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??
Original Post
Posted 25 June 2009 09:53 PM Hide Post
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

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