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

[CaptainAustrali]

Not interested in continuing this dialogue, but I will reassert my key points, even if they are beyond your understanding:

1) Intubation (without clarity) is most commonly used in emergency settings, and as such the term is commonly received as meaning to achieve an airway - nasally or even via tracheotomy etc.  Nasal intubation means putting a tube into your nose, and in context of course the earlier messages in this (now derailed) thread all refer to FEEDING tubes (technicially called naso-gastric intubation).  If you're a candidate for a feeding tube, decide what you want to do, but I personally favour the PEG.

2) Orthodox treatment (through your hospital team) is not the only source of information available to you.

The info that you receive will be conventional wisdom of the day, that is strictly evidence-based.  And yes, it will encapsulate people who have seen patients arrive/survive/die thousands of times (not that this is necessarily a good thing), and the viewpoints will be cemented in that experience only.  With every area of science, there are proven theories, disproven theories and UNproven theories.  (example of an unproven theory is the mind-gut axis relationship to autism).  You can find a wealth of data on any given topic that is currently being scientifically explored (but not yet proven as to be in conventional treatment), and that data rational approach is (in my opinion) useful.  Example, PEG tubes, you can learn that 20% of them have complications (without checking the numbers) but of the 20, only 1 is serious, and that naso-gastric tubes are statistically a little less dangerous (but a lot less convenient).  You'll get the insight that hospital staff will recommend prophylactic PEG insertion because of the relative cost & hassle of installing and maintaining a naso-gastric tube, even though they are slightly safer in terms of surgical risk.  That's just an example where, if you're unsure what to do, it's worth looking at all the information available from all sources.

Another relates to the hunter-killer gene that actively fights cancer in your body daily.  No orthodox clinicial will give you any advice regarding the immunonological approach to treating cancer, despite the fact that the science (unproven) is moving in that direction.  It will be 20 years before that science is in the conventional treatment sphere .. but in the meantime you may have a bad prognosis but be a candidate for a clinical trial in immunotherapy (if you are aware of it and know to ask about it / beg for it).

3) Your priority is your own wellbeing and survival

"How many variations would they have to manage if each patient gets individual treatment" .. screw that.  

If you need something, seek it out.  If you are not getting the information you need and feel confused, demand answers.  If you can't find them from your doctor, look for them elsewhere.  Don't be complacent about your care, be an active participant.  I'm not arguing against orthodox treatment, or ignoring the advice of your doctors, I'm arguing for making informed choices.  Be aware how much information is available to you, and if you feel you can handle it, seek it out.

Hector, you seem like a "last word" kind of guy, so be my guest .. but I won't be back to engage in a futile and circular discussion. This thread was about my thoughts and experiences, maybe you should start your own - if you want to champion against people reading the internet, you've got a lot of posting to do -- in fact it seems a bit counter-intuitive to be here at all unless it's just for cuddly feely support stuff, as anything information based should result in "talk to your doctor".

[Anonymous]

Hey Hector

Thank God I found your post!! 🙂

After reading all of the other dire accounts of phlegm and pain and PEGs it was a relief to find someone who got through a brutal but tolerable treatment in a slightly more manageable way.  Oh, I'm by no means thinking you've had it easy, but your account does give me a bit more positivity.

I'm just diagnosed T2N2c with primary at base of tongue and am in for the multi-disciplinary team review on Friday, I guess treatment starts soon after that - I'm praying my reaction to it is more like yours than some of the other poor souls'.

Thank you for sharing

Cheers

Shane

[Anonymous]

Hi Captain

Thank you for the week-by-week account of your treatment and post-treatment period.  I'm facing that rough road very soon and I'm the sort that likes to have a plan, so being able to plan for the escalation of pain, goo and burns has given me a strange sort of comfort, but a lot of trepidation.  

Cheers

Shane

[Anonymous]

Hi April

I'm so impressed by your gourageous approach to treatment and maintaining nutrition, I've scoured your messages for tips and a bit of inspiration.

One thing you mentioned that I haven't seen else where is use of a nebuliser - would you mind sharing what you used through it... Butamol or another product?

Hoping you've continued to heal okay since your last post...

Regards

Shane

[hector1234]

Hi Shane,

I'm sure you will experience a lot of confusion, doubts and uncertainty in this early period. And It would be nice to say the situation is a walk in the park but it isn't and there will be tough times ahead. However, you can be reassured that if your supporting cancer team are anything like those who guided me through then you will feel more confident and resilient that the journey will be tackled with caring and supportive medical staff beside you. Listen to their advice, follow instructions but always ask questions and participate in your own care. There is no embarassment in asking something you might feel ridiculous about but is important personally for you. For example, when I lost my taste around week 4 of my radiotherapy I switched to a sustagen/protein shake type diet after consulting with my dietician. With the GI problems caused by chemo already unsettling my bowels I discovered the protein shakes caused massive constipation issues. So there were a lot of discusssions about poo!! But the answer came in realising the protein drinks contain a large abmount of wey powder and it was this that was causing the problem. The solution was as simple as adding a few scoops of sustagen with fibre to each meal. And there is no advantage whatsoever in being stoic. If things are not going right you must speak up and consult with your medical team - you win no prizes by hiding behind your pride. When the specialist ask how you are doing be honest. If you ares truggling with anything, let them know. There are many ways to manage situations and your cancer team wants your care to be effective and personalised to your needs but they are not mind readers. I'm in recovery period now so free of further treatment but my mouth ulcers haven't healed yet, I have no taste back yet and my whole oral cavity feels and tastes like it was used for as a temprary sewerage treatment plant. But I know it will recover. Patience then. Ask questions, don't be ashamed of admitting your frailties. And best of luck.

Hector

[April-Showers]

HI Guys,

The last time I posted on here I was in last week of treatment!  I thought I'd pop back in to firstly say thank you so much Simon for replying to my desperate posts seeking advice and support, I really appreciated that. 

Going forward I finished treatment 26 Feb 2017 so I'm 8 months out and I can say the only thing left as far as side effects is the intermittent sense of taste.  Yes it was a long road and the day I finished treatment I couldn't eat or drink and I stayed like that for three days!  But being stubborn about not wanting to see another hospital bed I road it out and went to bed and stayed there!  You will need support and you will need to find the strength to get through this.  It is a **bleep** hard road but it's doable.  There are wonderful people (like Simon and so many others) that have been there and can share experiences.No matter what anyone said to me nothing could have prepared me for the slow road of recovery.....it was very very slow....and painful!

On top of all my Head and neck treatment and surgery I had a spot on my pancreas show up on the pet.  I went in for surgery in May and good news it was a low grade tumor that was fortunately located in the tail so could be removed and requires no further treatment.  I feel truly blessed.

Today I feel great....I do see a naturopath regularly to keep my immune system optimal and do what I can with prevention.

I had a pet last week and a CT two months ago and I'm all clear!!!

I have learnt a lot throughout this all it has been a massive thing in my life.

Moving forward (which is something you will do once you recover!) its all about enjoying family and appreciating all the blessings we have!

Shane, I really feel for you if I have understood correctly you will start treatment soon?

Yes the nebuliser REALLLLLLLY helped with the mucus that builds up once radiation damage begins.  I actually borrowed one from rad department and I kept using it for around a month after treatment ended.  Steam helps to break it down and allow you to breath.  As Simon mentions in earlier posts it does get to a point where there is a constant build up of mucus no matter how much you clear it, it just comes back.  It's the body reacting to the damage there.  The week or so after treatment I slept in an upright position and woke during the night a few times to use the nebuliser.  Showers help too but once the burns come out towards end of treatment showers get difficult.  With nutrition everyone will have there own individual path with it.  I know Simon had the peg and absolutely needed it.  I didn't and pushed my way through without it....but my treatment was slightly different to Simon he had three chemo I only had one.  You will be guided by your oncologist and dietian about that.  But I was adamont from teh beiginning not to have a peg, at one stage it looked like I needed nasal feeding but I was able to avoid it and push through.  That being said I have lost to date 30kg!!!  But that is not all atributed to rad I also had the op on the pancreas and that set me back a bit nutrition wise too as I couldn't manage much after that.  Until now my meals are not big but I have apetite am able to eat, drink and am pretty much (although things will never be as they were pretreatment its a "new normal") back to normal!

Simon, I was very happy to read you got an all clear!!!!!.....how good is that!!!! best news ever!!!  Go live life and enjoy your beautiful family!  Cancer survivors high five!!

Please Shane if you have any qs or need any advise etc....please pop back in and let us know how you are getting on.  The posts from Simon on here helped me greatly!  

[April-Showers]

Sorry Shane I forgot to mention I only used saline through the neb.....you can mix your own or the rad dept can give you little tubes.  For me it was worth its weight in gold....I had a lot of trouble from around week 3 being able to lay on the rad table with the mask on without choking on mucus!!!  So I would do a neb just before going in for treatment and was able to get through that way.  Dry environments were very irritating too so I actually bought a humidifier for the bedroom at night also helped a lot to keep the mucus broken down and clear.  I still use it until now if I feel dryness in the air.  Dryness is a problem post treatment as saliva is limited so moist air is a winner.  

[Anonymous]

Hi April - thank you for your replies and those great tips - some hard won lessons there I bet.  It must have been a huge disappointment to find that secondary site, I can't imagine how that would have felt...

Since my last post my diagnosis has been ramped up to T4N2c, with things a little further advanced than they first thought.  Treatment starts on 9th October, 35 radiation blasts over 7 weeks with chemoe on weeks 1, 4 and 7.

Because of the treatment plan and fact that I'm already fairly fit and lean they strongly recommend a PEG as a precaution, which is scheduled for this coming Wedesday.  Psychologically that is a bigger hurdle right now than the treatment as I normally get to the sea each weekend and was hoping to continue thorugh treatment for its mental benefits - even if just to bob around in a sheltered spot, although a quiet paddle on my surf ski or SUP was also in my mind.  The PEG means no water immersion so that plan might be dashed...

I've also signed up to a 50/50 random immunotherapy trial.  Trials with other cancers have improved outcomes, and I figure that even if I miss out on the good juice and have the placebo I'll be more closely monitored than a normal patient which would be a good thing I reckon.

I'll invest in the nebuliser I think, especailly if it keeps me eating and I don't need to use the PEG.  I'll curse the thing if I get through without it, but I guess its a safety net and will hopefully get me back on my feet more quickly so I can regain fitness.

Thank you again for all the great pointers through your posts, and for the inspiration you've provided.  I'll post an update in a few weeks when I'm kicking in to the treatment.

[April-Showers]

HI Shane,

Have you had any surgery?  neck dissection?  So you have lymph gland involvement?

Don't stress too much about the peg.  I was having the same treatment at the same time as a wonderful irish guy....they told him the same he would need a peg from the get go.  I remember beginning week five and turning up in the rad waiting room to find him still able to chuff coffee down with no sign of even needing the peg!  Here I was with no peg on a liquid diet only from the end of week three.  So really everyone is different and I think it is better to have the peg there IN case you need it.  NO one knows how you will react to rad and chemo until you start having it....there are known side effects you may get some you may get all!  The Drs and rd nurses and staff will treat all your symptoms as and when they occur.  So don't street too much there is a wonderful experienced team that is there to get you through this...and you will will get through it...but you will face times you feel like you can't get through it but something will push you on.  How old are you?  Maybe you have family or a good support network around you?...you will need it. I noticed men having cancer treatment coming in for rad for weeks alone.  All the women would have family with them, husband or other family member.  Don't feel you can't lean on someone.....family sometimes don't know what to do.  Just say come with me today keep me company.  It will be the longest 6 weeks of your life....you will need support don't try to be brave and ride it out alone.  I think men find that hard to do.  WOmen are much more ready to reach out.  I remember arriving to rad towards the end of my treatment on my own I sat down burst into tears....the guy next to me was like are you okay what can I do for you.  We started chatting and he was having exactly the same treatment just a week behind me.  By the time my husband had parked the car and caught up with me I was feeling much better.  You will have downs that is when you really need to reach out.

Right now though, enjoy some time at the beach and do those things you love to do before rad starts.  Stay positive and think of it as a journey....it will end but you need to go though this right now.

Where are  you located?  I am sure wherever you are you will get the best treatment, the Drs and all staff involved in care for cancer patients are just fantastic.  Do your research though feel comfortable and informed about your treatment and the decisions being made. 

All the best Shane....thumbs up for successful treatment. 

[CaptainAustrali]

Hey Guys

Sorry for not responding sooner, I went through a "I'm done with cancer" period where I just took the kids on an epic road trip in the RV (winding up from Brisbane, through the Northern Territory and down from Darwin to Alice Springs and Uluru.  Over 3 weeks or so we covered about 10,000km, I think.

Shane, I couldn't be more delighted that me muddling through my experiences has been of help to someone.  One thing to bear in mind is that treatments are always improving.  Immunology is a really interesting area of cancer cure & prevention.  But even little stuff like the "magic mouthwash" and dealing with the phlegm.  When I was dealing with it there were some products available in the USA based on the magic mouthwash formula but with some very specific ingredients that coat the inside of the mouth and tract rebuilding a barrier over the inflammation .. I can't remember the details, but at my time of treatment the hospital pharmacist said they were looking at getting those medicines in Australia .. so a year later .. who knows ?  If you have problems in that area it's worth a fresh research.

April, glad you're doing well - cancer is a **bleep**-show, but if you find the right mindset getting past it can be a little comparable to becoming a born-again-Christian.. you get a second chance with everything, even if it does come at a cost.

Shane:  if you're in the middle of treatment right now, you're probably right in the trenches, or about to climb down.  For me the worst parts were weeks 6, 7, 8, 9, 10, 11, 12 (with actual treatment ending at week 7).  So the last two weeks of treatment were when everything accumulated, and post-treatment was particularly woeful.  But as April mentions, everyone is different.  Just take heart from this .. if you're in the trenches .. the time passes.  Take your amusement and distractions wherever you can find them and just put in the hours ... six months later, you'll feel human again .. a year later, the treatment will be fading into memory.  Good luck.