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

[Azjoetrucker]

Thank you, Bill.

Appreciate your tips and, maybe it's the state of medical care in the Good old USA where the business dictates to many  in the medical field to stick to just the job description...

   I'll take looking into working with a specialist into serious consideration.

Cheers from Arizona

[Sirdragon65]

Thanks for your responses.  I went to see the doctor today and my doctor sent me to get an echo to see what's going on and prescribed an anti-inflammatory.  I will see the doctor tomorrow so he can examine the echo and see what the path forward will be.  I will definitely let you guys know what he says.

So far I was able to weather the Chemo.  I have my next chemo next week.  I spent years doing Jiu Jitsu, so I am taking the old Jiu Jitsu mentality.  Feeling comfortable in an uncomfortable situation.  I know this will be a long road and week 3 in it seems like an eternity to go but I am, sure time will pass.  One day at a time.  As long and I can get rid of the cancer it's worth the every bit of it.  My doctors have warned me of how it may get and also post treatment side effects.   He said all of his patients react differently so there is no formula to predict how my body will react.  My doctor told me that it will be a long time before I will be at 80-90% but never 100% again.  He is radiating both sides but is giving a lower dose on my right side that doesn't have activity in order to try and preserve as much function post since my left side will be destroyed and said will probably never come back.  He told me that during post to take the little victories.  If today you wake up 1% better that is 1% more than yesterday.  My doctors are pretty honest with me but tell me to take the approach of not worrying until we have to worry.

The road does scare me but no pain no gain right?

Thanks everybody for you advices and sharing their experiences.  I have already used a few tips posted here. I am still eating solid food with a little discomfort but I'm constituently swallowing and drinking water, even though the water is starting to taste funny.  My goal is to eat solid until I can no longer even with pain in order to keep strong.  We'll see how that turns out.  I am starting to feel discomfort eating but it goes away after the first few bite.  I also found a humidifier a God sent.

Peace,

Ernie

PS:  I know it's about keeping a good attitude.  I leave this once Jiu Jitsu Quote

“Everyone is the same for the first two minutes, everyone has a chance to win, but after that you start to seperate physically and mentally.”
Marcelo Garcia

[Simmy63]

Hey Ernie - glad you're having the echo! Fingers crossed and sending positive vibes. Just think: You've Got 3 weeks down, so you're almost half way😁 Cheers, Sim

[Sirdragon65]

Good news!  The swelling went down.  Seems I was being not so smart sleeping on my left side and this past weekend I was  knocked out most of the time.  Doctor’s did say that my lymph nodes are swollen but the radio would be destroying them eventually so if all goes well it will eventually go down.  Maybe not until post but it should fix itself eventually.  

Now I did take that with a grain of salt because anything can happen from reading these forums.  Good news was that they were thinking of pulling the treatment yesterday if it was a tumor.  They did get alarmed but now they are more at ease!

[Simmy63]

That sounds very positive! You will get there- H O P E : Hold On Pain Ends😊

[Mozz]

{as for you doctors not telling about all of this ? my dr's never told me ONE THING and they lied...and still continue to lie...they told me never get a PEG, and gee what do you mean thick mucous, and thrush? thats very unusual..,etc etc etc...now they tell me just hang in there and you will be 100%....yeah right....they know nothing or they wont tell us what to expect or how to cope...they hide}

How are you going now Bill? I lol'd at your above comments. Sorry! But yeah, I know the feeling, they don't tell you what to expect in the side effects department. I think they know that if they did you would run screaming out of the consult room and never return lol.

My Dr's did say a Peg wasn't needed however you may need a Nasogastric tube  (i did) at some stage and that it will be Hell once the side effects kick in. That's about all they told me.

I'm almost 1 yr out of treatment and my Saliva function has not returned. I still find it difficult to eat many foods and they have to be sloppy and covered in Gravy and sauces etc otherwise I could never swallow.

Pills do get stuck in the back of my throat so I need to be mindful of that. I also have lymphedema in the middle of my neck. I do exercises to reduce the swelling but I don't think I will ever get rid of it.

[Azjoetrucker]

Hey Mozz-

   Thanks for the unput about pills getting stuck.  I'm 9 months out now and through seriously agressive exercises (google lymph exercises) and grueling upper body calisthenics...i seem to have reduced the neck swelling-and gotten the face recognisable again.

   I also use a tincture called Red Root which does seem to help unclog some of the lymph backup (every other week for 3 days, max 20 drops a day for me).

   The face and neck swelling was pretty bad so I think the regiment gelps that end.  I think the jury is out on the swallowing end of it...but hell, I can actually enjoy a beer once in a while again...

   Cheers, Joe

[CathV]

Hi all

I've had pills get stuck in my throat. Luckily for me, my saliva is sort of OK and I don't have too much trouble with eating, although I do wake up in the morning with a dry mouth. I wear an obdurator because the hole in the roof of my mouth made to get the tumour out, never closed. I don't know if I want further surgery to try closing it again ... My main side effect is dry nose from the radiotherapy. I've had several bad nosebleeds due to the friable state of my blood vessels. Last week I had to go to ER because I had a bad one. Just discharged from hospital last Monday. I've now got a tiny wire in my head blocking a vein.

Catherine

[mahootna]

@Mozz 

Hi Mozz

I am six years post treatment so have a pretty good handle on what life will be like for you from now on.  The saliva function never fully returns as the radiotherapy treatment kills some of the glands and they never repair.  I still have to cover most meals with a gravy or sauce.  My other go to is plenty of home made soup which I can eat no matter the weather.  Also most lunches are campbells country ladle creamy chicken soup as I find this the easiest.

Eggs in the form of an omelete are also easy to get down.  I find scrambled eggs a little difficult as they break down.

There is a long list of foods I will never eat again and trying to get people to understand is the hardest part.  It makes going out for meals very difficult.

Also my tastebuds have been affected as they took a large part of my tongue.

Doctors don't tell us all the "side effects" as they are many are vary from person to person.  Doctors at Fiona Stanley ENT actual say as a result of instead of side effects.

Please go and read some of my posts and you may get a better idea of what is in store.  I manage as best I can and along with caring for my wheelchair bound husband each day brings new challenges.

Biggest upside for me is that now my weight is under control for the first time in my life.

You will find a way to cope and sort out what works best for you.  Hope you have a long life.

[Bill1]

Hi Mozz

well i am 4 months post chemo/rad and still not eating anything...the smell of food makes me sick...my wife has lost 10lbs since i do the cooking and she is eating what i can make etc...

my mouth continues to go from dry as the desert to foamy like a rabid dog to sticky and disgusting and a few others....at night i have trouble sleeping since my mouth and throat are so dry my tongue sticks to the roof of my mouth and i need to take a swig of water but my mouth feels numbs afterwards...the doctor has never heard of it ??????????????????????????????

my taste buds are zero...nothing....sweet applesauce tastes like sawdust and water...it is not that i CAN"T eat its i have no interest in eating saw dust and water ???? the peg is handy...holding my weight

i try once or twice a week to eat something and can...but i regret it...such a bad experience of what it should taste like ant what it does taste like

my dr GUARANTEED ME several times since he only shot one side of my mouth being the left tonsil that the right side would be 100% right out of the gate....right

i have lymph-edema also in the neck....

i am getting nervous now 4 monts post treatment to be like this when on my last treatment he said 2-6 weeks i would be fine....

to my Dr. i guess i am the mystery man.... 

hope this is not forever....

i can take 3-4 vitamins at a time down the hatch etc...drink etc eat etc without trouble...of course if i try a piece of meat my mouth goes like a sponge to water and i gag if i dont drink etc...but my throat function is 100%

hoping i can eat someday soon ?   4 months out like this to me is a big red flag