Help on pain control

[Lem]

My Dad was diagnosed about 6 months ago and is now rapidly going downhill. The main problem is controlling the pain. He's on 120mg Morphine slow release tablets every 12 hours and topping this up with liquid morphine (oramorph?) as required. Night time is the problem though where he gets attacks of pain that reduce him to tears and leave him groaning in agony. We've had to call out paramedics to ease the pain - but if they give IV morphine, which acts almost immediately, they then have to admit him to hospital and Dad does not want to go into hospital. And from his last experience, we also don't want him in hospital either! The doctor had suggested trying steroids to ease the pain which we are collecting today.

Has anyone got any further suggestion of what has worked for you? Any advice welcomed, I just want to ensure he is not in pain anymore.

[Cathy]

Hi Lem

I'm afraid I can't give you much practical advice as this hasn't been an issue for us, however, many on here have commended MacMillan nurses saying that they have been fantastic on managing pain relief. Have you spoken to them at all?

There was also a thread on here a little while back about an operation for pain control http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=871&p=8590#p8590

http://www.surgerysymposium.org/abstracts/laws_6-09.html

Try emailing the nurses on this site as well and I'm sure others on here will offer their own advice and support.

Good luck

Cathy xx

[J_T]

Can't add anything to what Cathy has said, good advice.

Good luck.

Julia

[liz99]

Sorry to hear about your Dads pain. My husband was diagnosed 4 months ago and suffered with severe pain (now much more under control) - very much like your father, although he had in daytime night time pain was the worst. He was also on morphine and oramorph (liquid). But had side effects from this.

He was switched to oxycodone (which is a stronger tablet) and this has helped - we also insisted on a referal to mcamillan nurses - who have helped with the pain and discussing levels of tablets.

Would definitely recommend referal to macmillan.

The morphine could also be increased if this is not managing the pain - it is worth logging how often he used the oramorph on a daily basis and then increasing the baseline (morphine) by that amount each day. (in theory the breakthrough pain should be infrequent). - would discuss with doctors about this, but definately scope to increase from the 120mg twice a day (my husband is on about twice that)

My husband is also on pregabalin - nerve pain and steroids which have helped.

We have also insisted on referal to pain clinic to discuss nerve block (this would be dependant on where tumour is -but if it is around the celiax nerves then this may help - it involves injecting alcohol into the nerve which basically kills the nerve. (not suitable for all - but worth asking).

Other things we have found helpful - sitting up more (rather than lying in bed) so use of many pillows (we have bought a pillow wedge to help with this). Bending forward seems to be the most comfortable position.

Hot water bottles - sounds crazy in this weather, but has helped relieve pain slightly with my husband. He uses then both on front and back pain (has them under him when laying in bed (with towel over to ensure he does not get burned - does involve lots of reheating of bottles though. Heat patches may help - but my husband found they were not hot enough (also pretty expensive)

Is your Dad on creon (enzymes to help with digestion of food)? As sometimes pain can be linked to digesting.

Also eating little and often helped my husband - as digestion was an issue.

The doctors can do a feacal test for how efficiently the pancreas is working.

Hope this helps a little - as being in pain is awful, as indeed is seeing someone you love cry or scream in pain each night. (my husband also refused to go to hospital and would not let me phone paramedics)

[J_T]

Liz, you seem to be going through some very tough times times, Lem too. I can't offer any advice and Liz you are right on top of the pain control, though it can't be easy.

Is your husband not on any treatment? Lem too, what about your dad?

Some good tips there Liz, and I will bookmark this page for reference.

Best wishes

Julia

[Lem]

Thank you Liz, that's really useful. I'm glad that your husband managed to get the pain under some control, just hope we can do the same for Dad.

Interesting that your husband is on twice the morphine levels - is he also suffering from being "away with the fairies" and doing / saying silly things? I ask as Dad is totally "out of it" and spaced out at times and the doctors have put this down to a morphine build up in his system.

He had another dreadful night last night and was in so much pain that he's finally agreed to try the local hospice. This is good news and they've found a bed for him and got him settled today. The doctor has already assessed him and is suggesting altering his medication to get the pain under control. They seem confident they can help and that is all we can ask for at the moment. Just keeping my fingers crossed that tonight will be pain free for him

Thanks

Lem

[liz99]

Hi Lem,

My husband was 'out of it' on the morphine, talking rubbish and doing strange things, this was due to the morphine (side effects), he also had severe mood swings - again a side effect. I had a battle with the doctors about this (I am a nurse myself and so knew it was the side effects, but doctors kept saying it was the cancer, and wanted us to increase the morphine due to the fact his pain was not under control - but this would have increased his side effects). We insisted on referral to local hospice (macmillan nurses) and they switched to oxycodone (which is a stronger opiate - and he does not get the side effects (his dose is equivalent to double the morphine your dad is on) although they did not have a bed so it was done at home, which was quite scary.

I hope the hospice sort out your dads pain.

To answer Julias question - my husband (44 years old) is also on folfirinox - has just had 5th dose) we find out in a coupe of weeks if this is having any effect. The pain issues were before he was commenced on this - it took nearly 8 weeks from diagnosis for the local hospital to have a 'chair' for him to start his chemo. We are in process of reducing his pain relief - we have taken control of this ourselves (but use macmillan for advise if needed - but they are happy for us to increase/decrease as we wish (within limits).

[J_T]

Liz: I'm shocked you had to 'wait for a chair'!

Best of luck with the scan results.

Julia

[Lem]

Thanks for the help everyone.

I think (hope) the hospice have the pain relief correct now as, for the last 24 hrs, Dad has been pain free and quite awake and "with it".

He's been put on a driver which is constantly delivering meds with drugs combinations including Oxycodone, midazolam, amitriptyune and dexamethadone. I'm just so glad he is no longer in pain and I've actually had some reasonable conversations with him today which is something I feared I would never manage again last week.

Ever onwards, now we hope he will be able to go home again next week which is what we all really want.

[Jwilson]

Hi there. In our experience the pain is the worst thing and I was surprised at how many patients do no experience that terrible pain. My husband Bill is now on OxyContin 80 mg night and morning and 30 mg of oxynorm for breakthrough pain. He had his first chemo experience today, nine hours at the hospital! He was so exhausted and also very very cold, however now at 2.30 am he is not too bad. Hot water bottles or even a warm hand on his back seem to help the pain. Increasing the meds bit by bit which is done by a hospice nurse is what has worked really well. Those girls really know about pain relief and they advise the doctors. At least that is what happens here in N Ireland. The hospice nurse decides the dosage, rings the GP and he writes the script. The pain is just wild, like you we have crying and bent in two with it but for now the level Bill is on seems to be working, perhaps next week it will not work any more but for now its doing its job, thank goodness

June

[J_T]

Lem, glad to hear your dad's pain seems to be under control, what a relief for you all!

June, glad to hear Bill also seems to have found the right level of meds to suit him too.

Julia x