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

[CaptainAustrali]

Hi There

So at age 44, I was diagnosed with a regionally advanced head & neck cancer.  It was staged at T4N2BM0 if that makes sense to any of you. 

It was a cancer starting on the tonsil, and had grown to the point that it was abutting the jaw & soft palate, and the local lymph node had a string of cancer in it, and they thought there was also a microscopic cancer presence in the opposite lymph node.

I had 35 radiation treatments over 7 weeks, and 3 doses of chemotherapy (high dose cisplatin)

The goal was total curative treatment, although survival rates for my cancer were around 60%, I have some advantages:

- cancer was HPV+ (+20%)

- I have a nagging wife to look after me (+3%)

- I'm young and strong and will endure any treatment without complaint or disruption (+2%)

So my numbers are pretty good that the cancer will be eliminated from my body, after which I intend to take a holistic health approach to my life, dealing especially with nutrition and immuno-defense.  (I think that's how cancer took hold - we are always fighting of mutation and cancer, but I had 3 young sons born over 5 years and one turned out to be autistic, and I just let my defenses drop as I focussed on them).

I tolerated treatment pretty well .. only toward the end did it start to get a bit rough, in the final weeks the side effects crept up on me.  I suffered from:

- total loss of taste, and

- rancid taste dysgeusia (where your saliva and anything else put in your mouth tastes rotten / contaminated)

- moderate interior and external burns to neck

- increasing mucositis (ropey, thick & foul tasting mucous that I had to cough up constantly)

The first week after treatment was the absolute worst in my life.  Horrible pain in my mouth, throat and neck (the oncologist says a normal person would be screaming, I was taking aspirin - but they immediately prescribed a morphine based pain remedy).

Right now, I'm 5 weeks out of treatment, and I'd say that each week I've gotten about 10% better.  My suffering in week one was at it's peak .. let's say 95% .. I can imagine worst suffering but not by much.  Constant vomitting, constipation, blood from mouth and bum, really nasty stuff, mucous always being coughed / vomitted up ... yuck.

But now, 5 weeks later, I'd say it's sitting at a comfortable 45% .. still suffering, but feeling better and stronger.  I can drink a little by mouth now, and I'm starting to experiment with soft foods (been wholly reliant on a PEG tube for the past 3 months).

Anyway, that's my story, which leads to my question.

If you've been treated for head & neck cancer, can you share your story on the side effects and how long they lasted ?

For me, the main ongoing problems are interior throat/neck pain, and thick, ropey mucous.  My sense of taste is returning, it's not 100% but it's coming back .. if not for the yucky tasting mucous contaminating everything, I could probably eat totally by mouth now.

I saw a patient survey that said the average time for mucositis to heal was 8 weeks.

What was your experience ?

[JonasVarcoe]

Hello

I had throat cancer some ten years ago at the age of 34. Surgery removed the tumor and an arc of my tongue, lymph nodes, and one silivary gland. 6 weeks of radio and 3 boots of chemo as well . We were/ are in a similar boat.  I had the same side effects for around 4 to 6 weeks before it stated to subside, excess mucus residing and "that taste" leaving my mouth. I had a peg to feed which came out 4 weeks after treatment and also my tongue stitched to my cheek. This helped a bit as I didn't need to use my mouth. I dropped 18 kg which took nearly a year to get back.

A lot has passed since it all happened for me including side effects from the radio which is happening now (ive a post about that)

If a call would help to discuss any thing Im more than happy to do that 

[JonasVarcoe]

Sorry I prematurely sent !, My name is Jonas. I totally know what your going through and feel for you . Let me know if you walk to have a yak as I found this helped . Take care and keep head up where possible. It will end and your through the hardest part
Jonas

[CaptainAustrali]

Hey Jonas

Mate thank you very much for taking the time to reply.

Honestly, just hearing that someone with a very similar experience had the side effects start to fade around 6 weeks following on from treatment is a major encouragement.

I can feel things getting better, so it seems like I can have a degree of confidence that this'll continue.

My hope is the mucos-slime will be a thing of the past sometime in the next few weeks - that would be .. a delight.

My only problem is the shadow of an unknown result looming over me.  I have my supplemental PET Scan scheduled for 21 March, where I really really really hope the doctor will confirm for me "Simon, there's no evidence of disease, looks like we got it"

If they tell me something else, I may just be screwed 😕

For my type of cancer, radiation is the first and best treatment.  Now that it's shrunk substantially, there may be a surgical option, but if the radiation didn't succeed, I understand that my prognosis takes a sharp dive.

Which is heart-breaking, not for the loss of my own life, but for the fact that I have three sons, one of whom is autistic, and needs me there to guide and love them in the years to come.

I can't and won't subject those children to losing a father at ages 4, 6 & 8 !

But it's looming over my head as a big UNKNOWN until 21 March.  But in the meantime, fingers (and eyes, and toes and everything else) are crossed as far as they'll go.

[April-Showers]

HI there,

I was diagnosed with squamous cell carcinoma with unknown primary that had moved to my left lymph node.  12 Dec they operated and at that stage everyone thought I was have a branchial cleft cyst removed.  Post op came the news and the grey cloud is hanging over ever since.

My background is similar to you Simon, I'm 45, with four kids 4, 8, 13 and 15.  This news has turned life upside down for me my husband.  So I hear you and can sooo relate to your words especially about family and life beyond this.

I have just finished week three of radiation and the side effects are kicking in.  Dry mouth, thickened saliva, soar throat, very tender mouth.  I am pretty much living on sustagen which is really the only thing keeping me away from a peg.

I only need 30 rads and I have had 1 chemo that sent me down....constipation nausea vomiting and and.....chemo dr really said rad is priority so he has knocked off the second dose....which I had mixed feelings about...despite the muck being the absolute pits!...my only q to him was will my outcomes be affected...he said no.  Chemo was just an extra thing in my case.

So here we are three weeks in and as I read your post 5 weeks out of treatment I am wondering what the heck is coming to me and how I am going to get through.

Where are you located Simon?....I am in melbourne....can we mention where we are being treated?

Anyways have read all your posts and I am wondering if I should have come on here as some of the posts (not just yours) have reduced me to tears....some really hard life curve balls on here..:(

April

[April-Showers]

also...mine was HPV positive too

[CaptainAustrali]

Hey April

I'm sorry if it's a kick in the guts, but if you're starting to get hit with side effects at week 3 of radiation, I think it's probably going to get much more severe.

I'm assuming you've got a 7 week course of radiation, as I did ?

For me, I had next to no side effects up until about the 5th week, where the damage to my inner mouth & neck started to evidence itself in mucositis.  (Actually, I did lose my sense of taste not long after the first chemo, but that was manageable until the mucositis hit).

From Week 5 onward, it was a gradual escalation, culminating in the worst week of my life in Week 8 (the first week after treatment - actually the first fortnight .. was just awful).

Right now, I'm about 6 weeks after treatment, and the mucositis is starting to go.

Thankfully, for the first night in ages, I had a full nights' sleep last night .. and I didnt have to roll over to spit in a bucket once (whereas a week or so ago, I'd be spitting many many times a night).

Still can't eat by mouth as the mucous slime & taste distortion work together to make it too unpleasant, but I am back to taking hydration almost purely by mouth, the first time I drank a 1 litre bottle of water felt like a real victory.

But yeah, April, based on what you're indicating, if you don't have a PEG in, I'd suggest seriously talking it through with your doctor.  From my reading, virtually ALL head and neck cancer patients suffer mucositis and serious internal damage & pain.  (And external burns in many cases).

If I didn't have my PEG, I would be in a pretty grim place - even with it, I've lost about 15 kilos (but luckily I was quite overweight at the start of therapy).

Incidentally, if you are a bit chubby and the dieticians tell you that you have to maintain weight over therapy, but it hurts or is disgusting to force yourself to eat, tell them to go take a flying leap .. the scientific evidence supports that weight loss during treatment (for the obese/heavy cohort) in no way impacts the patient outcomes that matter.

But yeah, my advice would be to very seriously consider a PEG tube.  Mine was inserted before treatment "Prophylactically", on the basis that I would very likely need it .. I was worried at the time, but in retrospect it was a vitally important decision and I'm very glad they pressed for it.

Also:  I'm in Brisbane, I know this is the NSW forum (sorry cockroaches!) I just stumbled here randomly and you tend to stay where you start 🙂

Kind Regards

Simon

[CaptainAustrali]

30 rads .. okay so that's 6 weeks.  I'd predict your current problems will worsen slightly every week, and around week 6 (and the first week after treatment), if you don't have a PEG inserted, you may run into trouble taking nutrition and hydration by mouth.

Best of luck, I really wish you well.  It sucks about the kids, doesnt it ?  All we can do is push that anxiety aside and move forward with as much personal strength as possible.

S

[CaptainAustrali]

Sorry April, one last comment .. on missing chemo.

I think it's important but not the end of the world.  I personally take the numbers as a pretty good guide .. prognostic numbers I mean .. knowing I have an 80%+ chance of disease free survival was encouraging for me ..

(Actually it prompted a bit of "Gallows Humour", I'd be in the cancer clinic, young and strong, and I'd look at 20 or so fellow patients around me and joke in my mind, "Oh .. sir, you're older than God .. sorry, you're OUT, that gives me an extra 4%" .. "Oh mate, is that wound on your leg actually weeping pus right now ?  Sorry you're OUT and I'm up another 4%" "oh maam you look so kind and I feel for you, but you're clearly over 85 ... OUT .. hey that's almost got me to 100%!)

(Cancer is weird)

But yeah, chemotherapy .. when they use it to support radiation, I think it's called induction chemotherapy, and it's designed to help focus the radiation on the mutant cancer cells, and in terms of the ultimate patient outcomes, it's supposed to add approximately 2% to overall survival rates of people in our kind of situations.

So by being unable to tolerate the full course of chemo, your prognosis dips -2%

It's not too bad, as far as numbers games go .. but I'd personally cling to every percent if I could.

THAT SAID .. mate .. the loss of taste and taste distortion, the tinnitus (ear ringing), constipation, leg bloating .. all that friendly crap the chemo has to offer .. well, if you get to avoid that, it might be a worthy tradeoff.

But the doctor is absolutely correct, for our kind of head & neck squamous cell carcinoma, radiation is considered the first and best line of defense (unless it's early enough and clearly marginated enough to have a solid surgical option).

[April-Showers]

HI there Simon,

Thanks for your replies.....I really appreciate it.

I forgot to mention vital info....I have had a full neck dissection they removed the node where the tumor was and 38 nodes in the area....all except that one came back cancer.

Yea with the chemo I was straight out with the Dr I don't want to compromise my outcomes whatsoever....he assured me that it wouldn't.  They are treating what may be left behind (I have had a pet and nothing is coming up at all in the head and neck region) and an unknown primary.

I already had tinnitus before I started all this and it has become slightly worse with the radiation.  The one dose of chemo was with carboplatin and not the usual sisplatin due to the hearing lose it can cause.

yes I am only doing 6 weeks of rad.....your reply has scared me now....I have said to the Drs from the outset I don't want a feeding tube....they said it is doable, diet is the crucial decider on it.  I am living on sustagen and whatever soups and pureed oats in water I can get down.

I don't have any redness outside yet it is all in the mouth and throat.  What were you given for pain?  I had to up the panadol to a morphine based pain killer and it sent me balmy yesterday and friday!....I felt completely anxious and restless couldn't sleep the whole night...completely whacko!

I will be telling them tomorrow I can't handle the stuff....but I'm a bit worried if that is all that is on offer.  I have managed the weekend with panadol two over four hours and it has allowed me to manage the pain.

Thanks for your insights Simon greatly appreciated.

April