Pain is not being dealt with...

User

Posted 30 Oct 2014 at 22:40

Hi,

I am hoping for some advice on pain relief for my dad. He was diagnosed with advanced prostate cancer in December of last year and initially had a very positive response to monthly hormone injections and his PSA dropped from over 700 to 30 at the start of the summer.

His cancer has now stopped responding to the Hormone treatment and steroids are not stopping the PSA levels from rising either. He has his first appointment with the consultant Oncologist next week but he is in a great deal of pain. It is particularly bad in one arm and the meds that he is taking (Ibuprofen/paracetamol/morphine) are not relieving it any more.

I have two questions: Firstly is it common for medical professionals to seem like no-one in particular is taking responsibilty for his pain relief and seeing him regularly? He has spoken to a mcillan nurse but his GP is absolutely useless. Secondly, will Chemotherapy help with his localised pain?

He is still working in his manual job and i think it is a form of therapy even though he is struggling.

I would be grateful for any advice as my mum is worried sick and if we can just control the pain that would really help.

Thanks.

User

Posted 31 Oct 2014 at 01:07

Hi Emma,
I am not as skilled as some others here regarding pain relief but generally, the Macmillan nurses are much better than the oncologists or GP at pain management for late stage disease. Many hospices offer pain clinic services. Get mum & dad to talk again to the Macmillan nurse; she or he will also be a huge emotional support to your mum and can give advice about work, benefits and so on.

I think it is great that dad is still working but he should be careful not to do too much and inhibit his body's ability to cope with the cancer. Depending on the type of manual work he also needs to be aware that cancerous bones are much more fragile and liable to getting broken ... has anyone checked his arm? Do you even know that he has mets in his arm? Sometimes a little radiotherapy can be given to ease pain in late disease and although chemo is a debilitating treatment, if it works then yes the pain can be reduced. I think a chat with the nurse will help you all clarify your thoughts.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 Oct 2014 at 07:42

Thanks for the advice Lyn,

Apparently when he got up to take his pain meds in the night his arm 'popped' at the joint and now feels much better! He does have metastic cancer in a lot of his bones. Should we ask for an xray to see if there is any damage to the arm or will that be done before he starts chemo or radiotherapy anyway?

The NHS seems frustratingly slow, with months between appointments and a reactive rather than proactive approach. It would make sense for any scans/xrays to be done before he sees the consultant wouldn't it??

Thank you.

User

Posted 31 Oct 2014 at 08:31

Hi Emma,

So sorry to hear about your dad.

Can i just confirm, diagnosed December 2013, i guess he had scans them. he has been on hormone therapy since.

Has he had any scans since and is he just on hormone and steroids and that's it.

Simon

Don't deny the diagnosis; try to defy the verdict

User

Posted 31 Oct 2014 at 08:47

Hi Simon,

Yes he had scans in Jan 2014 which confirmed that the cancer was in many of his large bones and spine etc but not lymph nodes. After the monthly injections stopped controlling the PSA in August he went on a daily hormone pill (sorry, don't know the name) which didn't agree with him and more importantly didn't work. Since then he takes a daily Steroid and has monthly injections.

He has had no scans since the start of the year. Maybe this will change once he is seen by the Oncologist?

Thanks.

User

Posted 31 Oct 2014 at 16:25

Hi Emma,

Ask about Denosumab or Zometa they are both bone strengtheners and do help with bone pain.

Also if you can get hold of your Dads previous blood test results have a look at his testosterone and his ALP (Alkaline phosphatase ) this is a sign of bone disease progression it can also be raised if there is a fracture or arthritis , but if he has neither then it is a good indicator to keep an eye on for progression in the bones.

I would be pushing hard to get scanned, once in 11 months is not good.

Have a look at my journey or click on my name for my profile.

http://community.prostatecanceruk.org/posts/t9698-Simon-Story-Chapter-2#post117233

My best wishes

Simon

Don't deny the diagnosis; try to defy the verdict

User

Posted 31 Oct 2014 at 19:41

Emma
as far as pain relief goes I am afraid the GP and sometimes even your Onccologist are not the best to deal with it. The Macmillan team are excellent they can aso give your Dad a lot of help about tax free benefits he is entitled to that may make it easier for him to slow down a bit at work, Lyn Eyre has mentioned this.
The pain in your Dad's arm could be caused by the hormone treatment and not just bone mets, it seems tht your Dad really needs to see the Oncolgist as soon as possible. Si has mentioned getting onto Zometa or Denusomab and I agree totally, this really helps to strengthen bones and often provides pain relief. Also use of specialised nerve pain meds such as Lyrica can also help.
Opiates can have some bad side effects when taken orally,my Husband had the best reief from intense pain when he was given transdermal patches.
If your Dad is showing signs that he is not responding to the implanted hormone treatment alone (zoladex may be the drug) then another type of daily oral hormone drug is often added something like Casodex (Bicultamide) If this does not bring the PSA and other levels like Testosterone and ALP down then the Onco might suggest Chemotherapy.
There are a lot of different treatments available for a wide range of direct and indirect issues so it might help if your Dad takes you or your Mum (or both of you) along when he has his next consult. If nothing else you will be able to recall what is said so that you can post on here to check things out if necessary.
best wishes
Mo

User

Posted 31 Oct 2014 at 22:50

Thank you all for your advice and kindness. I will push for a scan and ask about the other drugs mentioned. My mum said that when she spoke to the macmillan nurse last week about the pain and having a scan before the consultation with the Oncologist, the nurse said that they proabably wouldn't bother as his PSA is going up.

Surely though, PSA levels don't mean everything and can't show the exact progression or location of the cancer spread? I must admit that all of my family feel really let down by the NHS throughout this awful experience.

He hadn't had any blood tests except PSA done for months until the start of October, it feels like my dad has slipped through a crack and just been forgotten which is so sad at 56. It really feels like there is no sense of urgency and that the NHS is just too busy, we've had cancelled appointments and a cancelled operation when my dad was actually in his gown and ready to sign the paperwork.

It makes me feel so angry that he is treated so poorly, thank goodness we are all pulling together as a family.

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