out a little, but our turn will come 😉

Shane

[April-Showers]

HI Shane,

Good to hear from you especially reading how well you are journeying!

If you are in week 5 and still able to eat soft foods you are doing exceptionally well!  Good on you!  Try to eat solids for as long as you can and as you would have been advised protein is key.  I know its been hot (well here in Melbounre anyways!) but lentil soups are also fasntastic while you are still able to eat/drink solids.

For your skin keep moisutrising it I was given sorbalene by the rad dept. and later as the burns started (which the last week of treatment and beyond) the mixed a local anaesetic into the cream to numb the area a bit.

As the pain in the throat escalates you can also try a local anaesetic spray its called difflam, I would spray that into my throat and was then able to eat soft stuff or by the end get my sustagen down.  The pain in the throat will intensify but you will have many options about how to continue nutrition.  You have the peg so that does makes things less stressful in that regard.

Good on you for trying to keep some hours up at work, I was studying and working at the time and I found as I wasn't able to continue working, my study provided me with an outlet to something "normal" in life.  It gave me some kind of hope.

Keep positive Shane and just take one day and a time, youwill get through and before you know it they will be giving you that mask to take home!

[Anonymous]

Hey guys - here I am deep into Week 6 and 80% of the way through.  Things are starting to really stack up but in the scheme of things I'm doing okay.  I got moved across to Targin this week which has helped with getting food down without quite so much pain, and also keeps the #2's happening which is nearly as important as eating 🙂 LOL

The StrataXRT skin treatment seems to be holding up though my neck is getting pretty raw, but no open weeping yet (fingers crossed, still 7 blasts to go).

Next Monday is last HD Cisplatin round so the side effects of that on top of the cumulative radiation stuff will be testing.  But there be a light in the distance now 🙂

I'll let you know how I'm going when through back end of treatment, wish me luck....

[CaptainAustrali]

I wish you seven different flavours of good luck.

It sounds like you're still managing to eat, which is really good at this stage of the game.  Have you experienced much in the way of dysgeusia ?  (food losing taste, or the worse kind where food tastes somehow rancid)

In any case best of luck, fingers crossed for the treatment being a complete success.

I'm in for a colonoscopy tomorrow (after treatment there's a vigilance phase where you get looked at every 6 weeks for signs of recurrent cancer, and they also fast-track any other investigations like blood where there shouldn't be -- but in my case it's just a slow healing injury from the chemo-constipation, pretty confident).

But ugh, these diarrhea-inducing pre-colonoscopy potions are ... AWFUL

[Katekat]

Hope all goes well today @CaptainAustrali 

[Anonymous]

Hey again

Woohoo, tomorrow is the 35th and final 2 Gray radiation blast, and the third HD Cisplatin chemo infusion was also this week.  

So how does the score look:

- nausea, about the same as the past fortnight, maybe a little heavier at time but without the hiccups and heartburn of the first round.  Bearable if I keep out of the sun and keep something in my stomach.  I haven't vomited yet but have close some mornings (see dysphagia below)

- pain, general mouth and throat pain is milder but there are two very nasty ulcerated areas that are punching right through two layers of pain killers.  Because my tumour is in my tongue muscle, right beside my left molars, every movement of my tongue sees the point of intense radiation treatment rubbing on my teeth,  So all seems fine when sitting quietly but trying to speak or eat ramps things up quickly.  So far riding on a base layer of Targin 20/10 with liquid Endone to get through the peaks, and daubing Xylocain Viscuus directly into the uler when all else fails.

- weight, so far I've only lost 2.5kg of my 75kg starting weight.  I was already fairly fit and sat at upper end of the "normal" BMI for my height, so I didn't have much to lose before dropping into underweight territory.  Although I despise the PEG it has undoubteldy enabled me to supplement using Fortisip when eating normally gets too hard.  I'm still getting down my porridge each morning, and a bit of custard or yoghurt, but majority of input this week (and next I reckon) will be by PEG.  If you are offered a PEG, take it, you don't have to love the things but I'd hate to be trying to do this treatment on pain killers and determination alone...

- mucositis, better this week than last.  I seem to get less of it during chemo week, perhaps because of the additional fluids they pour through you, but maybe also an effect of the drugs?

- dysphagia, not much change since week 3, and not the horrible rancid taste you mentioned.  I find worst of it is the taste of stale mucositis goo in the morning, and trying to cough it up in the shower is literally gut wrenching.  Most of the time its the standard cardboard soaked in vinegar taste.

- tinnitus, buzzing away at the moment.  I get it worst at back end of chemo week then tapering away.  Some sounds just amplify the effect, sunny day cicadas are a killer, as is driving in heavy rain...  Not effecting sleep luckily as the effect dims when in quiet surroundings

-  skin, has just peeled away a gritty brown layer of dead skin cells and the fresh pink skin is holding up okay.  I've got lymph nodes on both sides of my neck plus the central tongue tumour, so my radiaiton effects go from my top lip down to my collar bones and right around the back (see hair below) at about ear level.  Worst of the dermatitis starts under my jaw bone and goes down each side of my neck.  No weeping or breakdown yet and less stinging and soreness than when the old skin was starting to granulate and peel away.  Remember, I was on a trial and using a product called StrataXRT, which is being compared (very favourably) against Sorbolene and the usual brews.  Its ~$200/tube if you have to buy it and you'll need three tubes to get through, so hopefully they get it on the PBS as a result of this trial.

- hair, by end of week 3 I'd lost all facial whiskers and my head hair due to radiation from my ears down to my collar bones.  The tuft that's left has been thinned quite a bit by chemo but is hanging in there.  I'm told most of it will come back but with less vigour than before.

From here I've got best part of a year still to go on the Pembrolizumab immunotherapy trial which will mean 3-weekly trips to the clinic for a blood test and infusion.  A bit of a committment so I hope I'm on the good stuff and not the placebo....

Best of luck with the colonoscopy Simon, and thank you for riding shotgun on this **bleep**ty little excursion 🙂

[CaptainAustrali]

Buddy, in case it helps to see a snapshot of things less than 12 months down the track, here's how things stand with me now:

I had moderately unpleasant external burns:  pain, couldnt turn neck .. that was all good after maybe 2-3 weeks.

I had woeful mucositis, terrible, spitting and vomitting all the time:  I now have phlegm accumulate throughout the day, and do spit quite a bit, but it's really just a new normal.

I developed tinnitis after the first cisplatin:  it's gotten worse and is a constant, they say its a rest of life deal, but if you learn to zone it out you can forget it's there.

All taste became rancid for me, and I could not eat via mouth for several weeks:  I can eat pretty much anything now, although some foods require water to help it go down as they dry mouth is ongoing.

Loss of taste:  on average its maybe 75% back.  Some things continue to improve .. some things may never improve.  Icecream for example tastes pretty much as it did before .. but things like .. say fast food fries .. they taste like .. potato.

Note: accupuncture helped with my dry mouth.  There are scholarly articles supporting efficacy, although it's open as to why it works, most doctors suggest it's not effective but the studies seem to state otherwise.  If you have bad dry mouth it's worth looking at in my opinion.

Good luck mate .. don't be bummed out that after treatment the problems may actually intensify .. it gets better in the coming weeks.  Three months down the track you'll be feeling mostly normal again.

I hope you get an all clear.

[April-Showers]

Wow, you are doing remarkably well!  That fact you are still able to eat so late in your treatment is just amazing!!  Good on you!

Simon has given you a heads up on what's to come, but you sound as on top of it as it gets with what you are facing.  Just keep thinking one rad down one rad closer to the finish line.  As Simon has mentioned once you finish treatment be patient with the slowness of recovery, it just takes time.  It was the one thing that I really wasn't prepared for.  I was expecting to start recovering immediately.  I just didn't happen.  It takes time.  The first thing that will pick up is the external damage, the burns etc.  Once that heals which is around a couple of weeks then internal healing will start.  But everything is a small price to be given the news of cancer free at the end of it all.  You will recover and as Simon said around 3 months out you will be feeling much better.

All the best for the countdown!

[Anonymous]

Hi all

Quick update on life at 3 months post treatment...

As a recap, I had T4N2cM0 base of tongue SCC that was P16+.  Basically a thumb sized tumour buried deep in my tongue muscle and lymph nodes affected on both sides of my neck

We got through the infamous few weeks of hell after last of treatment, a period which included my 50th birthday and Christmas.  Not much to do but keep my head down, maintain nutrition and deal with the side effects.

Come January I started to steadily improve for a few weeks and ended up virtually independent of my PEG, eating selective foods for most meals with the help of an Endone or Panadol (sometimes both).  Skin cleared up really well, mucositis was present and still caused some gagging through the night.  Tinnitus unfortunately ever present but not enough to disturb sleep, mainly a problem for communication through the day in the car or noisy locations.  Dry mouth but a hint of taste returning which helped at meal time, nausea almost gone and tiredness also less of an issue.  Dropped off Targin an only needed adhoc pain relief for meals.  Head hair and whiskers even starting to reemerge.  Started to work part time from home.

Then the wheels fell off...  For a fortnight at end of January I felt things sliding away.  The general rawness of mucositis and radiation damage was replaced by intense local pain at my tumour site (base of tongue).  As mucositis disappeared it was replaced my an extremely dry mouth, especially through the night and the usuals like Xylimelts and Biotene didn't offer much help.  My radioligist and medical oncologist both examined me sympathetically but put it down to a late bloom of chemo-rad side effects.  Back on 20/10 Targin for pain, plus the laxatives and other meds that go with ramping up pain relief.  Also Diozole in case it was a type of thrush infection.

By the Australia Day long weekend I was really suffering, worse than at any time in or after treatment.  My throat had swollen internally to the point I was waking up in the night unable to breath by nose and tight by mouth - lympodaema (swelling) of my face and neck to the point I'd lost a defined chin - difficult to swallow water without aspiration which made it nearly impossible to swallow tablets.  On morning of Sunday 28th Jan I'd had enough after a sleepless night of laboured breathing and pain, went to Emergency at my treating hospital (RBWH) where the ENT Registrar admitted me on a course of steriods and two different anti-biotics, all by IV - I ended up inpatient for a week until things improved enough to start eating again and go home.

A tapering course of drugs ended after a week and the symptoms started to flare up again - but they quickly put me back onto oral equivalent medication that has me stabilised but still a fair bit of local pain.  After a few endoscope examinations and some probing the call is - combination of my large original tumour and its location, which has since died from treatment, has caused a large hollow ulcer at back of my tongue that is slowly rebuilding with new muscle tissue and exposed nerve endings so it is easily inflammed.  This cavity easily catches food bits and is therefore susceptible to infection, and if food lodges in there its hard to flush out because of the sticky "slough" goo also present (sorry to be graphic :-).  I've stayed on PEG feeds for a fortnight to give things best chance to clear up and am definitely on the improve now, but this wasn't a set back I saw coming.

So I guess my message is, be positive and forward looking but be vigilante - if you think things aren't right be a bit pushy.  The Doctors and staff in oncology are simply amazing, facing dozens of our cases each day, but sometimes its easy to write off our symptoms as "part of the chemo radiation repair process", when I presented to the ENT team via emergency they took a different view and realised that what I was suffering was related to cancer treatment but had its own challenges, and they offered a more targetted treatment.

In two days time I go in for my 3 month CT/PET to see if I'm cured.  Unfortunately what's left of this infection may give a false positive at the tumour site but at least they can see if the lymph nodes have been cleared away and there is no other spread.   Wish me luck, I'll get back to you with how that goes 

🙂