as some of you know my dad has had total laryngectomy and now his tumor is growing extensively as far as we know. he is on the following medication everyday:

- nystan
- mucodyne
- mebeverine
- lactulose
- diazepam
- MST (60/60 - he cannot up this as it makes him out of his head and we are not at a stage yet where this is appropriate as we need him with us as much as possible)
- nebs: saline, salbutamol, atrovent
- oramorph (he has about 200mg on a bad day)
- fast-tab
- one-alpha
- levothyroxine
- gaviscon
- senokot
- temazepam
- amitriptyline (he started this today because we read on here that it would help with neck/ear pain that drives dad crazy - we had to recommend this to them!!!! and they agreed)

he had lorazepam but he cannot have this anymore

at the moment he is experiencing bad shoulder pains, and we feel that the pain on the whole needs addressing. he has awful neck and ear pain and headaches and when he gets them there is nothing we can give him or that he can do to relieve it that we know of. he has 20-25mg of oramorph a time, our loros lady said he can't take more than 25mg at a time. but we think maybe he has become morphine resistant as he has been on it since october last year.

if anyone could recommend any better drugs??? he doesn't want a pump though.

we are having no contact with the hospital, all we have now is our gp and our loros lady but she is useless so we are basically on our own. we asked about a palliative care team and they said they are our palliative care team - our gp and loros lady????!!!!! mum asked the doctor to set up an appointment at loros for better drug access and the loros lady has set up the appointment for in 3 weeks time - we may not even have 3 weeks. it seems they are dragging their heels, and we are up with dad every single night because he is in so much pain.


also can anyone tell us anything about erbitux in this situation?? can it be used alone for even a little bit of prolongation - or anything?? or anyone know anything about homeopathy??

as you can tell we are desperate!! our main priority at the moment is to stop dad's pain whilst maintaining his sanity!

This message has been edited. Last edited by: hannah,

Hannah
take a deep breath and step back a moment.i will try to answer your questions and i am sure others will be here to chip in.
1)You need to contact Macmillan or Marie Curie,whoever are more appropriate for your area.
2)Ask - no demand to be referred to a pain management consultant(usually attached to your local hospice) Macmillan services have palliative care consultants who will come to the house as an emergency and start a pain management routine.
3) the information you have been given about morphine is absolute rubbish.robin was on 240mg morphine over 24 hours through a syringe driver when he was in the hospice.When he was at home he was prescribed Fentanyl patches by the oncology department at the hospital and oromorph liquid for breakthrough pain as well.He was also on all the medication your dad is on except the inhalers and the sleeping drugs.
Fentanyl is a drug that is 100 times stronger than heroin,and is delivered via a skin patch continuously, with the patch being changed every three days.The start up dose is 25 mcg and can be increase to up to 500mcg in increments in very severe cases rob got up to 300mcg before they put him on a syringe driver.If he experiences pain while using the patch he can take liquid morphine by mouth or through a peg tube,usually up to 120 mg per 24 hours.
a word of caution is that a few people cant tolerate the patch,but for most after an initial zonking effect they are excellent.

4)different types of pain respond to different medication and rob was also on Votarol and soluble paracetamol for the facial pain along with amitryptilline at night .

Dont be fobbed off hannah this is 2009 and NO ONE should be allowed to suffer pain in this day and age.
I hope you get some help soon

cancer support services


How to get a Macmillan nurse
To obtain the services of a Macmillan nurse, you must be referred by your GP, your hospital consultant, a district nurse or a hospital ward sister. Don't hesitate to ask them if there are Macmillan nurses available in your area.
Macmillan nurses are available in most areas of the country, but if there is not a Macmillan service in your local area, you can be referred to alternative specialist services. The Macmillan Cancerline, (freephone 0808 808 2020), can help you by providing information about how to get a referral for a Macmillan nurse.

Marie Curie Cancer Care www.mariecurie.org.uk

Leicester Rd
Broughton Astley, Leicester, LE9 6QF, United Kingdom
+44 1604 442311



love liz

This message has been edited. Last edited by: cookey,

How are you this morning hannah?

morning liz, thank you so much for all your help we're doing ok this morning thank you - starting to feel more angry than sad at the moment, angry at how irresponsible the people who have dealt with dad's illness seem to be, and angry at the thought that there will be more people in similar situations who will go through all these routes only to end up where we are today simply because they didn't know any different.

useless loros lady is coming today (if she turns up!), she will tell us about other drug possibilities hopefully. dad was on the fentanyl patches, we think only a very low dose like 25mcg and he had one on for a few days then he took it off and said i'm not wearing that it's rubbish it doesn't do anything etc. and i think we asked for it to be upped, but it never happened. mum says she will ask about those again. dietician was supposed to be coming but she's not coming now as she's poorly...

dad took 40mg of morphine in one go this morning accidentally (we aren't always there to make sure he's doing it right) but he's fine and it seems to have taken the edge off his pain for a bit as he's up and sorting out his ipod on the computer etc

what are the palliative care arrangements that people normally have? we are very confused about this, mum asked our gp if there was anyone who would be able to come in for 24 hours, or through the night so that we can sleep and be able to cope with dad during the day. but our gp gave mum his mobile phone number and said he might not be available sometimes but call if we needed anything? which wasn't really what mum meant...

we know dad can't have votarol, but he has lots of soluble paracetamol so we're pursuading him to start using that again for the facial pain if it will help, and he took the amitryptilline last night but we're not sure if it was effective or not yet.

i think we might have more luck getting a marie curie nurse than macmillan, we will definitely look into that, thank you

love and best wishes, hannah



edit--

our loros lady came yesterday and swapped dad's oramorph for oxynorm, he can't swap the MST because the slow release version of oxynorm is tablet form and dad can't swallow them, but she said to see how we go with this, he's starting it today.
she also said of people coming in 24 hours, we'd have to talk to the district nurse and ask her to arrange marie curie because she can't sort it out for some reason.
dad's got an appointment with the loros hospice doctor on wednesday 8th, not sure what for, loros lady said he can review how the drugs are working.

This message has been edited. Last edited by: hannah,