My lovely mum has been recently diagnosed with stage 4 brain cancer. She has had surgery to remove as much of the tumour as possible and is now having 6 weeks of radiotherapy and chemotherapy (TMZ). I can’t help but think about what’s next.. from reading some posts on here it sounds like she will take a short break from treatment and will then be offered further chemotherapy? Is anyone able to shed some light on how long this chemotherapy will run for? Or is it just a case of reviewing her scans and understanding when they will offer no further treatment? It’s such a scary thought that it will come to this!
Any experiences shared would be very helpful for me right now.. what a scary rollercoaster we are all on!
Sending love to you all x
Hi there,
Welcome to the group, I'm glad you found us. So sorry to hear about your mum. It's a lot to get your head around with the shock of it all.
It's good that she's had surgery and is obviously seen to be fit enough for the 6 weeks of radio and chemotherapy. You're right that standard protocol would then be 6 cycles of TMZ over 6 months with 5 days on and 23 days off in each cycle. This will depend on how she gets on with treatment up to that point. Generally I would say that most people tolerate TMZ fairly well though it does cause a lot of fatigue.
My wife finished the 6 cycles in April and is now in a treatment break. She has 3 monthly MRIs and when the tumour starts getting going again they'll decide whether further treatment is possible.
It sounds like you're already doing what I advise most newcomers to do which is read back through some of the threads in here to get an idea of what might come. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
Have you or your mum been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
Wishing you and your mum the best and sending a virtual hug,
Chris
My wife is very similar with the positive thinking to the point of naivety. I've learnt to just go along with it so we talk about what we'll do when she's not so muddled and her mobility is back. I think deep down she knows that's not going to happen but just can't face that grim reality. I don't think that shows any lack of courage in fact quite the opposite that she's willing to stare down any adversity as if it's nothing.
One thing I would say that we did was to sort all the practical things out when she was first diagnosed. So things like wills, powers of attorney. finances and just anything she would want to happen if she becomes very unwell or after she's gone. Once that was out of the way then I could just let her put her head back in the sand.
Chris x
Hi Justlooking
a warm welcome to the group. I'm so sorry to hear abut your mum's diagnosis. Life's too cruel.
I'm supporting my husband through his GBM journey as you've maybe read in other posts. He declined all further treatment after the initial 6 weeks of treatment in Jan 2021. It was offered again in Nov 2022 when there were signs of fresh tumour growth but again he declined. It's a decision I've had to respect.
Like your mum, G won't talk about his diagnosis very much. He says that's negative and he's not interested in negativity. That's true up to a point so perhaps it would be an idea to broach the subject of getting a power of attorney put in place sooner rather than later or get your mum's consent for the medical team to talk to you just in case a day comes when she can't make the decisions for herself. I've had many challenging experiences over the past almost 3 years because G tried to exclude me from appointments but was then unable to communicate pertinent information about medication etc afterwards due to the communication issues his tumour caused. Just a thought for the right moment...
As you've already seen this is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got you.
Chris has already covered off pretty much all I would normally say but I would add please ensure that you are taking care of yourself here too. This is a gruelling emotional rollercoaster ride and taking a little "me time" isn't selfish, it's essential to help you keep your own wee batteries charged. So go to the gym go for that walk, go for that coffee catch up with friends, sit and read your book for a while - do whatever it is that you enjoy and that supports your own wellbeing. I don't mind admitting that after almost 3 years of riding this rollercoaster I am exhausted - mentally, physically and emotionally,
For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. You're coping so much better here than you give yourself credit for. (You'll just need to trust me on that.)
love n hugs
Wee Me xxx
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