Hi all,

Recently finished my IMRT for tonsil cancer on 11th June. At my last consultants meeting (day before treatment ended) he warned me that the next few weeks would feel a bit emply after the daily grind 4 hours travelling and treatment.

Since then I have been on daily oramorph, the consultant gave me a prescription and advised does of 5 or 10ml taken 4 hourly and could top up as required.

last week the oromorph was about to run out so when to my GP to get a new prescription. He wasn't happy with how i was taking does and instead put me on twice daily slow release tablets with oramorph as a top up.

As it happens i was due to see the oconologist for my first post treatment meeting, when i explained what GP had done he wasn't too happy and wrote to GP requesting that I be put back on oromorph only. Monday this week and back to the GP. He hadn't received the letter so showed copy sent to me. Well he was NOT a happy bunny and doesn't want to put back on oromorph only.

So I now have my oconologist and my GP totally at odds at how my medication should be fiven and in what form. Not what I need right now. I asked my GP to phone the oncologist to see if they could come to some agreement. H agreed to do this but so far i've heard nothing back.

MY QUESTION (sorry it took so long) Is what have other head and neck people been given as medication and did it differ wildly? Of course i may end up with wide ranging anwers all saying different things.


hopefully i've not confused you all and will get a couple of replies.


many thanks


ian

Hi Ian

First of all I have to say OH MY GOOD GAWD!!! I think you desperately need to change your GP. He sounds like a complete arse to me.

I went through six doses of Cisplatin and seven and a half weeks of radiotherapy. Without looking at my diary I can't give you the exact dates, but about the fifth week I went on to Oramorph (liquid, through my RIG) and stayed on it for a while. I do hope you are on something like Movicol as well or you will be more jammed up than the Tokyo rush hour!!

You are now at a potentially horrible stage of the treatment cycle and the last thing you need is your GP whining on and making life difficult. You could carry on cooking for a couple of weeks and you will need that stuff. I was lucky and wasn't too bad for the 2-3 weeks post radiotherapy. In fact, the staff marvelled at how well my skin was during the whole course of treatment.

Please don't hesitate to ask me any questions you may have, but be aware that I will be totally honest and you might not respond to treatment the same way I did...or visa versa.

All the best, and keep smiling...it freaks people out!!!

Ray

Hi Ian

Had a similar encounter with my GP last year, your oncologist has a far great insight to your needs than your GP, you will know when you don't require the extra help and then you need to reduce the amount slowly over a period of weeks.

Take care

Tony

Hi Ian
obviously everyone has different treatments/reactions to our problem. I never visited my GP as I visited my oncologist every week and he pre-empted my needs totally. He would say "by Saturday you will be needing this!"I agree with Tony- you are going to go through the messy bit now and you need all the medical and mental health help now. I remember being so happy that the trawl everyday was over and that treatment had finished but then so disapointed how c""p i was!
Change your GP he has no idea what you are going through (like most people) and find someone more sympathetic.
keep smiling!
Anne

Thank you all so much for taking the time to reply. However from your reactions it would seem i have not explained everything clearly.

MY GP was NOT suggesting reducing morphine, what he was suggesting was taking it in a different format.

I was taking appx 100mg morphine via oramorph. My GP suggested

60mg morphine via 2 (12 hourly) slow release tablets and then use oramorph on top of that to keep me at 100mg.

I could then reduce the oramorph liquid at my own pace, then when i felt i didn't need any between the tablets he would put me on a lower dose tablets (say 20 mg each) and start the top up again.

The advantage as he explained to me is that the morphine is given in a more controlled way with the added benefit that i now get some overnight so don't feel so bad in the mornings. which is true i am now much better in the mornings. Pre tablets it used to take 3-4 hours for my throat to calm down properly.


Hope that clarifies it a bit, Maybe my oncologist objected because i explained it as badly to him as i did in my first post..



Just as a side note how long did you (or your partners) need painkillers for after completing RT. I have been on morphine since finishing 11th June ans so far still need the same amount although oncologist says this should start to drop of quite quickly over the next 3-4 weeks, what has your experience been.


Once again many thanks for your time


Ian

Ian,
I finnished treatment in the December (2006) and didn't need the pain killers by March (2007).
I had high expectations for recovery and really beat myself up about taking so long to improve. But you wil get there!

I had liquid oramorph only.
I hope your doctors reconcile soon. Maybe they should have it out with eachother instead of dragging you into it!!
Honestly! As if you don't have enough to contend with!

Hi Ian,

I was on votarol (an anti inflamtary), co-codamol and oramorph (5ml every 4 hours if needed). I finished my treatment 22 May and still take all the votarol, oramorph just at bedtime and co-codamol 3 times a day (this has reduced from 4 this week as I am now only waking up once in the night!).

Shake me and I rattle - well I would if it wasn't all in liquid form lol

Love chloex

Hi Chloex,

Sounds like your very close in timescales to me, I finnished 11th june so only a couple of weeks behind you.

We are also quite close in locality (I'm berkhamsted, herts) my treatment was at Barts, is that where you went? It would be interesting to chat sometime and compare notes.


Cheers

Ian