Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

What does Patient management mean - what should I expect

EO83
Posted by

HI, 

my sister has brain cancer - grade 4 transformed tumour. To date the chemo and radiotherapy hasn't worked. Two months ago, they changed her chemo to something more aggressive. Next week she has a MRI, results to be delivered 26th June - if the "new" chemo is shown to be working they will continue with treatment for another 4 cycles. If its not working  - its "patient management." what does this mean?

My sister is 36 years old, diagnosed in April 2017 following series of unexplained seizures. Two brain surgeries later, lots of treatment, OT, physio and epilepsy care intervention. Her life has changed significantly, complete 360 - but right now considering her circumstances she is doing brilliantly. Living independently with the support of a home care package  - she has capacity, doing the things she can, and working on the rest. I feel good that she is doing so well, but confused as I don't know what to do expect. 

Part of me thinks it doesn't matter what the chemo is or isn't doing, because compared to six months ago she's in a better place. Her mood is better, her motivation love of life returning. No more manic episodes. Whereas I'm not naive, I'm under no illusion my sister is "getting better" and "she's on the mend"  - she's just in a better place than she was. her quality of life 100% elevated  then it was when she was in hospital.   what does this term patient management mean? Will my sister just one day be as she s today then one day not. Will she just endure a long period of deterioration to her health. Will there be a prolonged unnecessary period of suffering. days, weeks of her being bed bound. I'm confident I know her wishes, I just don't know what to expect, not because I just want to make things right for her be her filter so she doesn't have to endure unnecessary pain, suffering and upset. I want I guess know what to do. ny advice, tips gratefully received

 Thanks for listening.  :-) 

latchbrook
Posted by

Hi  and welcome to the online community although I'm sorry that you've had to find us.

It's natural that you want to know as much as possible about your sister's treatment and what will happen next if the chemotherapy doesn't work. As I didn't have the type of cancer your sister has I can't answer your questions from personal experience but I noticed that your post had gone unanswered. It might be that no one here has had the same experience as your sister or simply that they haven't seen your post yet. By replying it will bump the post back to the top of the page where it'll be seen again.

I have searched the Macmillan website for the terms "patient management" without success and wondered if you meant pain management? If not then you could post your question in ask a nurse and one of the specialist cancer nurses will aim to reply within 2 working days.

You said that you wanted to understand what will happen at the end of life so you might find this information from Macmillan helpful. 

I do hope that the chemotherapy has the desired effect.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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EO83
Posted by

HI, 

Thanks for the reply, since posting my message I've had time to reflect. I've also read through old posts about the topic, another name for patient management I believe is end of life care. I'm going to email the online nurse team. 

Thanks all the same. :-)