infusions or no infusions?

Hi,

For those of you who have read my previous posts you will know that my mum was dx with bone and liver secondaries at christmas. So far we’ve tried biphosphonate infusions, hormones, steroids, the lot but she started refusing treatment about a month ago after loads of complications and has really gone downhill the last three weeks.
We are now at a stage where she can barely get out of bed, has stopped eating and is drinking very little. The last meal she had was weeks ago and she is really confused and to be honest I’m worried sick.
The Hospice nurse came today and said her calcium levels are very high which explains the symptoms she has been having and that she really needs more infusions to make her more comfortable. She also said that at this stage we can’t prolong her life but it will ease the sickness and lethargy a little. Now mum being mum has said that under no circumstances will she go into a hospice or bother with any more treatment but I’m concerned that without it she will pass away shortly. I’ve expained the benefits and disadvantages and said that dad and I will support her with whatever she chooses. Have I done the right thing? Should she go back on these infusions? How long may she last in this state?
I’m seeing the onc on her behalf tommorow. Is she allowed to tell me whats going on? I’m wondering about confidentiality etc.
Sorry to be asking so many questions it’s just I’m at my wits end and desperately dont want to loose her before my 26th birthday in a couple of weeks.

Hi there, I feel for you and your Mum. Does your Mum realise how serious it is allowing the high calcium levels to continue? Whatever decision she makes treatment or no treatment I hope the onc, the docs looking after her have explained all the choices, options fully. I was diagnosed with bone mets in 2003, I had a couple of years of infusions but a few months ago I changed to bisphosphonate tablets (Bondronat) I just take one tablet in the morning. So if your Mum does decide to go back on infusions now the tablets might be an alternative later on.
Take Care, both of you, your Dad too.
x

The high calcium levels are of course caused by the refusal to have bisphosphonate infusions. Unfortunately, raised levels ultimately affect brain function. So, if remaining lucid is something that would be important to her your can use that argument.

As Belinda says, bisphosphonates can be given orally if that would be more acceptable to her? Or, another alternative if she dislikes injections, could they give her a Hickman line or Picc line via which she could receive bisphosphonates, blood transfusions or chemotherapy? They probably couldn’t even consider chemotherapy at the moment if she is not eating, as her blood test results will be affected.

Obviously don’t give her Adcal or other calcium supplements while she is refusing the bisphosphonates. Most meal replacement drinks and soups are also loaded with calcium, so it may be necessary to make your own from scratch with a blender.

Holey.

The side effects of high calcium are not pleasant at all. I’m all for taking control of my illness but certainly wouldn’t want to suffer from hallicinations etc. the high calcium will bring. As long as your Mum knows all the pro’s & cons then supporting her really is all you can do, although hard and frustrating to do. Does she have a MacN or someone she can talk to, it might be she feels such dispair she just wants to stop all treatment without realising there could be alternatives?

Love Twinkle xoxo

Whoops… so here’s the link to a page on managing hgih calcium:

cancerhelp.org.uk/help/default.asp?page=12570

Thanks for all your support - after a hellish couple of days and a rapid deteriotation she is on a morphine syringe driver. She hasnt woken in ten days but the doc says she is in no pain. Because she has refused treatment he says she is pretty much out of it - recognising voices but not actually taking in new information and that she has renal failiure. He said he would be very surprised if she survives till midweek. To be honest I’m relieved that the end is almost here and she can rest. Don’t get me wrong, at 25 I was kind of hoping I could spend more time with her and see her grow old but I’ve enjoyed what I’ve had and truly believe shes off to a better place where this hellfiring disease cannot touch her.
Dads in a state but I think we’re gonna be fine. This site has been a lifeline to me the past six months. Will update as soon as i can.

keither. x

Keither

I am so sorry for the situation you are in. I didnt know whether to post a reply or not. I feel you have done the only thing you could do - and that is support your mum’s wishes - and in the long term this will bring you comfort.

I hope you and your dad are getting all the support you need.

Wishing you and your family lots of love and support
Fiona
xx

Dear Keither,

My heart goes out to you at this moment.

Are you able to spend the final moments with your mum and be with your dad? Even if she is not aware at that time she will be comforted by your presence I am sure.

At your age you should not have to go such an experience…life is sure unfair. My daughter lives 200 miles away and at the moment is not talking to me because I told her my BC might be genetically passed to her. I was feeling pretty miserable about the situation until I read your post and now I just want to give you a big hug.

Thoughts Ruftikins