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

[CaptainAustrali]

Hey April

My first advice - Doctor Google and fools like me .. we're only good for perspective, take it onboard but don't get upset or anxious by it.

For me, the PEG was invaluable, because the mucositis (thick horrible tasting phlegm) was just awful.  That said, everyone has different mileage - your side effects may ramp up faster but not reach as serious a level as mine.  You could approach it day by day, and if you get to a point where you cant take your nutrition/hydration by mouth, get either a PEG or a nasogastric tube in.

Since treatment is already underway, you might as well wait and see - mine was put in prophylactically (before treatment as a precaution) and I'm grateful they did it, although I was worried at the time.

What you don't want, is to wind up hospitalised with malnutrition and/or dehydration.  Monitor your intake pretty carefully, consult with your dietician, and make sure if things get tough that you escalate for advice.  Intubating via nose is awkward and can make you feel a bit iffy (because everyone can see it unlike a PEG), but they can do that reactively if things get tough, and there's no surgery.  (But I understand it's also a bit more awkward to use than pushing feeds in via a PEG)

Just this past week, I'm able to drink a few litres a day, so the formula I normally push down the PEG, I can take by mouth .. so I'm going to give it another week or two and then get the PEG yanked out .. but I'm so happy I had it.  At the peak, the symptoms were just ... yuck. 

On pain and pain management .. I'm pretty stoic, I have a somewhat abnormally high tolerance for pain (according to the doctors) .. but yeah, after all the radiation the throat gets pretty raw and torn up, and it takes several weeks to heal and feel better (for most people).

For most of the time, I took panadol & neurofen, but they did prescribe stronger meds which I used for a few weeks post-treatment (Endone & some morphine based powder, I can check the name if you need)

Suggest just keep eating by mouth as long as you can, and when you start to find it tough, ask for urgent advice from your care team.

Also:  my advice would be different to the dieticians ... they say TWO things that I feel are not scientifically founded and potentially even negligent:

1) FORCE yourself to eat .. mind over matter

2) you MUST maintain weight during treatment

My comment on both:

1) Dont' force yourself to eat, if you stop entirely, YES, you risk losing or undermining your swallow reflex, but there are exercises you can use to maintain it .. and forcing through pain or revolting taste can actually cause more internal harm, distress, vomitting .. and also food aversions if you are gagging stuff down, which are very difficult to cure years down the track.  Don't force yourself, if you struggle to eat by mouth, look at intubation strategies.

2) Must maintain weight:  I'd amend this to "must maintain a healthy weight" .. if youre a bit overweight, there's NOTHING scientific supporting that weight loss during therapy is a problem.  Maintain nutrition and hydration, absolutely .. but don't get stressed out and anxious if you lose a few pounds just because some food nazis are standing over you.  If you're chubby or obese, use those extra calories to buffer you during the difficult time when you struggle to get the full amount of calories.  The priority needs to be:  hydration, protein (for healing), nutrition .. calories is only a priority if you're at an average weight or below.

[April-Showers]

HI Simon,

thanks again for the insights.

Today at weight in I dropped another 1 and half kilo since last week.....BTW I started with extra weight so that is a plus.  The dietitian saw me today and is monitoring me closely giving me new ideas about how to get more protein in.  I am able to get water down and till now have no problems with hydration, I have actually gone on to natural mineral water and its working wonders in breaking up the phlegm hanging around my thoat.  I made a plain lentil soup without my usual spices onions and garlic (which I can no longer tolerate), I added in some zucinni and carrots pureed it all and I managed to get two large cups down....very very slowly!

Thanks for the tips on the peg....I really really don't want another op right now....I know I maybe in a situation where it is unavoidable but I really want to do the best I can with a liquid diet and keep up my fluids as long as i can.  Things are definately escalating no doubt....this week and the coming will be decisive.  I can only give it my best shot what more can I do...whatever happens happens.

The obstcale for you right now as far as drinking and liquid diet is still the soreness in the throat?  When you talk about taking meds post treatment I am like NOOOO!....I am so looking forward to gettng these 30 rads over and behind me like life begins after.  From what you are saying things are still on a downward slope post treatment.  Of course I am not expecting to be leaping tall buildings a day out but shouldn't the healing and recovery start once rad stops?

ATM I do get the feeling of hunger....like I feel like eating...well drinking something.  I found frequent small drinks of soup or sustagen is working.  The problem those quantities that I am getting in are getting smaller.  This is what the dietitian enphasised today....but I was like...I just can't.  So I hear her but I know what I can do and what I can manage.  I use her for ideas on how to get better quality drinks in.....she knows my views on peg and is really trying her best to work with me to achieve that.  I really hope I can.....but its not the end of the world if I can't.

You must have a high pain threshold!....wow...I ditched the morphine and spoke to the Dr today about panedine forte...he is happy to try that.  Your suggestion of nuerofen is a good one....but isn't it aspirin based?...it thins the blood?  I will check that one out though and see....I need a plan of action in hand so if the pain ramps up I have something.

Yea I hear you about maintaining weight....the dietitian said the same to me she doesn't want to see any weight lose....I was like well I've got it to lose it so what 's the problem.  She said in treatment maintaining weight helps recovery.  Although I think we are far better positioned than very underweight or average weight people are...so I absolutely agree with you.  Its all about hydration and protein....that's what I am keeping tabs on.

When did you start to experience the redness and skin problems?  I am pretty anxious about that...I am pretty fair skinned and don't see alot of sun so I am  a bit worried about that aspect of the side effects.  I know everyone is different but its always good to get a heads up.

April 

[April-Showers]

BTW Simon how old are your kids?....

[CaptainAustrali]

Hey Hey

My kids are ages 4, 6 & 7.  The six year old is on the autism spectrum, and the 7 year old turns 8 in April.  They're a bucket of fun and a big responsibility, and my end-of-life worry is exclusively focussed around what happens to them.

Post Treatment:  honestly, I kind of had a similar approach .. let's get through the tunnel and then RECOVER .. but it doesn't work that way.  The radiation damages the stem cells of healthy parts of your body alongside the cancer (the mucosa lining the inside of your throat, for example), and it takes longer for that to heal.  In terms of my expectations (based solely on my own experience), I'd be mentally prepared for:

- the first 1-4 weeks after therapy to be worse than therapy itself

- you will break through a 'suffering barrier' from which you'll feel OK and better each day

- in terms of when pain meds are most required, for ME the need for pain relief was greatest in those first weeks after therapy

Problems during therapy:  although the chemo made me feel a bit gross, for the most part I had no major problems during the therapy period until about week 5.  (A bit of tinnitus and nausea from the chemo, and loss of taste, but really nothing too awful).  At that point, I developed a rancid taste dysgeusia .. where everything in my mouth, including saliva, tasted like it was rotting .. somehow contaminated ... and slowly increasing mucositis (thick, ropey mucous that made me feel like gagging if I would lie down or swallow - needing constantly to spit it up).  Weeks 6-7, I was carrying around one of those hospital vomit bags constantly, filling it with gross spit all day long.  I still have a little bit of that now .. but 6 weeks out of therapy, it's almost entirely gone, and I can sleep through most nights without barely having to spit.

My experience with burns (internal & external):  I didn't really get problems until around weeks 5 & 6, and it was quite minor at first .. just stiffness .. but it quickly escalated (exterior burns I mean).  In week 6 and 7, I needed dressings every day, and intrasite gel applied over the burns .. but it also healed quickly, by 2 weeks out of therapy, skin is as clear as a baby's bottom.  Internal burns are a different story, I was getting sore throat pain from around the week 5 mark through until present day .. but it's mild now .. no pain relief thismorning, no panadol needed .. the worst point was the fortnight directly after therapy.

Other random stuff might be helpful:  now, I can't say for sure if it's peripheral neuropathy or muscle cramps due to mineral deficiency (I suspect the latter), but after my last round of chemo, my legs swole up like an elephant, I was retaining water and looking WEIRD, but it went away after a few days .. however, in the weeks that followed, I would be woken in the middle of the night with ghastly, horrible cramping in one or both of my legs (sort of the back of the lower leg, the calf).  The kind of cramp that I think everyone has had some time or another --- in america they call it a "charley horse" I think .. a really bad acute muscular cramp that eases off after a few seconds but is quite intense.  Anyway, the chemo doctors had warned of a thing called peripheral neuropathy (which I understand relates to reduced circulation in the extremeties and you can also get it from diabetes) .. but I self treated this, because when I had it once or twice in the past it was apparently due to insufficient sodium or zinc in my diet ..so I started taking a multivitamin, zinc tablet and some fish oil and it's gone away (I was waking every night, sometimes more than once a night, with intense pain).  So it might be worth thinking about a multivitamin as a precaution.

[April-Showers]

HI there,

You have had chemo and 6 weeks of radiation.....You have age on your side Simon, stay positive.  Your little ones are close together age wise, so you guys have your hands full!  What do they know about what is going on with you?  Just Dad's been sick?  The 8 year old may understand more.  I have an 8 year old too, she knows I'm sick but the full scope of the "c" word she hasn't been exposed to yet.  My older boys (13 and 15) we spoke to and they understand more, which is harder.

Looks like the redness is beginning, it feels so itchy I could scratch it raw!  I've got some cream mixed with local aneasetic to put on it.  It is reassuring to know the burns heal quickly, I've seen some of the other patients with some really really burnt skin.  

Did your tinnitus go away?  I had mild tinnitus before all this but it has gradually become worse with each rad.  I really hope that subsides some days it drives me nuts!

Had a look in my mouth today.....what a sight!  I don't know how I am still getting liquids down I really don't.  We shall see for how much longer....each day the back of the mouth and the throat just ramps up a bit pain wise.  

Thanks for your insights into post rad I have definately taken them all on board.....much to my disapppointment.  I am glad you told me though there is nothing worse than stting yourself up for a fall.  At least the travelling to the hospital every day will be over and facing the mask and the treatment will be over....its one small positive amongst so much crap!

Did you lose your voice at all?  I feel my voice getting sorer and sorer each day.  I am trying my best to preserve it which is very hard with four kids!....:)

Have you tried natural mineral water to break down the phlegm?  I started it this week and have found it really effective, it just moves it down and away.  I also use a nebuliser that also helps to break things down in the throat.  I use it before treatments and also at home when I feel there is too much of a build up.

You said you still have a sore throat until now.....has it improved since finishing treatment?  Are you managing to actually eat anything yet?  Or drink something?

Yes I was on quite a lot of vitamins pre op....but I was told to stop them all for treatment (the Drs).  Apparently they can interfere with chemo.  Now that I am not having anymore chemo I will check again if I can continue them.  Just immune system building stuff, Vit C, tummeric, etc etc.  I will check though thanks its a good idea to get on to a multi vit at least.

Hopefully by the time you go back for your scan in march you will have made a good recovery Simon.  Hoping that you get good news and can put this all behind you as one of life's tests.

April 

[CaptainAustrali]

Hullo Again

I had 7 weeks of radiation, and three infusions of high-dose cisplatin.  (The chemo requiring an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).

On that, yes, I'm still getting tinnitis.  It's intermittent and was much worse directly after the chemo - but it's still there .. I don't know if it will go away fully or not, but I hope so.  (If not, small price to pay to fight the cancer).

I never lost my voice, but when the mucositis was at it's worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillian or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.

(And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm) and other bits and bobs all mixed up by a compound chemist.  You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis.  I couldnt get my hands on any in time to help me.

I stopped eating around week 4-5 of treatment, mostly because of the rancid taste dysgeusia.  Everything in my mouth tasted contaminated.  (A side effect of the chemo).

It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).

Yes, I still have a sometime sore throat.  Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body.  It's worse than a normal wound or injury, because the treatment actively attacks the stem cells (which normaly help you heal), so the wounds can be severe and slow to heal.  But my pain is very manageable now .. just 2 panadol today.  It was at it's worst the first 2 weeks after treatment.

When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst).  It's great to no longer have to go into hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty-much bed-rest and just ticking away time, before you start to heal and feel better.

For me, it went something like this, over the span of treatment:

Week 1:  first round chemo & 5 rads (felt fine, some nausea from chemo)

Week 2:  (5 rads) minor tinnitis onset from chemo, some vomitting, radition fine

Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

Week 4:  (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomitting from chemo

Week 5:  (5 rads) noticable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

Week 7:  (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

Week 8:  (first week post treatment) awful awful suffering, vomitting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

Week 9: (second week post treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturising cream).  Pain lessening, but mucositis still awful, nigh cramps in legs

Week 10: (third week post):  exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

Week 11: (fourth week post):  turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was.  Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

Week 12:  (fifth post):  mucositis backing off more, can now take most nutrition and hydration via mouth and thinking of getting rid of PEG.  Pain is manageable, dont require anything more than panadol.  Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels

SO ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully it gives a little perspective.  Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily .. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself.  Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.

Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick" 

[April-Showers]

What a journey Simon.  7 weeks rd and 3 chemo.....here I am whining about 6 weeks of rad and 1 chemo.  You are a one strong person.

Chemo tore me apart.....I just can't imagine how I would have faced 3 doses.  Especially the cisplatin....I got the carboplatin due to my concerns about hearing lose.  They said the nausea isn't as bad too with the carboplatin but even still I went down with it.  The extent of your side effects were surely influenced by the chemo to a greater or lesser degree.  

Today was a big day.  I had a PET scan post op back in December and nothing lit up in my neck but a small spot on my pancreas lit up.  Today I had an appointment with the surgical dept about it.....it's a whole other ball game for me.  I have to do an MRI so they can characterise it either cancer or not.  The whole thing has destroyed the fight I had facing the rad each day. 

I've got the MRI on 9 March....from there they will decide, the first line of attack will be surgery if it is cancer.  Something I really don't think I can face.

Trying to take one day at a time ATM is hard.  Have you had any experience with PET scan?  I've done a bit a search and apparently they are famous for lighting up for no reason.  

[CaptainAustrali]

Ah crap, sorry to hear about it.

On PET scans, my experience so far was just the initial diagnostic step, where they confirmed the tonsillar cancer and adjacent lymph node cancer (and suspected a tiny amount in the opposite lymph node).

I have a PET scheduled for 21 March, and my understanding was that it's the definitive diagnostic tool for cancer - and the test can result in one of three outcomes:

All Clear:  nothing lights up, also called "NED" (no evidence of disease).  Fingers crossed for this.

Uncertain:  they see something but arent sure exactly what it is (as you say, it might light up for different infections or other problems), in this scenario they'll watch and wait, and re-test after an interval (I think about 3 months)

Cancer Detected:  if they detect cancer then they put together a treatment strategy *

(* in my case this'll be a problem, because I've had all the radiation I'm allowed and chemo isn't directly effective (apparently) against head & neck cancer, it's supportive/adjunctive - so if they still find something, I better hope surgery is an option!)

In your scenario, it sounds like they're pretty confident that it's a malignancy, confident enough to need to form an action plan rather than letting it sit in the "watch and wait" category.

Honestly, I wouldn't get my hopes too high about a false positive - hey, it's possible, but I think the best thing you can do in this scenario is pose the questions to your medical team and if they are concerned, move forward on the basis that they are right.

That said, until the 9th of March .. you just don't know, so you need to protect your mental health in the awful month of waiting ahead.  Maybe resolve to not go online and read about cancer stuff, focus on family .. I don't know what to suggest, I just know that waiting is a special kind of hell that is completely different to tolerating side effects of treatment, but equally hard to face up to.

Sorry again to learn about the continuing fight..

[CaptainAustrali]

One other comment - I know a person fighting cancer at the moment, for whom their treatment is considered "palliative" (to reduce suffering or improve quality of life - ie deal with the symptoms but cant cure the disease).

He has lung cancer, but also apparently in his liver and I think his pancreas.  He was given weeks/months to live (about 6 months ago).

He looked at clinical trials, and is taking an immunology oriented treatment, no more destructive chemo.  Apparently the cancer in his body has reduced 80% and they are cautiously calling it "in remission".

So you could ask about clinical trials and immuno-focussed treatment methods, maybe even in the interim while waiting for the MRI, so if they do confirm pancreatic cancer, you can make an informed decision about what to do (perhaps both surgery AND immunology?)

Anyway thought I'd mention it in case it's worth a think.

[April-Showers]

HI Simon,

Me again....:(

5 weeks completed with my last week beginning tomorrow 5 rads left and I'm done.

So the mucositis has set in!....I had no idea that what you were referring to was thick disgusting yellow mucos!  I thought it was just the thick phlegm/saliva in the mouth.  Sustagen is getting harder to get down due to it as it is a milk based drink.  I need to put down 4 litres a day to meet the requirements and I tell you I'm struggling on with it each day.  On Friday my Dr menioned the nasal feeding tube just wanting "put that out there" as an option if things get too hard.  Each day my main concern is just getting enough nutrition down to continue mouth feeding.  How much did your sore throat ramp up week 6?...I'm thinking at this stage it is on the edge of manageable any further and it could tip over the edge and I won't be able to do it.  I am numbing my mouth and throat with Difflam then getting the drinks down.  In between swallowing and taking my 4 hourly panadol is really painful.  I'm on a fentanoyl patch with slow release morphine just at the lowest level so I still have room to ramp that up if needed.  My neck is not too bad but it is red, but not breaking down yet.  My chest area however is red and beginning to break down...I don't know why they radiate so low down.  Even the Dr was surprised and thinks it maybe a reaction rather than directly from radiation side effects.

This is such a hard road.  Some days I'm like I just can't go on.  Especially tomorrow.  It will be so hard to go there another 5 days for the last of the destruction when I am almost at my end now with everything.  I read back over what you write about post treatment and I am beginning to lose patience.  

Sigh.

April