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

[Mozz]

Hi April,

Very sorry for the much delayed reply, been going through a bloody nightmare!

Yes I do have good support through family friends, Sometimes though I would love to tell them to can it. I know they mean well and all but it can be a bit much to take at times.

RE Peg: No I do not have one as I have Afib so  I am on warfarin, they were reluctant to put a peg in incase it brought on bleeding. They have offered me a Naso gastric tube but I only have 10 more days to go and one chemo session left this coming Monday.

Radiotherapy ends on the 13th and at the moment I have the most aweful case of oral thrush I have ever seen, the pain is through the roof with it. I'm eating weetbix morning noon and night with baby food lol.

Lost a fair bit of weight which the Doctors are not hapy about, they have been giving me these foul tasting protien drinks loaded with calories. Ah, the mouth exercises they want me to do too as I am developing Trismus.

 I'm not really drinking much fluids too due to the trush so may need to relent on the feeding tube to stay hydrated. They put me on Fluconazole to treat the thrush today so hoping that kicks in soon and clears it up.

I have been so tired of late though I am guessing that is due to large amounts of Endone I am taking.

Everything tastes utter crap no matter what I try, then there is the thick ropey mucus at night that Capt Australi mentioned. I never thought it could get so bad.

Only ten more days to go...I know I will putting up with these side effects much longer than that when treatment ends.

I did have a Pet scan on the 19th of February and that showed the cancer in tonsil or what little there was there is now gone. There was a small part of cancer on the base of the tongue which has now cleared as well.

The lymph nodes show the cancer is being wiped out.

In my opinion this type of treatment is one of the most brutal one can go through with head and neck cancer.

They do not really tell you what you will actually go through with this treatment and how you will suffer. I suspect the reason for that is most would people get up and run out of the consult office screaming.  😄

Anyways, I hope this see's you all well.

[CathV]

Hi Mozz

I hope you are powering through the side effects - they sure pack a whammy. But keep on keeping on, there will be light at the end of the tunnel. We are here for you!

It will fade into the past and you will have trouble remembering what happend when. All I can remember is that at one point (I had a rare sinus cancer) I couldn't talk anymore because it was too painful. I stopped eating solid foods and was on a combination of endone and another opioid (which I hated because it zombified me - it upset my husband very much). I stopped eating solids and was just eating things like yoghurt, custard, pureed fruit (SPC make good ones - also try baby food!) but then I stopped that too. I was put on some nutritional drinks which I found too thick so the nutritionist suggested 1/2 drink and 1/2 water. I found that I could only manage one a day but I was supposed to drink at least 2. Of course I lost loads of weight which I am slowly putting back on. I remember feeling scared about eating again and I remember the first time I tried solid foods - at a FoodBank warehouse tour in mid Sept I tried two 1/4 sized sandwiches. Wow!

Take preventative constipation measures - I didn't and boy, never again will I ignore that advice! Take what they suggest!

Bit by bit. 🙂

[mahootna]

Hi Mozz,

I don't post much these days as I am 5 years post treatment.  I can relate to the problems you are experiencing as mine were very similar.  The main reason they don't tell you much about the side effects is because they are vastly different for each patient.  As we are all different so the reactions are different, thye can only give us advice in general terms.  I also had severe oral thrush and still get it on a regular basis.  
This is due to having compromised saliva, some days almost none.  I will have to take Fluconazole at least twice a week for ever or until it affects my liver.  I was also very tired for months after treatment and then due to a diligent doctor we discovered my magnesium level was dangerously low, took supplements and it helped although I still have bouts of low levels.

Some things will improve over time and others may never return to normal.  Even after five years my taste is still very much hit and miss, might have something to do with the fact that partof my tongue is actually from my forearm.

Even after all this time some days are a struggle particularly when everyone else is enjoying those foods I can no longer eat, such as fresh sandwiches.  I have learnt to adapt some things and there are a few softer foods that I love so enjoy those.  When going anywhere that you are asked to contribute food, I take what I can eat and everyone is happy with that.

I haven't had a can of soft drink since the cancer first appeared as the bubbles now hurt my tongue, funny sensation.  This is a good thing as it helps me keep my weight in check.

Let people around you know that sometimes you need a break from all the well wishing and positive reinforcement, those that really care will understand.  I have told those closest to me that I do not want to here the saying "but you are still here".  I have lost some very dear friends and family to this disease and sometimes it hurts when someone says this throw away line.

Most of all be true to yourself, be in this fight for you and remember to put you first sometimes.  Life will never be the same and you will learn to adjust to your new life in time.

All the best and may you also be with around to celebrate five years post treatment.

[Mozz]

G'day Mahootna,

Yep one certainly does go through the wringer with head and neck cancer. You seem to have had it a bit rougher than Me. I don't know if I would have coped so well as you have.

That thrush can drive you nuts, the burning and stinging you get in mouth and throat particularly after eating. I would want to hope when my treatment ends on the 13th that I do eventually get my taste back and the thrush healing this is what lead me to having an NG tube placed in today.

I was a bit wobbly after today's radiotherapy session so they sent me down to the Rad bay and had nurses check me out.

There they discovered my blood pressure was pretty low, 95 over 65 and a super cracked tongue as well as the mouth ulcers and thrush. They called one of my treating Oncoligists down and He decided I was dehydrated and not getting enough nutrition.

They put me on a drip to get fliuds into me and then placed the NG tube in via camera or with the aid of a camera. I could see the thrush all down my esophagus tube as well as more ulcers. Having the NG tube put it wasn't a pleasent exeperience either.

They asked why I wasn't eating and drinking much and I expalined to them that everything... fluids and food tatses crap and I could no longer stomach food and drink.

Had the dietician come visit me in the rad bay and She explained how to use the NG tube and cleaning it etc and to have 6 bottles of the stuff She gave me per day via the NG tube.

Back of my head is going bald too, clumps of hair falling out. Not sure if it's the radio or chemo doing that?

My Oncologist was surprised and  told me I did very well to get this far without a feeding tube. Then I surprised Him by telling Him I too am surprised I got this far without telling you to shove it!  😄

Yeah mate I know life will not be as it was before. I would like the old me back not the new Me.

I would have thought the chemo would have been far worse than the radiation. For me, I found this not be the case. I have had vitually no side effects with the chemo apart from consitpation. All the side effects seem to be from the radiation.

I can tell you one thing...I will never subject myself to radiation treatment again. When this over that's it I'm out and done.

Wishing you all the best Mahootna for now and in the future.

Maurie

[April-Showers]

Hi Maurie,

Really feeling for you here!  You are in the thick of it right now, things will ramp up in the last days and all you can do is ride with each punch as it comes.  That is the bad news....the good news is you are on the home stretch!  You are almost there....then there is healing. 

Really protein is the golden source of rebuilding the rad damage, externally but more importantly internally.  As soon as you finish treatment your body starts to rebuild and each day will be better than the other.  However, it does take time things don't happen over night.  You really need to focus on your protein intake I can't stress that enough....water and protein.  If you don't mind me asking where are you being treated?  You will hopefully receive the excellent after care that I received from oncology nurses and the Oncologist towards healing.  

Right now focus on resting as much as you can....follow what they have told you about protein intake through the NG tube....don't give up the fight!  Remember nutrition is something in your power right now....make sure you are getting it in.  Set your body up to be able to fight, right now it is taking a beating but the body has an amazing way of fighting and I think all of us that have experienced what you are going through now have witnessed first hand the amazing healing power of the body. 

I felt exactly the same as you with wanting to tell the rad department where to stick the treatment.  I told my oncologist in the last two weeks of treatment I couldn't go on....I couldn't do it.  I told him I wanted to stop treatment and whatever happens happens.  He heard me out and of course gave me stats .... then he said to me you have four kids and a husband you have every reason to live.  I was at breaking point but it helped me refocus away from myself and what I was facing, to the bigger picture. 

The effects of treatment felt like a walk close to death, undoubtedly the lowest point in my life but it helped me to appreciate so much in life.  There is hope....keep fighting!

[Mozz]

Hi April,

First allow me to apologise for my spelling on the last post. I was all over the place lol.

Yup! I had that talk with my oncologist about quitting treatment too. this was mid last week, I'd reasoned i'd done 6 weeks or just about and that should cover me. He explained to Me that treatment was almost over so why throw it in now? He also said...you quit now, you may be back here in 6 months at square one but this time we can't really hit with radiation and you will end up dying.

Apart from letting Him have a piece of my mind with the side effects and it (Radiation Therapy) being barbaric I decided to hang in there.

I'm being treated at Liverpool Hospital in Sydney. My radiation Oncologists are Dr. Fowler and Dr. Trad.

My Chemo Doctor is Dr. Victoria bray.

The staff have been wonderful, no complaints there. Guess I wont be having the scrambled egg sandwhiches in chemo tomorrow now I have the NG tube.

It would be great when I have the last treatment that all side effects went away I know though this is not the case. I expect i'll have the NG tube for a good month after last treatment and that it will or could possibly be many many more months before things begin to return to normal.

I must say that I am more shocked about the side effects I/we are going through and or went through. I knew they would be rough but...Not this rough. Being told by my GP that I had cancer in the first place didn't freak me out. I reacted as one would being told you have the Flu.

Thank you for the advice April, I have taken it onboard. Anything to make last stretch more bearable is very welcomed.

Wishing you continued good health

Maurie

[April-Showers]

Thoughts are with you this week Maurie as you go into the home stretch!  One day over, one day more you don't need to put that mask on and get radiated! 

I thought perhaps you were in Melbourne as a lot of what you were saying about the approaches from the ocology staff for managing the side effects are very similar to what I experienced at the ONJ Cancer Centre at the Austin here in Melbourne.  There are some very special people working in oncology...

Soon you will be looking back on this Maurie and like us, you will pop back in here to share your recovery and "new normal" experiences.

 Hang in there my friend, it's almost done!

[CathV]

Hang in there! Just plod through it - you'll get there. I had a noticeboard on the fridge with a countdown - that helped to show me how many I had done and only the very few that were left. The finish line is getting closer.

I was at ONJ too AprilS. I finished my radiotherapy in August 2017.

[CraigJ]

When my mucositis was at its worst I was in the hospital and a divine Speech language pathologist got me a yankower suction device and a suction cannister to "vaccum" the phlem out... I ad buckets of it. It was my savior device during that pase of challenge ( there are many phases of challenge for us)By the time I was released from the hospital the phlegm was better... I did order from And a home suction device ( which I never used)...
Yes you must maintain your weight... I lost 45 pounds before I've stabilized my weight.
I drank alot of Ensure and Boost and Soylent for nutrition. I'm still drinking it for calories. I worked for me. 2k calories is like 5-8 of these plus other food.

My Doctors did get me IV saline for the dehydration and passing out from dizziness... It helped me stabilize until i could drink enough

[RichW]

Hi all,

I wanted to thank all the people who have posted in this thread their experiences of head and neck cancer treatments!

My father is about to undergo Radio and Chemotherapy for a small cancer that has been found at the base of his tongue. (lymph node on neck swelled up which started all this off)

So I wanted to do some investigations on his behalf to prepare as much we can for the 6 weeks ahead (starting monday).

And the details people have posted of what they have gone through are quite upsetting to read as I hate the thought of him suffering. But its so much better for me to know some of the things that might occur so we can be on the look out and ready act preventativly if necessary. Thanks again for this!

I do have some questions in terms of the day to day experiences. Once you a several weeks into the therapy do you pretty much spend most of your time in bed? Or are you able and is it recomended to go for a walk or a drive just to break things up a bit. I'm guessing things like speaking will become a struggle so any tips for communicating? I'm thinking WhatsApp will be good plus the obvious sign signals etc.

Cheers!

Rich