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

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

Hi Joe

yes, thats aggressive but may be beneficial....i mentioned it to the dr and he looked at me like i just landed from outer space which leads me to believe it will work!....they know nothing....he said forget about it and let take its course....right

 

thanks for all your advice and i am watching to see how far this mucocitis wants to go

 

regards

bill

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

wow, all your fillings are starting to fall out !!  my dr. said no problem getting cleaning 6 weeks out and even fillings....luckily i didnt need fillings but my dr. said cleaning and fillings and fine but NO EXTRACTIONS....i understand extractions are the kiss of death for LIFE with what we have ?   who do we believe...

 

keep the faith, i am trying to....time may heal  some of this pain and agony like many have written is the case for them and i look forward to the day

 

regards

Bill

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

thanks for all that info....yes magic mouthwash helps but here is sort of weak and doesnt last long....i am keeping an eye on the mucositis to see if it spreads....

 

wishing you a clear PET...keep us all posted....

 

point of interest...i had a PET 3 months out and i asked my radiologist when is the next PET and he said NEVER....i said NEVER and he said i have been doing this over 29 years and i NEVER do another PET unless while scoping or patient eval shows a possible problem then i scan but it happens far and few between and he said with tonsil and throat he has never seen a re occurrence of cance  ????

 

the schedule is to be scooped every month....one by him and next month by ENT....i asked my ENT about the PET and he said the same thing...NEVER

 

my chemo radiologist said he would do one 6 mo out...when i told the other 2 doctors they said they would never ever do that without symptoms but i can do what i want....

 

and people wonder why they call it a practice.....i see new advertising all the time Dr.xxx opened his new medical PRACTICE and is accepting new patients....scary stuff

 

regards and stay well

Bill

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

Bill - same - in the US they said they do not repeat the pet ever.  They said very honestly to me - it will never be approved by your insurance so we don't do it.  You just have to watch for symptoms.  I am not sure how that is feasible since re occurrence of nasopharyngeal pops up anywhere in the body.  But what do I know...

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

Hi Bill,

 

RE: Pet scans. We have universal health care in Australia under Medicare so most scans and pathology are covered by the Government. Hospital admissions, surgery etc bar dental are all covered by Medicare.

 

You pay a Medicare levy of 2% of your wage which goes to covering Medicare. It depends on your earnings so you might pay higher percentage of your wage on Medicare levy if you earn more.

 

That said, I had my first pet scan halfway through treatment to see how I was responding. I then had another pet scan 3 months after my treatment ended and then again 3 months after that.

 

Last time I saw oncologist they just stuck a camera up my nose and down back of throat and prodded all the nodes in my neck.

 

They have since arranged this coming pet scan at 1 year out to see if I have had a recurrence. I have been told after this one if I get the all clear that will do pet scans at 6 month intervals for 2020.

 

From 2021 if I'm still here lol they will only do one pet scan per year for the next 3 years. After that they tend to lose interest  and you have just a quick check via a camera up the nose and down throat yearly.

 

cheers

Maurie

 

 

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

hi Maurie

yes i do imagine its all about my medicare insurance...but the dr's dont say that...my wife thinks i really need to get a PET at 1 yr ???

 

i will discuss next visit....

 

thanks and good luck with yours.....

 

regards

Bill

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

Hi all,

 

My father had initially been diagnosed with T3N1M1 on his right tonsil back to June Last year. He had been giving 7 weeks radiation and 4 chemo (1 Cisplatin and 3 Carboplatin) in Sydney St Vincent Hospital and all these treatments had completed on 2nd August. He had a PET scan early November and the report came back showing he was all clear at that time. However, he has started feeling unwell, lost weight and also noticed something on his right tonsil growing again about two weeks ago. He had a scan and report shows the cancer recurred in the same place- lesions in the right base of the tongue that are likely to have malignant tumours.

 

The radiation oncology did my father's previous treatments told me their approach in this situation is: If small recurrence only, then surgery if possible but usually it is very big surgery; If larger recurrence or it has spread then chemotherapy, as my father had cisplatin not that long ago here they would use immunotherapy, nivolumab or other immunotherapy available on clinical trial.

 

Please everyone, if you have ever heard people had experienced a head&neck cancer recurrence that happened only very short period of time after the treatments, could you let me know? I'm keen to find out how bad the situation is.

 

I'm devastated and hopeless. I know how amazing people are in this forum. I read all your comments when my father had been having his previous treatments and I had acquired tons of information we need. I can't thank you enough for that. When I was told this terrible news, the first thing I could think of is to find help from here.

 

Looking forward for your replies and for the bottom of my heart thank you for any help you can offer.

 

Regards,

Sheryn

 

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

Hey Sheryn

 

It's a really shitty thing - but if the cancer is going to recur, it typically does right away - ie in the first year.  Each year after treatment means less likelihood of recurrence.

 

I could never wrap my head around the math, at one point after treatment and a clear PET scan, a doctor said to me "your odds are about 95%+ that you've beaten the disease"

 

Then in the first year of review another doctor said "in the first year, with your staging, you have about a 30% chance of recurrence". 

 

So it beats me.  Ignoring probability, it does happen, and the later your staging, the more likely.  I think my disease was more advanced than your dad's, but I just got lucky (touch wood)

 

Things I've heard about treatment options:

I was told that if I have recurrence, radiation was not a possible pathway.

I was told that surgery was the only option, but after radiation my H&N cancer will have shrunk to a size that surgery becomes viable.

I was told that the complications and impairment from a H&N surgery can be pretty devastating, they have to break, remove and rebuild your jaw, important nerves can be severed, all kinds of nasty stuff.
BUT, I've also heard of cases where people have had supplemental radiation when the cancer recurred in a nearby area.

I was told that for tonsil cancer, supplemental chemotherapy is useless, at treatment it only increased the success rate by 2% (for me), the main gun brought to the fight was the radiation.  The radiation oncologist said that if you suffer a recurrence, more rads is unlikely, more chemo is useless, surgery is the only pathway, aside from new emerging immunotherapies.

On immunotherapy - I've also heard of some exciting successes -- my step father was in late stage metastasised cancer - lungs, pancreas, basically all over .. he was in palliative care with weeks to live.  He began an immunotherapy trial and about 8 weeks later they were cautiously using words like 'remission'.  He still ended up dying, but he got an extra couple of years.  (Don't let anecdote colour your expectations though, just suggesting it's worth looking into and asking all doctors)

 

As a cancer sufferer, I've had to prepare for death, I've had to look that in the face, and in my experience, not shying away from it is the best approach.  I hope your dad survives, and I wish you the best - but given the seriousness of the situation, make sure that you do and say anything that needs to be done & said, and enjoy what time remains available.  (None of us know when we're due to shuffle off, so that applies equally to everybody, I guess)

I reckon a recurrence that early post treatment sounds pretty grim, and I'd suggest leaning heavily into it - interrogating all the doctors on every viable treatment pathway and it's chances of success or lengthening his life.  (Then make an informed choice) 

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

Hi Sheryn, 

reading your post really resonated with me. I had the same cancer and treatments as your dad just over 4 years ago now and I am still attending ENT quarterly. I am very interested to know what the pathway is now for your dad as I still worry about recurrence near daily.

My thoughts and prayers are with you and your dad.

Shaun

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