How long?

Hello. No question is silly, but many we cant answer and how long is one of them. Steroids will reduce the swelling and the symptoms for a while as you hVe seen. Is there a treatment plan, eg radio therapy and chemotherapy, both of which may buy time? Sorry i cant be more helpful 

Unfortunately they said that it was everywhere and they didn’t feel radiotherapy was possible and we didn’t want the chemo route. Just wondered if this slightly more lucid dad will very rapidly deteriorate as soon as the steroids no longer help. Thanks for your response! 

There's no way to say for sure, has a biopsy been done ? TMZ  (Temodar) is usally well tolerated and works best who have methylation of the MGMT gene. Most of us have had loads. It doesn't make people very sick. Steroids can save your life in the short term but they hammer the body. Hence why they want to reduce the dosage. 

They said it was too deep in the head really and he wasn’t really well enough for a biopsy. I’m in shock as literally they did a ct scan end of March and seemingly there was no abnormalities. But that’s no longer important. So just assisting with steroids- can I ask. How do steroids hammer the body? I’m concerned as GP said he can increase them again but want him to be as well as possible. Thanks. 

Hey, sending you, your dad and your family so much love and light. 

I have posted a few times on here about my dads journey, after an episode that I now know was a type of seizure in December 2023 he was subject to various scans and tests and following tumours being identified from the scans a neurosurgical biopsy to identify the type of tumour. On 28th February 2024 we were told he had a grade 4 glioblastoma. 

For him, like your dad, owing to the location of the tumours there was no possibility of debulking and they were glad to have been able to get enough tissue to perform a biopsy without any complications.  I do think we saw a significant decline in his cognition from this point onwards though. 

My dad was deemed well enough to undergo six weeks of radiotherapy during which time his steroids were increased significantly just to get him over the ‘finish line’. Unfortunately his condition had deteriorated rapidly and four days after radiotherapy ended he was admitted to hospital after a fall (he couldn’t remember falling but had broken ribs). He spent several weeks in hospital where his condition deteriorated at a horrific rate and we were repeatedly reassured by his consultant his condition would improve and this was the after effects of the radiotherapy. Added to this, he contracted covid in hospital and pneumonia as a result of the broken rib. We saw no improvement whatsoever and at times a startling rate of decline physically and cognitively.”. He was transferred from the hospital to a HCC (not sure if this is a Scottish provision only or if they exist elsewhere in the UK) however it is a facility that offers the same type of care as a hospice but patients may have been deemed to have slightly longer to live than hospice requirements and they are not deemed able to be cared for at home (-he could not walk or move himself at all by this point, was incontinent and had lost all concept of where he was). He died at the HCC on 2nd August, only 5 months after diagnosis and despite his consultant oncologist repeatedly assuring us he had 12-18 months to live from diagnosis. 

I was directed to a timeline which I found exceptionally useful, it was compiled by medical professionals working in a brain tumour hospice in the states and it charted everything I saw in my dad in terms of his decline. I’m not sure why his consultant stuck so rigidly with the 12-18 month diagnosis, I almost felt like I was being gas lit by them as they repeatedly assured me he would get better and all I saw was daily decline. 

if you think it might be helpful I could share the link with you, it is a guide but I found it helped me process the decline I saw in him and prepared me far better than I felt the oncology team did for his death 

Please feel free to message me xxx

Yes please. I just want honesty. So we have been told a rough estimate of 3 months. But feel it was a very late diagnosis especially as we’ve been told there is no likelihood of treatment helping. I’m glad they can let him die in as much peace as possible but still coming to terms with the very late diagnosis in my opinion as we’ve been “fighting” the doctors for months and months. Yes please share as prefer to know than bury my head. Your post really helps me. 

Please too accept my heartfelt condolences. My Dad is confused, numb completely on one side, slurry, angry, completely different person, possibly even now suffering from obsessive traits, but we’re concerned too he’ll have a huge fall as he falls loads. I’m so frustrated but your post helps that other people have a similar story. 

Thank you for your kind words. My heart goes out to you and your family. I can honestly say it was the most traumatic few months of all of our lives and I subsequently made several complaints to the NHS owing to their failure to care for him adequately, the things that were allowed to happen were absolutely shocking and only added to the trauma we were already enduring. I wouldn’t wish what he (and we as his next of kin) went through on my worst enemy, it was truly awful and I felt very alone throughout it all, so please if you ever need a listening ear or to just share your journey with someone who may understand some of what you are facing please reach out to me. It gives me a lot of comfort that I can try to at least be a listening ear to others who are navigating this awful disease as I don’t think I have even began to process all my dad went through and that he is gone yet

I will send you the link by private message if your settings allow, I found even the intro really helpful as it draws a firm distinction between brain tumours and other cancers-describing the brain as a master circuit and the symptoms and timeline therefore being quite unique to those that are seen in other types of cancers.

Let me know if you receive the private message okay,

xxx

I think it’s worked. I’ve pm’d you. I think

Hi thank you for your message, I’m going through similar with my Mum and would value any information that I could get. Please could I have the link you are talking about. Many thanks in advance. Axx