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