Counted my chickens too soon....radio side-effects really ramping up

Hi Chris three to four weeks is when the side effects do start, keep your team updated on everything you have said here, they can give you something to ease them. Do you have a feeding tube, if so, have you started to use it yet? If you don't have a tube, you could ask them about having a NG tube, lots of people have them fitted during their treatment. My wife applied Aloe vera gel to my neck after each RT session, that seemed to work quite well, use it only after not before. 

Ray.

Hi Chopeses  at four weeks I couldn't swallow so had an NG put in. Is that an option? Optimising pain relief is crucial. I had long acting morphine with oramorph and paracetamol every two hours. That kept me comfortable. My neck didn't break out but Hazel's did. She has a piece in her blog.  I have sent you a friend request and if you accept I can send you a link. Your RT team should get you some cream to apply, there is the option of a badge called Polymem and if I recall Hazel was wrapped in medical clingfilm for her sessions.

Chopeses said:

Does anyone ever call a premature halt  since presumably the 80/20 rule might apply in terms of efficacy of the radio?

This has come up a few times here. Missing 30% of your dose poses a serious risk of the cancer returning

Stick with it. Your neck will heal fairly quickly once the radiation stops. 

Hi Chris

Everything I ate tasted so foul that I gave up trying by week 4 and found I could get more calories in drinking the supplements. I managed without a feeding tube but it was tough. I used Aveeno and Cerave cream on my neck. The skin became very red but didn’t break down and it did heal within a week after treatment finished. 

Please don’t give up now! As Dani says, it will seriously pose a risk of the cancer returning.  You will get through this, you’ve come this far.  Do voice your concerns to your RT team and your CNS. They will be able to help and reassure you. 

Sending hugs

Ally 

Thx all for the replies. No PEG yet and can still swallow OK. Looks like perseverance is the name of the game... and the search for something edible continues!

Chopeses said:

and the search for something edible continues!

In extremis just get six or eight Fortisips or Ensures down. They will keep your weight up and they are free

Hi Chris,

Never heard of the 80/20 rule you are talking about, but if they've said you need 6 weeks radiotherapy I suspect it's because you need 6 weeks radiotherapy.

Like you I had TORS and neck dissection and it takes longer than you think to heal fully so give it time.

Taste change is normal and will come back to varying degrees after radiotherapy finishes. I looked at food as being another form of medicine to get me well again. Whatever I could swallow I swallowed. I didn't care what it tasted like unless it was so gross it made me want to vomit (avocado!). Without wishing to sound harsh, this is cancer treatment not a fine dining experience. 

I made a pint of smoothie everyday with high protein yogurt, full fat milk and fruit. I'm sure that did me good.

None of this is easy. It might be tough but it's got to be worth it, so don't give up now that you are so close to the end. 

Hi for the neck I burnt badly as biggest lymph node aka”

Larry was extremely close to skin surface. From week 4 I had 7 weeks if radiotherapy I was wrapped in hospital grade cling film for  the treatment then after given a polymem bandage to use into next days  treatment then repeated. My neck healed around 4 weeks after and is as good as new. I never losttaste but everything was over exaggerated. I couldn’t swallow sufficient calories from week 4 so ng tube fitted. it enabled  my recovery to go well abs  by week 3 I was able  to swallow and eat soft foods enough for  ng tube to be removed. Don’t struggle as it will continue for several  More  weeks. My tube was my lifesaver. All Medication feeds and hydration went via it. 

Hazel x