morphine based drugs

I need help!!!
I have mets in my lymph nodes chest and lungs - the one in my lymph nodes in my neck is sitting on a nerve and I have been given mst 50mg and oramorph as and when needed upto 4 times a day, i also take paracetamol and ibruprofen.
Does anyone have any good ideas into keeping me awake.
I know I need to take the mst and oramorph cos of where it is sitting on the nerve and I couldnt manage without it but I can’t sit down for very long without falling asleep.
I sorry if it sounds like i am complaining about being given painkillers but surely I can stay awake as well
Thx
take care
Lisa xx

How long have you been on MST for? I’ve been on it since may now and doesn’t make me sleepy now. My palliative care team say to me if you need oromorph 3 - 4 times a day then the MST needs to be increased. The oromorph makes me sleepy so I think you need to go back to your team and ask for a review of your painkillers.
I get a lot of nerve pain so take amytyptylline aand clonazepam at night which helps me sleep at night but not as sleepy in day. As you are getting nerve pain I would ask about these drugs or garbepentin which is a good drug for nerve pain.
Just having cancer can make you tired though - downside of the illness.
You are not complaining - it’s miserable being tired and falling asleep when you sit down. I know that feeling well.
Please get back in touch with your team as it sounds as if thye haven’t got it right for you and the idea is that you shouldn’t be in pain but can have energy to enjoy your life.
Thinking of you
Kate

Hi Lisa,

Is the 50mg mst once or twice a day? A few months back I needed to be on MST & oromorph for pain and was taking 10mg 2x a day with the odd top up of oromorph so some days I was taking in total the equivalent of 30mg a day and that was as much as i could cope with. Are you needing to top up with oromorph very often? My mac nurse suggested took more MST but I preferred to do the equivalent with topping up so that I could come down easier if I didnt need so much. That was my first experience with morphine and I really don’t like the way it leaves you. It made me very feel very sick and sometimes I was sick with it. It is so hard finding the balance between controlling pain and feeling ‘normal’. My onc has been waving the mst under my nose again but have said no thankyou! So at the moment I am managing pain with diclofenac and amitriptyline but even that means I am sleeping a lot more - but at least it is at night.

dawn
xxx

Well I am on oxycontin, paracetamol, gaberpentin and goodness knows what else - I sometimes think it is possible to fall asleep whilst walking. I hardly get any pain escept when I try to reduce and then it can be jolly painful. What is the MST you refer to.

Hi thx for all the help
Mst is a tablet form of morphine I believe. I have to take 50mg mst twice a day I am at the moment managaing on oramorph as a top up twice a day.
I will see my team and ask about these nerve tablets you are mentioning thank u.
I sometime wonder how we manage to stay so positive with so much goin on in our bodies and with tryin to come to terms with the enevitable endin we are to get.
If all us women on here could just make the one wish for it to go would you u think there was enough of us to wish the disease away?
well I am now off for my first carboplatin and hopin it is gonna work so fingers crossed and speak to u lovely ladies again soon
Take care
Big hugs
Lisa xx

Hi Lisa
I am not sure what mst is? I am taking Oramorph - 10mg/5ml, one 5ml spoonful each evening. My onc. suggested taking it only at night, which is when bone pain at it’s worst. Diagnosed with mets to sternum last June, then mets to ribs last week. So I have only been taking oromorph for a week. It does make me very sleepy but as Kate said, having cancer doesn’t help fatigue levels. By day I take Tramadol - as little as I can get away with. Two 50 mg capsules when I get up and another two about 4pm. This keeps pain muted to the level of an ache. The tramadol does not make me sleepy, just a little spaced out!
Maybe, Lisa, you could try this combination although you may have done so already… Let me know what mst is?
Thanks
Ena x

MST is morphine sulphate and a slow release morphine tablet. I found tramadol made me nauseous but don’t get nausea on mst…do get constipation though.

I am tired a lot of the time but think thats chemotherapy plus cancer rather than the morphine. I take morphine for shoulder pain from neck tumours.

Jane

Tramadol is a morphine like drug and some people get on well with it and others don’t. The MST as Jane said is like oromorph but is in a tablet/capsule form and slowly releases over 12 hours so the idea is, as far as I understand it, is that the MST should cover the usual pain and then you only should need the oromorph for top ups. My team are not happy if I’m taking oromorph 3 - 4 times a day on a regular basis and would rather I upped the MST if the pain is long term. They all vary in their approach. I would really go back to your team and ask about specific nerve pain tablets. Sleepiness is difficult to manage and very frustrating to try to live your life in normal.
Hope the carboplatin works ffor you
Love Kate

My wife has Duoralgesic patches which we change every two days, they vary between 25mg and 100mg patches. My wife is on 2 X 75mg = 150mg at a time. They are very convienient and cause little side effects. Can you not get these in the UK ?

They can be added to at any time so if you needed it you could have three or four 100mg patches on. They are also waterproof for showers or swimming etc.

Terry

Hi,

I also am on Duragesic patches which release fentanyl into your body over a 72 hour period so I change mine every three days. You can start with as little as 12.5mg then they go up and up and up. Mine have been increased/descreased/increased again and the dose I am on is working for me at the moment. I also have Actiq lollipops which are a quick hit of fentanyl when in pain while out and they have been an absolute lifeline in helping me get back on my feet and out and about again. There have been times when I have thought I would never go out independently again I have been in so much pain but I seem to have found a pain regime that works for me. However, the downside is fatigue but, as Jane said, having had chemo, it becomes difficult to differentiate what to attribute the fatigue to but I have found all morphine/fentanyl based medication do make me extremely tired. I could do with increasing my dose of the patch but the pay off is increased tiredness so am seeing how I go for the next couple of weeks. I keep a couple of the lower patches in then I can always pop one on to up the cover.

I have found oxycodone & oramorph the worst in terms of fatigue and nausea but found that over time these symptoms diminished.

So my little regime, with slow release voltarol, paracetamol and knowing oxynorm and actiq lollipops are in my bag works for me at the mo.

As Kate says, oncology teams vary in their approach but it is worth cracking on and finding something that works for you and gives you pain relief and also enables you to have a life too. The two are not mutually exclusive although a lot of patients seem to feel they have to take the meds and not complain. I am not one of those …

Hope your first carboplatin went smoothly.

Take care,

Angee x

Zena
I’d support the idea of exploring pain killers more directly aimed for nerve pain, there are a fairly big range, many are primary designed for other use but have a “side effect” of reducing nerve pain i.e amytripyline is an antidepressant but also works well for some nerve pain. ( Dippy Kate doesn’t sound that dippy!)
MST should be taken 12 hourly for best effect, let your team know what you need daily in the way or oramorph so they can titrate your MST accordingly.
Also I hope they have warned you that Oramorph and MST are both constipating! ask about Movicol or Senna/milpar combination or hippy herby option you can buy Ortisan fruit cubes from chemist/health food shops (start with 1/4 cube as some people find it strong!)
HOpe you get it sorted soon

Gill x ( nurse not working at present!)

hi Ladies

Thank you again for the great response.
I have had my first carboplatin and it went smoothly ( i think)
I am going to contact my mac nurse tomorrow about the nerve paink killers and see if I can get something to relate to the nerve pain instead of general pain.
I did have a course of movicol - 8 satchets in 6 hrs for 3 days before going after 14 days of constipation ( ouch )
I don’t know if anyone of you ladies has had carboplatin but if you have did you suffer hot sweats after having it as I seem to be dripping !!! ( lovely )
I also suffer a lot of temp around 37.6 - 38.4 on any day including days after chemo and normal days including low imune and not

Big hugs to you all
Lisa xx

Hi Lisa,
After reading all these posts, I think I must have the constitution of a carthorse!! Although, I don’t have bone secondaries, I have had horrendous year, with spine collapsing in various places- for which I blame my chemo regime- and nothing, but nothing eased the pain! I tried MST and oramorph, Tramadol, and did get some relief on Fentanyl patches, but as I used them for long period (nearly a year) I ended up becoming allergic to them, and they itched me to death, so I hadd to stop them. I never had any problems with morphine-based problems, except if I take Oramorph too often, but the foul taste stops me doing that! Had various ops etc, and now trying to cope with just cocodamol and gabapentin, which seemed to be better for the nerve side of the pain, but I am now trying mind over matter, as my poor liver is not enjoying life! I hope that you get some comfort from pain. I also sympathise with sweats, which I have suffered greatly with since chemo. Even in this cold recent snap, I still have to strip off frequently!
Best wishes
Jax

Lisa,

You are in my thoughts and i pray the new chemo is working for you. no news for me yet but will keep you posted.

take care hon.

sukes
XX

Hi ladies

I have seen my mac nurse today and she has upped my mst to 60 mg and told me I am able to take my oramorph upto 3 times before she will increase my mst again.
She was a bit reluctant to give me nerve pain killers so increased my mst instead
Thank you for all the advice and I will try the new regime of pills to see if they work if not I will go for these nerve pills
Take care
Big hugs
Lisa xx