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

[CathV]

Hi AprilS - my last appt was on Feb 7th and I now only have to have an appt every 6mths! I just have MRI scans twice a year. I hate them! My oncologist is Mori Wada but I do see other oncologists sometimes. Mori is great - last time we had a nice chat about Japan. The staff at ONJ are great aren't they?

[April-Showers]

Excellent Cath....the only good thing about mri is when they come back all clear!

[Rahul14]

Hi guys, my dad 62 was diagnosed with stage 2 tongue cancer. T2n0 to be exact. All the lymph nodes came back negative. He will starting radiation in about 2 weeks but the doctors don’t know for sure if he will be doing chemo. I have been reading everything i possibly can on radiation and chemo, i know its going to be a tough road. I will keep everyone updated through our journey which is about to start. If anyone has any suggestion on what should we do prior or post radiation or chemo please let me know. Thank you

[Mozz]

Hi Rahul,

First up He will have to see a Dentist and may need some teeth removed from top and bottom at the back before they can do Radiation. Have Him ask the Oncologists about these drugs... (Scopoalime Patches and Glyocoprrolate oral injections).

They may protect His throat and mouth from Mucositis (Mouth sores and Ulcers) There is another one called 3 D Block that can protect mouth as well. I wish I knew about them before my treatment. some of them may protect Salivary glands as well.

I would advise having a Peg (feeding Tube) placed in now before treatment starts if they cannot give him the drugs to protect His mouth. Or, a Naso Gastric Tube put in about weeks 5 and 6 as He may not be able to eat or drink anything by mouth due to Mucositis.

If your dad needs a feeding tube or naso Gastric tube they will offer high protien drinks which you will have to pay for I think $48 a month. If he has to go on these then get Movicol and Coloxyl and you may need to take them morning and night as the protien drinks are like Cement or will come out like Cement and He may do some damage to his back side as in tearing it when passing a bowel motion and believe me it is not pleasant when this happens. So a stool softener is must!!!

Drink, drink, drink plenty of water to during treatment or put it down the tube.

Radiation burns on each side of neack are possible, they give you creams to put on neck during treatment. With me, they didn't really help and by the time i finished my treatment the skin on my neck was peeling and blistering and it got infected in which I needed dressings and antibiotics.

I would bring up with his Doctors about taking Fluconazole  to take as a prentative measure against Oral thrush. He may need that from week 5 onwards. Oral thrush isn't nice either on top of Mucositis.

There will be big changes to his sense of taste and saliva. Both these issues will take a long time to resolve and may never fully resolve to prior to having radiation. he may be lucky and not have many issues there so i wish him the best of luck.

I'm still using a Naso gastric tube for food, my treatment ended on the 13th of March. I have tried to eat some foods but lack of saliva and the fact everything tastes disgusting keeps me using the Tube.

i wish you both the best of luck.

Cheers

Maurie

[Rahul14]

Thanks maurie, my dad doesn’t have any teeth so that wouldn’t be a problem and i will def ask every single thing you mention to the doctor. I saw a post where someone mention neubulizer to help with mucositis. Do you think that will help during radiation? If yes then where should i buy one (amazon)?

[April-Showers]

Hi Rahul,

Sorry to hear about your Dad, it really is the pits, both the diagnonis and the treatment.  But we are all here as evidence that your dad can get through and come out on the other side.

The use of a neubuliser was extremely helpful especially once the mucositis sets in and even the gradual onset of it.  I was using it before rad treatments just to get me through the session without gagging on the mucos while I was having treatment.  The musositis started for me around the end of week 3, and it gradually gets worse.  The rad department would administer any b4 treatment but as I said by around the end of week 3 I needed a neubiliser at home to use more regularly.  The oncology department gave me one to lend, so don't buy one wait until things happen then your oncology department can help you out.  You won't need it forever so no need to buy one, I used it for around 6-8 weeks then as the mucositis started to settle I didn't need it.

All the best for your Dad, he will be needing all the support he can get.

April 

[Rahul14]

Thank you. I hope he gets through this quick. 🙏🏼

[Debnova]

Hi everyone, 

I am 6 weeks post treatment. I wonder if you remember how long you were fatigued? Also, is your mouth still drier than normal? Changes to your voice? I sing, or sang, so my voice matters.

Thank you 

[CaptainAustrali]

Hey There

For me the first 2-3 months out of treatment were pretty bad, with things gradually starting to ease off from there.  I had bad mucositis though, if you haven't experienced that, then you probably have an advantage in terms of quicker recovery.

Dry mouth:  it continues to present day (almost 3 years out), and although subjectively it's gotten a bit better, it's still a big problem.  If you carry a water bottle around, it doesn't interfere with your day-to-day too badly though.

I can't speak to professional singing, but I was able to serenade my wife on our 10th anniversary, can certainly sing/talk for stretches of time with no real issues.

But yeah, in terms of timing, I wouldn't expect too much in the first few months.  It's better to be pleasantly surprised than disappointed.

[Jen827]

This thread has been beyond helpful for me.  I finished my treatment for Nasopharyngeal Cancer 18 days ago and I’m beyond impatient to feel better!  I know you all know how that feels!

i have read through the entire forum twice so I know everyone’s experience they have posted.  I have severe Mucositis with a feeding tube.  

What I am wondering is when did you start to taste anything or eat?  Did you eat just to eat despite the horrible or absent taste?  I am not someone who can successfully get anything down that is disgusting.  I know a lot of people start eating after five weeks or so but is that with taste or just to eat?  I think this part is clearly something I’m obsessing over.

Also - I started losing hair a week after treatment ended.  I expected the areas that were radiated to shed but not the rest since my chemo does not cause hair loss.  I am losing it all over now.  

I did 35 proton radiation treatments and only 2 high dose doses of Cisplatin (too toxic for final dose).