My mum is going through a course of chemo following a lung cancer operation at Christmas.

She was (generally) fine after the first two rounds, but after the third she got some really bad pains (muscles/joints etc). She was prescribed elephant-strength codeine but that was making her feel really sick and completely lost her appetite so she is now on Tramadol but it isn’t really working and also making her really tired.

Is there anything else we should be asking her doctor to consider? Is there anything else she can do for herself?

And she is clearly really not well – she never, ever moans but she keeps telling me how bad she is and she has just called to say she doesn’t want me to go down today to collect her and bring her to our house for her grand daughters’ 2nd birthday party this afternoon 🙁

Oromorph is what they gave my father when he had lung cancer.

I assume morphine is in no way connected to codeine and likely to give her the same sickness symptoms?

are you in touch with any cancer charities or help centres. My wife found them very very useful when her Aunt had cancer, there’s a very big support network, possible even within the clinic your mother attends. They are good sources of information about what to ask doctors etc and can be a big help

Mum is in constant contact with her MacMillan nurse (who is doing a wonderful job by all accounts).

My mum also had liquid morphine (oromorph). I’ve still got a bottle knocking round at home, i’ve never been in enough pain to justify trying it.

McMillan, are very good so should be able to help if they can.

Other than that, some of the feel good stuff like foot massages, aromatherapy helped my mum forgot about the pain for a few hours which helped her mental state

Beer and the odd spliff did wonders for me although I was not actually in pain more a sort of uncomfortable feeling.

I’m really sorry your mum is in pain 🙁

Which hospital is she attending? My mum goes to The Christie in Manchester, and has a Hotline number to a specialist nurse, who is able to advise on problems such as this.

My understanding of pain relief is “prevention is better than cure”. That is, it’s much easier to prevent pain actually starting, rather than getting rid of pain. So, after the next treatment, maybe she needs to look at when she starts taking the medication (ie don’t wait for the pain to start).

Is she private or NHS? I very good friend is an oncology consultant and she said there are some drugs that the NHS generally wont prescribe as they’re too expensive – available privately though. Tnis may not relate to pain relief though, probably sickness.
A mum and school that we know quite well had chemo for the last half of 2010 and it was tough going.

You need to be careful with going down the Private treatment/drugs route, as if can cause you not to qualify for some (or even all) NHS treatment. Which can lead to large bills (20-60K large).

sorry to hear that mf hope she kicks it head in.

Thanks for the replies everyone. She is on common or garden NHS treatment – which has been very good to be honest – she had her op at the oncology centre (teaching hospital) in Leeds and she/we were happy with how things went, speed of tests/treatment etc.

It is just this bit is proving harder work – we know mum well enough to know that she must be in lots of pain if she is telling us (I have never, ever heard her complain about pain in my life before this) but we aren’t sure the doctors are listening. I did call out of hours last weekend and got to speak to a lovely doctor on her behalf who suggested drug doses/schedules that might work but stressed that mum needn’t be in any real pain at all and that she should badger her consultant/GP for more help but we aren’t sure they are taking her pain that seriously.

Of course that is why I posted yesterday – armed with more knowledge we can ask her GP if any alternatives may be suitable and she (or my brother who is living with her at the moment) will be asking about morphine.

Just revisiting this one and SbZ may be of most help – mum has now been prescribed Oromorph (following your experience we researched it and subsequently asked her doc if they could prescribe it). She started on it yesterday but is still in quite some pain – how long does it normally take for the drugs start to work?

I really have never seen mum like this – in a matter of 6 months she has gone from being really active (regularly walking several miles every day) to hobbling around looking like a frail old thing 🙁

Would she consider cannabis? Pain and nausea relief, apetite stimulation and it won’t damage her organs like the pharma pain killers. Doesn’t have to be smoked of course.

There is also a synthetic cannabanoid called Dronabinol which can be pescribed over here but not easily.

Pain killers are not rationed on the NHS – in any way. cheaper ones are used as the first line of treatment yes but if they are not suitable then others are available.

Oramorph should kick in with hours. Just increase the dose until it does is the usual way.

There are many alternatives of many different types but specialist help not a GP may be required. Cocktails are common using 2 or three different drugs that work in different ways.

there is no way anyone needs to suffer pain although the choice may end up as sedated but pain free of in pain but awake.

MacMillan, local hospice, Pain clinics are all good sources of specialist help.

Email me off forum if I can help further

Thanks TJ – I have been doing a bit of reading too so it seems (as I understand it) they prescribe short term morphine (oromorph) as it is easier to adjust the dose because the effects start and last for hours rather than days. Assuming I am right with that, I guess it means her dose needs to be adjusted?

My brother is taking mum to the McMillan centre today to see if they can be of any more help too.

MF – that seems reasonable. It may take a few days to get the dose right. Often people end up on a long acting opiate with a short actng for breakthrough pain as well

One of the hardest things for family in this sort of situation is the helplessness. You want to help but actually there is little you can do. Don’t be afraid to express your feelings as well. They are legitimate.

Good luck

Cheers – it was doubly painful to see on Saturday – it was our girls’ 2nd birthday party. Dad died when my wife was 3 months pregnant so they never got to see him and to now see my mum shuffling around, unable to get up out of chairs, sitting quietly just makes me realise that she too could die sooner rather than later.

I will make sure my brother understands about the drugs so he can listen to what McMillan have to say…

TJ pretty much has it, they will start on a lower dose and then increase if needed. Now she’s been prescribed Oramorph the MacMillan Nurse may be able to give permission to have it increased as they’re allowed to adjust certain things IIRC. I hope you Mother recovers and is pain free soon.

Edit: Forgot Oramorph should start working in about 15 minutes and reach full effect in about 30 but overall probably no more than a couple hours of some relief.

I’ve still got a bottle knocking round at home, i’ve never been in enough pain to justify trying it.

It’s a controlled drug you need to return it to a pharmacy.

Good luck with it MF.

m_f – I share your pain.

A couple of things to add….

(1) Make sure your Mother is being honest about her pain. Pride and a sense of “not bothering anyone” can cause folk(especially the elderly) to bottle it up. If she isn’t being open about it, the dosage will never be correct.

(2) Make sure you get a proper care package in place, with enough visits from the nurses/carers as you can line up. My experience is that self-medication of morphine can get very confusing for the patient. Getting a balance between pain relief and a clear enough brain is a challenge and it’s best if someone else takes charge of it.

I assume morphine is in no way connected to codeine and likely to give her the same sickness symptoms?

Codeine is a prodrug of morphine, what that means is your liver converts codeine into morphine. People’s ability to perform this transformation varies and some can make a lot more morphine for the same dose of codeine. Hence some people may be more sensitive to high doses of codeine than others.

Hope she’s getting a little more relief.

Druid has made 2 very good points there.

Thanks Druid – she is being pretty honest about her pain (to us anyway). In fact I have never in the past known her to complain about pain but she is openly admitting to us that she is in pain – so we know it is pretty bad (see the OP). But what you say is pertinent – we have told her to tell her GP this – we are sure they aren’t quite appreciating just HOW MUCH pain she is in and I have now told her repeatedly to tell them and we think they now understand it because of the latest prescription for morphine.

Regarding the administering – fortunately our younger brother still lives with her so he is monitoring what she is doing, the drugs she is taking etc so that is pretty much under control – but she is getting help and advice from McMillan too.

i’m afraid i cannot offer any advice.just wanted to wish your mum a speedy recovery.

Thanks raceface 🙂

Declaring an interest (I am not a doctor or scientist but do work for the company) I believe Sativex is now well into phase 3 trials for cancer pain relief – a cannabis based medicant, already approved for various MS symptoms. Might be worth looking further into, but I expect it’s a long way from market.

Good luck!

Not a qualified opinion, but has she thought about accupunture… thats is if she can have it after chemo, not that I know.

Mrs FD has had it to induce labour and to relieve pelvic pain and both times it has worked very well…. and she was a sceptic doctor too !

Looks like you’ve got your answer already. But with my father it was simply a case of upping the dose until the pain went away. He was pain free and still compos mentis even though he was on some pretty high doses.

The one thing I will add, the importance of which cannot be stressed strongly enough, is that you really do need to look after yourself. Discuss your thoughts and feelings about what is going on and do not bottle them up.

My email is in my profile if you want to chat to a stranger.

Thanks for the offer SbZ

Funny how this place works – two of the people I have had several confrontations with on here offering real help and advice.

That’s what I like about this place.

😀