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

[mahootna]

@Bill1 

Hi Bill, I am six years out and still have problems with oral thrush.  It is an ongoing condition because of the compromised saliva, or total lack of saliva.

My doctors prescribed Fluconazale  (spelling  is off today) first when I was having my treatment all those years ago.

It is a propholactic antibiotic that helps prevent oral thrush.  In the beginning I was taking it every day but now only take it twice a week.

If you take it your GP will need to do liver function tests every six months or so as long term it can have an effect on the liver.

Sometimes the thrush flares up and I take every day for two weeks then back to twice a week.

It is often prescribed when there is immunology problems.

Hope this helps.

[mahootna]

Hi everyone

Have seen a few posts with queries regarding problems during and post teatment.

I am almost six years post treatment and my experiences relate to patients in Australia.

All the major problems during treatment such as pain and extra thick mucus went after some months.

Then it was adjusting to just what I could now eat.

Things to remember and they may not tell you because everyone is different.

Saliva glands are actually destroyed during radiation treatment and they never recover.  
This means you will have a lack of saliva for the rest of your life.  If you still have some, it will be thick and not much good.  This is why they get you to have regular dental checks and to make sure you clean you teeth and moth daily.  This also leads to ongoing problems with oral thrush.

Your Thyriod glands are more than likely affected and you will need treatment for this.

Magnesium levels are often depleted and will need topping up from time to time.

If most of your treatment was in the neck area you will have scaring and the nerves will be damaged.

I suffer in the cold weather and this area becomes very sensitive to touch.

Also have sensation that feels like ants or spiders are crawling over this area.  Apparently all normal for damaged nerves.

The biggest hurdle is finding which foods you can now eat because without the saliva it is difficult to swallow some things.

Gravies and sauces become your best friend along with custard and cream.

I have found water is the best thing during the day and also have a bottle by the bed for night time.

I always rinse my mouth with Biotene mouth wash first thing in the morning.  there are others on the market.

Hope this helps some out there as it is a long lonely road.  Only those who have traveled it will understand.

Best wishes to all

[Bill1]

thank you Capt. and thank you to everyone for answering my questions regarding my mucocitis and thrush....i started my Fluzonazole today with 200 mg today and 100mg for next 4 days...i hope it can help because i havent been able to talk for weeks on end and i do believe the doctors know how to use the radiation but are oblivious to how to treat side affects...this should have been tended to weeks ago...my mouthe looks like tomato cut in half...the pain is off the map and i have very little to take for that pain....but my question is this....if my mouth is raw meat with the pain level about as high as a person could take without being admitted to the hospital....should i get my last 2 treatments in the morning and on tuesday ?

i have had to date 33 treatments of 2gy per treatment to a 2.3cm cancer in tonsil for a total of 66gy and 5 cisplatin chemo treatments to date...would it be wise to NOT get the last 2 radiation treatments and have to go to the hospital to treat the pain it will inflict as far as i can it may do etc....i just dont know how i could take 2 more blasts of tonsil and lymphs .....the 4 lymphs were at like 1.6gy...the 4 lymphs were less than 2 cm's

i feel if the dr looks at me monday afternoon he will say your doing great (as he always says) and lets get in there and get our radiation !!!....meanwhile i have sit home and suffer or go to the hospital....yes i take oxicodone 5mg liquid in my tube every 4 hours as needed but it just takes the edge off...not the pain...the pain comes thru loud and clear...i am getting nourishment and fluids thru the tube so i am good there but the pain is off the map....

if it were you....would you skip the last 2 treatments or at least post pone them if thats an option???

my mouth is an open wound... ???  i can not imagine what 2 more treatments on top of this would do ??  has anyone experienced this at the end.....??

thanks to all

Bill

[CaptainAustrali]

Mate, that's one that only you can decide.

Me ?  I'd take the treatment.  Pain is temporary.  And so is life.  The treatments represent you fighting to prolong your life, which the cancer would otherwise claim from you.  

No doubt they probably build a 'safety margin' into these things .. but they base the treatment plans around a 'duty of care', ie what is the most scientifically balanced proven orthodox approach to treatment.  I had 35 treatments, it seems to be a universal number .. 7 weeks x 5 times per week.

I don't know why that is, but I trust that it was a conclusion reached based on data.  

Given that, I personally would take the short-term pain on the basis that …. if I chose to NOT have the treatments, and the cancer was NOT beaten, I'd always wonder if it were my fault.   Fight for life 100%, soldier through the side effects, that would be MY approach.

But mate, you need to decide for yourself.

They do prescribe morphine based medicine at this stage of treatment, and I guess it's for a reason.  I avoided taking it myself (my mother was a heroin addict, and I didn't want to invite any open doors into my own life, in case I had some kind of hereditary weakness).  But I'm also very stoic with pain.  I remember the doctor looking inside my mouth and asking if the morphine based pain meds were helping me manage my pain.  I said - "I'm OK, I've just been taking Panadol every 4 hours, that's keeping it under control".  He was clearly flummoxed and puzzled, and said "you should be screaming with agony right now!"

That's for context .. so when I say "soldier through it", it's from the vantage point of someone who (I guess) has a pretty high pain threshold.  

If you were family, and non-compus mentis, and I had to decide FOR you, I'd be asking the doctor what kind of aggressive pain relief were available (I think it's all exacerbated by the thrush, and you may find the pain becomes much more tolerable after that medicine starts working).  If they gave me confidence that we could manage the pain, I'd go ahead with the treatments.  If there was any doubt .. I'd … struggle with it, but probably still go ahead with the treatments, and sit with you through the aftermath until it got better.  (Knowing that it will, at some point).

Sorry mate, mostly ------ it's a great big DUNNO from me, with a heavy side-dish of … I'd lean toward treatment.

I'd also ask the doctor if the treatments gain power over time .. it may be that treatments 1-20 are .. kinda .. primers, if you know what I mean .. softening the soil.  Treatments 21-30 are moderately effective and represent about 40-50% of the effectiveness/work.  And the last 5 treatments represent 50% of the work .. meaning skip 2 and your treatment becomes 20% less effective.  THOSE ARE JUST MADE UP EXAMPLE NUMBERS.  But I reckon they may have some kind of mortality data somewhere that would help you balance your decision.

[mahootna]

@Bill1 

Hi Bill, you must finish your treatment.  Yes the mouth is painful but it will settle in time.  Took me a couple of months and I was on liquid oxycondine, morphine and duregisic patchs for a while.  Off my face there during that time.

My doctors said it was not side effects but as a result of having radiotherapy.  I wasn't able to even drink for about three weeks even with the liquid linacain mouth rinse.

One day at a time, one step at a time.

[CathV]

Hi Bill

I echo others and say finish treatment. It is awful and terrible it is true but stick to the course. Not long to go! Once the thrush is cleared up, you'll be a mite more comfortable. Me:  I was doped up and zombified for most of the final treatment leg. My mouth and tongue was so painful I stopped talking and eating for over 2 months. Believe me, it DOES get better - just think of that and hold onto that.

I am now 2yrs post treatment. My transplanted kidney has now got the disease my original ones had so I have some challenges ahead but - baby steps.

[Joolz]

Hi Bill,

I’m new to the game, well not me but my husband. I’ll chime in and say please, finish your treatment, take whatever pain meds they’ll give you to dull the pain, but please, you are so close to the end of the race. 

Sounds like the end of the race, isn’t actually the end, just the end of that battle. 

I’ve read through all 25 pages of this thread for the last few hours. 

Hubby is in hospital after having a peg put in, he’s week 3 into his treatment. He also just had his 2nd chemo. He’s had a bad few days and today was the worst. I left the hospital feeling afraid and confused. He said I don’t understand. It’s true, I can only watch and feel helpless sometimes. He won’t read anything, no literature etc so he really only goes by what the Drs tell him. 

I came searching for something to help me understand. Hearing your stories, terrifies me and at the same time it’s helpful. I would rather know what to expect. He has stage 4 cancer. Left tonsil, multiple lymph nodes, much like yours Bill. They can’t operate. It’s pressing on the jugular vein. It’s Squamous Cell Carcinoma. 

I was trying to get him to try some soup tonight, to just try. He’s lost 6 kg already and he’s not a big bloke. He was almost having a panic attack trying to eat. He’s right I didn’t understand. Then he vomited, over and over and brought up most of the tube feed that took 40mls an hour to go in. 

I felt terrible.I wish he would read these stories, not to scare him, but to know that others understand what he is going through. Somewhere to vent and get it out of his system to people who do understand. 

Thankyou all for being brave enough to share your journey. From a scared and helpless wife. 

[CraigJ]

Keep on getting treatments.

From my local Oral Cancer and my therapists, I learned that Most people had an easier time of it than I have. I was diagnosed a year with T4, N1, m0 P16 (hPV caused throat cancer. I had 33 radiation treatments and 7 Chemo treatments (cisplatin)... During the last few treatments I was at my low point. I had terrible mususctis,
I got Thrush infections 4 times. Eating was like swallowing needles.
Once the Thrush is rolled back by the meds, the eating pain is better and once my pain team got the pain meds right. We tried several dfferent pain meds, The pain team finally found what worked for me I added taking THC on top on the narcotics
Now Its a year after diagnosis and 9 months post treatment and I'm cancer free and the pain is less. I'm back to regular life.
Your focus has to be to do everything to be strong (day by day) hour by hour and get . through the pain and eat so you can live and let your body repair itself.
I found I was dancing with the oral pain all the time. I wanted to live and return to life. You can't believe how much pain you can live with and emerge. (medication and meditation helped me . There are two books that helped me...managing pain before it manages you by margaret caudill. nd the miracle of mindfullness by thich nhat Hanh
i totally understand the daily painful grind. but you can get through it. You want to kill that cancer as priority 1. you need to get and rest as priority 2.
i know its really hard. you can life going through the pain Once the thrush is managed (it only takes a day or two for the thrush meds to knock it back.. this get a little better. Find those baby steps that keep you on track and get yourself through it.
It's unbelieveable looking back what you can get through!
You've got to figure out what works for you. but you can do it.

most people don't have it this bad. My journey was much harder than most. I found the pain med combo that worked, The foods I could eat, and had CBD and THC in marijuana to help with the inflamation and pain helped me.
You need to live cancer free. You need to eat. you need time and patience. you can do it first hour by hour, then day by day, then week by week. I found myself thinking of all I wanted to live for and focused on these people and experiences i wanted again.
Craig Jacobson

[Bill1]

Thank you everyone....wow, i didnt expect that i would get all those responses....your words ring out in my ears and i will trudge forward to the last 2 radiations...one in a couple hours and last one Tuesday....i thank you all on this board for your support and knowledge...yes its a tough journey and rather unexpected one i would say...no one plans on something like this.

i will let you know how my body responds and the road it will take to get me to fully recover....

i can not thank anyone of you enough for your help and inspiration.....

Bill

[CaptainAustrali]

Good luck, dude.  Soldier on.