What happens now?

[RooBear]

Hello.  I am a first time poster on this forum.  My dear mum has advanced, inoperable PC which has spread to her liver and breast.  She is five months from diagnosis, bed bound, receiving hospice care at home.  Sadly, she was not a candidate for chemo following a horrible infection after the sent was fitted (resulting in a six week stay in hospital).

 

Three weeks ago I felt we were close to losing her but she was prescribed 4mg of Dexamethasone which gave her her appetite back, but not really the big boost we were all hoping for; she is sleeping 18 hours a day.  She is now receiving 2mg and by the end of this week will be on 1mg a day. She is fading, despite the steroids.  My question is, what will happen when she comes off the dexamethasone completely?  As I understand it, steroids only mask what is happening inside.  I cannot see how my mum will survive without the dexamethasone.  Does anyone have any experience of this steroid and what happens when it is stopped?  Is decline rapid at this stage when nothing more can be done?

 

So many questions, many of which I know can't be answered.  I think I'm just reaching out to people who are or have been going through similar.

 

Thank you

 

 

[Jenny.0]

Hi RooBear - have you spoken to the nurses at Pancreatic Cancer Uk?

 

Give them a call and they will guide you through it and give you sound advice (as they know their subject).

 

I hope that helps

 

Jenny

 

 

[rogs]

My late wife Margaret was prescribed Dexamethasone  on her release from hospital, after a stay to control an infection following the fitting of a stent.

That first day she said she felt better than she had done for weeks - months even.... She was bouncing around like Tigger!

Sadly, that 'bouncy' effect also continued all night as well, so she came back off the drug almost immediately.

In the longer term, we would refer to her better days as 'Tigger days'. With her pain effectively controlled, some days were definitely better than others.

So there were still some 'Tigger' days, in between the more common 'sleepy days'.

Looking back now, it was the pain control that was the most important factor, as time passed.

I do remember that Magaret had expressed her concern to the Macmillan nurse - Debbie - that she was worried about the addictive side effect of the morphine. Debbie told her not to worry.

(As an aside to me afterwards, Debbie did tell me that - in the grand scheme of things - morphine addiction was not very high up her list of long term concerns.)

In my experience, it is pain control that is the most important factor as this dreadful disease rages through the body. 

Yes, Dexamethasone can have impressive results in the short term, but it is the longer term application of pain relief - especially morphine  - that is the dominating factor as the condition progresses.

But, as most medical folk will continually remind you - "everybody's different! "

 

[RooBear]

On 8/11/2022 at 10:31 AM, rogs said:

My late wife Margaret was prescribed Dexamethasone  on her release from hospital, after a stay to control an infection following the fitting of a stent.

That first day she said she felt better than she had done for weeks - months even.... She was bouncing around like Tigger!

Sadly, that 'bouncy' effect also continued all night as well, so she came back off the drug almost immediately.

In the longer term, we would refer to her better days as 'Tigger days'. With her pain effectively controlled, some days were definitely better than others.

So there were still some 'Tigger' days, in between the more common 'sleepy days'.

Looking back now, it was the pain control that was the most important factor, as time passed.

I do remember that Magaret had expressed her concern to the Macmillan nurse - Debbie - that she was worried about the addictive side effect of the morphine. Debbie told her not to worry.

(As an aside to me afterwards, Debbie did tell me that - in the grand scheme of things - morphine addiction was not very high up her list of long term concerns.)

In my experience, it is pain control that is the most important factor as this dreadful disease rages through the body. 

Yes, Dexamethasone can have impressive results in the short term, but it is the longer term application of pain relief - especially morphine  - that is the dominating factor as the condition progresses.

But, as most medical folk will continually remind you - "everybody's different! "

 

Thank you for your time to reply

I am so sorry to hear of your experience in losing your wife, Margaret.  

We are now on to 2mg dexamethasone every other day.  The morphine has increased and I completely agree that this is the most dominating factor now.  With the reduction in steroid, there has been a reduction in appetite along with a very low mood and more confusion.  It is so painful to watch my mum going through this and I am at the point now where I wish the end would come sooner for her, rather than later.  I just don't want her to suffer any more.

 

Thank you for listening xx

[RooBear]

On 8/9/2022 at 7:03 PM, Jenny.0 said:

Hi RooBear - have you spoken to the nurses at Pancreatic Cancer Uk?

 

Give them a call and they will guide you through it and give you sound advice (as they know their subject).

 

I hope that helps

 

Jenny

 

 

Thanks Jenny xx