Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

tonsils v swallowing re upcoming radiation treatment

Jaffa44
Posted by

Hi Everyone

Hope you don’t mind me joining in? My partner was diagnosed at the end of April with HNSCC, following lump in neck that was diagnosed as lymph node with cancerous cells at that time the primary was unknown as neither MRI or CT scan could find it.  A PET scan showed irregularities in his left tonsil which was removed along with several biopsies in the area.  The pathology showed that the left tonsil was harbouring the tumour which was “strongly P16 positive”.

He started treatment at the RM on 27th June, 30 times radiotherapy, 5 times a week and 1 chemo on day and another on day 21.

Friday was day 12 or 40% through treatment, as you can see we are ticking off the days.  His tastebuds have definitely been affected but he is eating well so far, although his throat is starting to feel painful. I know the worse days are ahead but am trying to support him as best I can.  He is happy not to research or join forums but I’m the opposite as I find it helps me, we all find our own coping mechanism I guess.

He is using R1/R2 gel and cream, which we found online, the gel you put on the area that has been treated as soon as possible after treatment and the cream 2 to 3 times a day.  Has anyone else used this?

Just off to concoct a delicious breakfast for him but I’ll be back later.

Thx for being there everyone.

Margaret853
Posted by

Hi Jaffa44

Welcome to the group and feel free to join in any of the discussions, I'm glad that you've found us. 

It's good your husband is still managing to eat.  Is RM The Royal Marsden?  A friend had her breast cancer treatment there recently and they looked after her wonderfully.

You're definitely right when you say we all find our own coping mechanisms.  I was all for joining forums and support groups, but my husband was the complete opposite.  

I've heard of the R1/R2 cream and gel but I didn't try it myself as I had something different prescribed.  

Carry on counting off those days.  We did the same each day and it seemed to help to be able to see the end of treatment getting closer.

Best wishes to you and your husband.  xx

"Life might not be the party we were expecting but while we are here we should dance."

Jaffa44
Posted by

Thx Margaret and yes The Royal Marsden....

i love your tag line about the dancing btw, I couldn’t agree more. 

Bluebird6
Posted by

Glad to hear things are going as well as can be expected with the treatment, hope it continues to be as good as possible. Interested in the cream you mentioned, my hubby is about to start chemo radiotherapy on Tuesday and would be good to have anything useful in readiness. Interestingly my hubby is scheduled chemo every week, not sure why things vary from place to place, but you can’t get much better than the RM. 

hope all goes well

L

Jaffa44
Posted by

Hi Bluebird

The R1/R2 is a two step treatment, not sure I’m allowed to post a link here but google waterjel R1/R2, it’s a two step treatment, the R1 you use as soon as possible after the radiotherapy, it’s a gel which cools and soothes the area, it penetrates the layers of skin so to my mind is worth a shot at minimising what after all is a burn to the area.  The R2 is a moisturiser to be used 2-3 times daily.  It’s a six week course and isn’t cheap, you might be able to get it on prescription.  I just wanted to feel proactive so ordered it and The other half finds it very soothing after treatment.

It’s weird about the treatment regimes as they do seem to vary but I imagine it’s not an exact science....

Good luck and let us know how you get on. x

Bluebird6
Posted by

Great thank you, will investigate that! 

Will look out for your posts to see how things are going, and post up dates on how we get on. 

L

Margaret853
Posted by

Hi Bluebird6

Before you start spending money on creams, or anything like that, it's best to speak to your husband's medical team.  Everything he needs should be available on prescription, and all cancer patients can apply for free prescriptions.

I did buy a few non prescription items but my team always wanted to know what I was taking/using as some products aren't always suitable for everyone during their treatment.  There were a couple of things I wanted which I wasn't allowed to have.  

Best wishes xx

"Life might not be the party we were expecting but while we are here we should dance."

Bluebird6
Posted by

Hi 

Thank you, I will certainly consult the medical team first, things do seem to be different from place to place, so always good to hear about what’s happening elsewhere , anyone else using this?

best Wishes 

L

RadioactiveRaz
Posted by

Hi 

please be careful using non prescription creams and lotions without prior approval from radiotherapy team as if any problems occur they have to rule things out. I a man 10 month post radiotherapy for right tonsil cancer I did get a 3 rd degree neck burn my oncologist knew from day 1 that I would but like he said what was the point in telling me and have me worry. In my case several factors that I had no control over no amount if cream would have stopped it

1 female

2 very fair in and freckles 

3 the biggest lymph  Node  was very close to surface I’d skin near collar bone. 

Therans did all they could to alleviate the pain for me once my skin erupted every radiotherapy session I had cling film put over burn area before mask was put on .when treatment had finished I had the best burn bangpdages that the n h s could give me and I needed them for 4 weeks. 

But remember not everyone has the same side effects just please don’t use anything that’s not  approved. 

I have a blog showing my progress I too was h p v 16+ 

Www.radioactiveraz.wordpress.com

good luck for rest if treatment 

Hazsl

RadioactiveRaz 

Bluebird6
Posted by

Hi Hazel

Thank you, yes will be careful and check before using anything, they have told us already it will break down, it’s a large node as you say, they said to moisturise the area, obviously non fragranced stuff. 

L

Beesuit
Posted by

I had Diprobase but luckily didn’t react very much

Bluebird6
Posted by

Ok great thanks!

L

Alichapp
Posted by

As others have said, reactions vary a lot. My husband (30RT to the neck and jaw for tongue cancer + one affected lymph node) did not get any skin breakdown at all, though it looked a bit red and was sore as if he had got a nasty (but not blistered) sunburn. He was not prescribed cream, but told to buy E45 as it was cheaper for us to buy over the counter than it would be for the NHS to prescribe it! The E45 was very helpful from a comfort point of view and probably helped prevent flaking or blistering.

magictree
Posted by

Bob got prescribed zerobase at the hospital and used it religiously until his second round of chemotherapy as the smell made him vomit so he switched to good old e46 and the results have been amazing. Yes he had horrendous burns externally but they only seemed to appear on his last day of treatment  and lasted a few weeks. They gave him a dressing but actually it made him too hot so he couldn’t use it. He had horrific internal burns however from week three which took a long time to heal. He is now 4 1/2 months post treatment and the internal burns have gone, although drinking fresh orange is still nippy. Still experimenting with different foods as some still taste disgusting and some are too hard to swallow. Still lacking in saliva so bread and cakes are just rubbish but on the whole he is doing well! Hope all goes well for your husband xx

Bluebird6
Posted by

Thank you for your reply, do good to hear from people who are on the other side, we are anxiously facing the start tomorrow and trying to prepare as much as possible but so good to hear your husband is doing well after the treatment.

L