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

[CaptainAustrali]

Hullo April.

Sorry to hear it's such a **bleep**-show.  But nobody tells us cancer will be fun 😕

Yeah, the mucositis is .. yuck.  And it takes a while to go away .. I read a patient study where the aggregate was about 8 weeks.  I'm 2 months out of therapy, and it's gone down a lot, but I still have it.

Nasal intubation:  this is generally meant to be temporary, and they say it's demoralising to have a big publicly visible tube running out of your nose, and all those well-meant sympathetic looks or awkward eyes averted .... (that wouldnt bother me, but I'm weird).   Personally, as soon as you struggle to take nourishment by mouth, I'd consider it .. but also ask if a PEG is viable.  If you assume you're going to have at least 9 weeks of mucositis, then maybe that length of time (or longer) would justify the minor surgical procedure. 

How much nutrition do you need:  this is an important question.  I started my treatment obese, and the dieticians were real nazis insisting "YOU MUST NOT LOSE WEIGHT DURING THERAPY", but if you look at pubmed and other scholarly and respected sources of information, if you're already obese (or heavy), it's OK to lose weight over therapy, it doesnt undermine the clinical outcomes.  So if they've said take 4 litres of formula a day, that might be based on getting 120g of protein and 1600 calories or something ... whereas with other strategies you might be able to reduce the (traumatic) intake.

If you're not heavy, well you do need to try and maintain weight as best you can, but if you are, the priorities should be (in this order & in my opinion):  hydration, protein, nutrition, calories

- high protein whey shake .. with two small shakes you can get 70g protein per day (.5 litre ish)

- hydration: no way around it, you need to chug a couple of litres of water per day

- nutrition:  a few sustagen shakes per day (250ml ish) should sort you out

- calories:  make your shakes with milk, not water ... and also, if you get a blender, think about popping down to Woolies and buying one of those premium yoghurts .. 600g thick yoghurt mixed with mango or whatnot .. I cant remember the name, but 1 tub is 1000 calories .. if you mix that into a blender either alone or with your formula, it liquifies quite well and you can drink it down for more calories per effort

If I were you, I'd have a careful talk with your dietician(s) and work out the best bang for your buck approach to consumption, and make sure they aren't giving you skewed advice.

My experience with pain:  now, 2 months out, I'm not even taking panadol any more - but I think pain management started about week 6 or 7 (at first just panadol, but ramped up to the endone and morphine powder in week 7).  In my experience, the pain was at its worst in the first couple of weeks after therapy.  I still have pain now, but it's like a kind of perpetual sore throat, nothing I can't live with.  The thing about the pain is ... know that it's temporary.  It may be bad today, it may be bad tomorrow, but in 2 months you will have forgotten it (it's a little like having a baby, we tend to forget the immense pain once it's gone, which psychologically allows us to then go and have more babies).

Other comment on pain:  ramp it up.  If you're experiencing pain without relief, just ramp it up.  The pain relief is there for a reason, don't suffer through it.  Although morphine is addictive, if you're using it to treat genuine pain, you're fine.  My quack urged me to ramp up the pain management, and I did so reluctantly (because my mother is a heroin addict, so I had some genetic familial concerns), but he urged me to use it, it's what it's there for.

[April-Showers]

Two days to go and counting the seconds.

Thanks for the insights Simon, yes somehow I am still managing to get sustagen down (24 scoops over 4 litres), it is hard but I use the difflam to numb the mouth and throat then go for it.  But I absolutely hear you about getting a nasal feeding tube if needed, as soon as I can't manage this then there will be no other option.  At this stage the Dr and deitician have said to put a pewg now this late in treatment is not necessary as any escalation would require a more temporary measure. And it wouldn'd bother me either to have the nasal feeding tube, looks are not a priority for me right now.

I like you analogy with giving birth....so true we forget, but how do you have such insight as a man?  I really really really can't wait for this peak of pain and burn to be over.  I feel completely exhausted physically, mentally and emotionally.

When you say you still have the mucositis to what degree is it?  Two months out of treatment is a long time to live with such a horrible side effect.  How about your taste anything coming back yet?

A tip for the sustagen or smoothies put ice in them....it really soothes the throat.

Nearly there....well for the treatment part of this unwanted journey.

😞

[CaptainAustrali]

I think if your mucositis is gone 8 weeks after treatment, you're lucky.

(I read a patient study where something like 45% reported it was gone by the 8th week, but for many it went on months longer)

I'm about 9 weeks out now, and the mucositis is backing off .. but it's still unpleasant enough to stop me from eating solid food by mouth.  I'd say it's down to about 30% severity of where it was the day I finished treatment.

As the mucositis backs off, you start to notice the dry mouth more .. dry mouth is severe to the point where I can no longer vomit .. just now I was gagging and trying to vomit from a fleck of something in my throat .. but can never get the vomitus up all the way, it kinda lodges in my throat and goes back down (I'm guessing because of the lack of lubrication, dunno)

Trying acupuncture for the dry mouth, some studies have indicated it's been helpful.

[Kinkoona]

The mucosa,we,ll that bought back a few i,am glad distant memories.I had a stage 4 tonsil cancer .That was 5 1/2yrs ago.I have now been cleared twice of any further cancer in me .The last time was 6mths ago when I had major right jaw replacement,it had turned to honeycombdue to radiation .They took a side bone out of my lower leg refashioned it to fit my jaw and that was the end of that very big side effect of the radiation .on a liquid only diet and down to 67 kls before surgery since the jaw surgery I have put on 25 kls ,normal weight for me and I,am eating a expanding soft diet.my lack of salivary glands make sauces my friend .life is diferrant these days ,but ha ,l love it .

[Alan22]

Hi,

My name is Alan, I was diagnosed with Tonsil Cancer ( Left Tonsil; Squamous cell Carcinoma in January 2010 ). Was 52 years young with 3 young adult children and a wife.

Tumour had metastisized to a lymph node under left chin, which is what I found initially. Treatment was a left tonsilectomy, radical neck dissection including half Thyroid. This was followed 6 weeks later by 30 radiation treatments, the side effects of which were pretty much as you have described.

7 years down the track I am happy to say am still cancer free, just having annual inspections by my original surgeon.

Side effects included total loss of taste for a month or so after treatment, then very gradual return of taste over about 12 months to what I would estimate at 75%. Can taste food generally, but wouldn't make a food or wine judge! Your desciptions bring back some memories, it definitely was a painful time post radiation. I left work 3 weeks into treatment as I couldn'y really talk anymore. On returning to work about 8 weeks later, had a huskiness that women said sounded like Barry White the singer. Took that as a compliment.

Dry mouth has remained and have about 25% of normal saliva flow. Need to eat solids with liquids to provide sufficient lubrication. Neck and shoulders remain stiff at times, primarily from the muscles removed, so I have monthly remedial massages to keep them functioning pretty normally.

Attend dentist 6 monthly for extra preventative dental hygeine, doctors/dentists are not keen to do extractions in case of bone necrosis.

Am HPV positive, so possibly a cause there, but a non smoker and occasional social drinker only.

I volunteer with the Cancer Council doing several programs; living Well After Cancer, Relay for Life committee, Cancer Connect, Community Speaker and trainer, Reseach Buddy. All these I find have helped me turn the "lemon" of a Cancer diagnosis into a "lemonade".

Hope your recovery continues to go well.  Alan

[CaptainAustrali]

When I was first diagnosed, I went into an immediate information-gather-mode.

I knew my life was at risk (they'd given me six months), and I needed to investigate and plan, covering everything from treatment options through to end-of-life stuff .. legal will, providing for my children, personal messages for my children, all that.

When I was in the information-gather mode, I searched on all manner of topics .. for me one burning one was whether to get a PEG tube inserted (if it's head & neck with radiation treatment, YES!), and it was people like us diligently sharing their stories that led me to my (in retrospect correct) decision.

Good on you, guys, for sharing, and if any future person is reading this and benefits from it, good on you to - cancer is a frightening, debilitating enemy, but you're not alone in this experience.  Dig deep and fight.

(I got the all-clear a few weeks ago - total metabolic resposnse to treatment, no evidence of disease)

[hector1234]

Hi all,

My first post so wishing all a speedy successful outcome. I have HNSCC left tonsil T2N2B with 7week radiotherapy and 2 chemo sessions. (one cancelled as I was neutropenic that week). I'm approaching week 7 of radiotherapy. Recovery period to follow during which I hope my taste buds recover after disappearing around week 3/4. Taste became of course, that cesspit, cardboard, icky flavour in the mouth we HN CA patients have come to know and love !!!

I am told I am most fortunate as swallowing has not been a major issue and even today I can swallow my liquid diet with relative ease -just finished second large cold coffee drink as we speak. When my taste disappeared I didn't persevere with soft foods but instead switched straight into a Sustagen/Protein shake liquid diet. Its a horrid substitute for real food I can assure you but may well have reduced the level of secondary irritation in my throat/mouth thus extending the period I can swallow with relative ease.

The protein drinks seemed like a good idea but caused major constipation issues (too much weigh powder) especially in conjuction with the GI problems from chemo. So this was substituted for extra Sustagen, custard and cold coffee drinks. In consult with my dietician there is enough protein and calories to keep my weight stable as it has been right through my liquid diet phase. I still drive myself to treatment every day, use just 2 panadol in the AM and an afternoon endone plus one or two an hour or so before bed. I am still sleeping Ok and just go easy during the day so as not to burn off too many calories. Thats it. I am told I have had something of a dream run compared to many who suffer much worse.

But perhaps thats the message I want to convey. Its different for everyone, be a participant in your tretament - it was my idea early on to go straight for a liquid diet. I also managed my own pain relief schedule to suit- much to the chagrin of my specialist who wanted a standard regime attached to meal times, he assumed, reasonably, that swallowing would be the major difficulty for me as it is for many HNSCC patients and a PEG tube or NG was an inevitability not an option. I adjusted things to suit how I felt but still listened to advice of course.

I have also been ruthless with my oral hygiene and find the morning wash with Peter Mac mouthwash cleans out some of that O/night gunk. I lost 5 teeth to reduce my risk of ORN so have to look after what remains. I know will have crinkled old looking skin afterwards on my neck despite Sorbolene but who cares - my days as a  - I can't think of an alternative non-sexist term so forgive me this one - a chick magnet, are long gone. I am just pleased- ecstatic, that modern medical science is giving me a second chance - no offence - you can keep your prayers.

Cancer carers one and all have been models of professionalism and caring. As for cost and efficiency of the whole public/private cancer management - just consider right now there are over 300 million americans who don't like universal health care because it smells of socialism. Are you kidding or what?

Sorry for long post but first -let me off this time. My love and best wishes to all.

[hector1234]

Hi all,

I appreciate this forum thread is old (February 2017?) but wanted to mention a couple of things in regard to this particular comment by CaptainAustrali. I realise people mean well but we must all be careful about remarks that may be pertinent to your own care but not necessarily to others. And medical accuracy is also important. For example, its not "Nasal Intubation" as CaptainAustralia has stated. This is not the correct term -  "Nasogastric tubes" are simply plastic tubes inserted through the nose down into the stomach. They have a simple port at the mouth end to which you will attach your syringe with liquid nutrients - a little like sustagen mixed with milk and are used when the normal oral feeding pathway is not available or has become problematice - for example due to pain, partial obstruction by a tumor growth etc. "Nasal Intubation" describes insertion of an ET (endotracheal) tube via the nose into the lungs (for ventialtion in the unconscious person only!!!!!!!) when the oral route is unavailable or less desireable. You will never get one for feeding!!!! The other gentle critique if I may is weight management is crucial in HN cancer situations. This must be managed in consultation with your doctors and dietitcian and continues after treatement concludes. Radiotherapy and chemo induce changes to metabolism that perisist after treatment concludes. And so important to be aware - Articles in the medical literature do not define or describe individual treatment or outcomes - they are academic dicussion points highlighting developments and contemporary or past investigations and may ultimately influence treatment pathways but can't be used as a guide. Many articles will point to survivability statistics and the like for example. Read on their own this can be very alarming if you don't know how to interpret the data or conclusions. Your specialists give you the most realistic and reliable indicators and these are the people you should listen too not articles read on PUb MEd, Medline or Google scholar. Beware Dr Google!!! As for pain relief - all medicines come with effects and side effects. Analgesics in particular are by design and definition potent pharmaceuticals - they need to be. Opiates in particular - Codeine, Morphine, Oxycodone, Fentanyl, Hydromorphone etc are very potent and come with many, many side effects including dependency issues and can be abused. Your regime of pain relief can be adjusted at any time - but must always be done so in consult with your specialist who is pervue to your specific medical conditions, your age, general health, co-existing medical problems use of other meds etc. I hope PAtian Autrali is not offended -not intended. I have learned myself along the way that medical literure is a trap - and I have some medical training and was led astray. My doctors and nurses were always happy to broach my medical questions and pleased in manyw ays to discuss the topics in abit more detail. Their advice was thus all the more important to me and differed rather markedly to impressions I got by reading publsihed papers. Good luck to all.

[CaptainAustrali]

Nasal intubation means putting a tube into your nose.

So yeah, you could be really pedantic and say it needs to be referred to as "naso-gastric intubation" so that we all know the tube is going in through the nose into the tummy for feeding (as opposed to into the lung for breathing)

BUT

We're talking about feeding tubes here, so .. duh .. context.

My advice is NOT to take advice only from your medical team, as they are stuck with only being able to provide evidence-based information that is considered to have been scientifically proven.  Outside of this, there's an array of information that falls into common sense, logic, patient experience - I'd suggest finding info from a variety of sources and deciding which one you trust most.

For me, pubmed was invaluable.  For different people mileage might vary ..

.. but take the above example about being corrected on "nasal intubation" as if the information was dangerously wrong (it wasn't - again it literally means a tube in the nose without specifically stating where it goes --- as an alternative to a tube into the stomach).  Blah blah will proliferate all over the internet.  For me, the best source you can trust is one that's data rational (and pubmed is all scholarly articles that have to meet scientific standards).

The hospital professionals (dieticians) in my example gave awful awful advice, pubmed gave me truth.

Good luck.

[hector1234]

Hi Captain,

I wasn't intending to be pedantic or getting you riled but not predanticisim. Firstly, its a descritpion of an invasive medical intervention so accuracy matters. Ventilation is not feeding. Secondly after nasal (or endo-tracheal) "intubation" another tube is placed - either, a naso or orgastric tube. The route (nose or mouth) depends on several factors as well as access of the route for the purpose. Hence nasal intubation is not naso-gastric tube placement. I have performed all 4 procedures in the field. 

Now I'm all for common sense, logic and patient experience but your comment about the "medical team"  being:: "with only being able to provide evidence-based information that is considered to have been scientifically proven", makes no sense whatsoever. Exactly what other information would suggest best guarantees your cancer outcome if not scientifically validated information and technologies? And who wrote the very papers you are saying you have read on PubMed if not the same medical professionals (and researchers) involved in this area of patient care? As for the array of other information you speak of -  more often than not it steers further and further away from medical reality based on solid science into areas of personal opinion, conjecture, conspiracy theories, psuedo-science, fakery and con artists with magic cures for cancer.

And I can't say I understand what your phrase "data rational" means. Pubmed is but one source of medical literature on the web. There are many medical databases and many published papers, some excellent, some throw-away. Unless you understand oncology and related topics you are ill-advised to start interpreting papers you come across on the web. Unless you precisely waht it is you are looking for you are just as likely to find misleading articles, out of date information of ideas floated in academic circles but yet to be tested and validated with laborartory experimentation and human trials.

The medical professionals involved in our care are trained, educated and experienced. They work in an incredibly complex and demanding area of medical care. How many cancer patients would your own specialist and nurses have treated, spoken to over the years? How many variations on a theme, different responses to treatement, different side effects would they have had to manage so each patient gets individualised treatment that works best for that patient?

I suggested in my previous reply that we should go through our medical professionals when concerned about our care. You can always get another opinion - but not one from the web. That is neither logical nor sensible.