Hi all new to this forum but just looking for some advice
my dad was diagnosed with stage 4 gbm in july 2020 he had surgery chemo and radiation he has not had any treatment since 2020 as his scans every 3 months have been stable which is amazing as he was initially given only 7 months to live 3 years ago
we have noticed some changes in him hes finding it hard to walk, i think hes losing the power in his right hand he spills his tea and keeps dropping things he has gone very quite in himself he never rings anymore when he used to ring everyday just little things like that.. his last scan was supposed to be in sept this year but he still has not had it as the hospitals in Dublin are so over crowded i called the hospital to tell them of his changes they said they will try get him A scan asap … just wondering if anyone had the same symptoms as him or signs the tumor is progressing
very sad to look at him i can see he is afraid hes trying his best to be normal
thanks
maria
Welcome to the group Maria and so sorry to hear about your dad. I care for my wife who has a GBM diagnosed in June 2022. Thankfully she was able to have surgery and treatment so I guess she was "lucky" but we know that it will return sooner or later.
Below is some general information we give to everyone who's new to the forum but your dad's situation is fairly similar to my wife's. She is also post treatment and having scans every 3-4 months. Her last was in August and shows some tumour remaining but no real signs of growth yet. Since then she's had a couple of really bad bouts of headaches and confusion (her original symptoms). I've told her oncology nurse who advised just to keep managing her symptoms with steroids as needed unless it's urgent.
Her next scan is due in December but like in Dublin we know our local radiology team are struggling to keep up. I am now braced for bad news when she does have the next MRI but I've thought that before and it was still stable so who knows. She's not entirely convinced she wants 2nd line chemo if that's what's offered. I think she's hoping they'll be able to operate again and she can go back to square one but I've had to tell her that may not be possible.
Sorry that's probably not much help but you're not alone.
Sending a virtual hug,
Chris
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There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. 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.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
Have you or your dad 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.
Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.
HI Maria
I'd like to echo Chris' warm welcome to the group. So sorry to hear about your dad and the changes that you are noticing.
I'm not medically trained but my experience of GBM comes from supporting my late husband through his GBM journey. He was first diagnosed in Sept 2020 and remained stable until fresh tumour growth was detected in October 2022. Throughout his journey, I worked on the principle that if something was changing that gave me cause for concern, I would question it. Now asking those questions was frequently delayed a few weeks/months until the next routine MRI follow up with the oncologist but I always raised them. Sometimes our concerns amount to nothing and at others they result in a medication tweak and sadly sometimes there's nothing further can be done and that brings the challenge of accepting was is unfolding.
Chris mentions steroids in his reply and I note that you've not referenced your dad's medication. We found for a good number of months that introducing a low dose of steroids with G addressed some of the changes we were noting especially his speech challenges and manual dexterity. If your dad isn't currently prescribed any then that may be a question worth asking the oncologist .If you are really anxious about things, call the oncologist's secretary, explain your concerns and let the professionals decide if they need to take a look or make any changes.
As Chris has said, 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.
It’s always good to talk so please remember that you can also 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.
for now though, I'm sending you a huge virtual hug. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
