Brain tumours

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

glioblastoma grade 4

Posted by

apologies if this format is "wrong" - I'm not experienced in the ways of forums but if my experiences can help anyone else, that would be great.  My chemotherapy journey so far thanks to the brilliant NHS

In about June of 2017 I started getting very bad headaches that I thought were just extreme cluster migraines which I had suffered from occasionally over the years. No painkillers or migraine medication helped at all. The only thing that alleviated it at all was strong expresso coffee.


I finally went to the doctors – initially I was told to buy a book to “treat your own neck” problems.  I had a fall on the 29th august and went back to the doctors for a blood test. While waiting for the results I woke one morning and my husband noticed my left side of face was drooping.  He ‘phoned the doctor who told him to call an ambulance, suspecting a stroke.


The resulting mri showed a large right parietal tumour glioblastoma grade 4. I was sent to kings college hospital in London and given a prognosis of 3 months with no intervention – 6 to 12 months with surgery , chemo and radio I had as much of it removed as surgically  possible – debaulked -on the 13th September 2017. They were pleased with the amount they had managed to remove and extended my prognosis once chemo and radio had been completed to 18 months. They always told me that the tumour would reappear

I started my first rounds of radio 30th oct 2017 daily except for weekends until 8th Dec and chemo  Temozolomide weekly from 4th November until Jan 2018. I had quarterly mris to monitor my treatment.  All the various drugs and treatments gave me blood clots and an atrial flutter

Bisoprolol for the flutter

Lovenox injections for the clots whilst on chemo – apixaban tablets when not.


15th feb 2019– legs gave way and had a fall – another ambulance to hospital

Compact wedge fractures of t10,11 and 12


Stayed in for 5 days.  Was told the fractures would heal themselves in 2 to 3 months they did.





The mri on the29th march 2019 showed his return.


Back to London to discuss options. They gave me the choice of another operation that would probably cause more damage than good as the resurgence was too close to the ventricle and further surgery would  probably cause a leak – apparently not a good thing.- or a course of different chemo Lomustine. Started a 3 month cycle on the 4th of May 2019 – therefore back on thinning injections for the duration of the chemo. Not pleasant but necessary. I will have another mri in August to check up on the treatment.

Annoyances – all endurable

Lack of grip in both hands

Eyesight deteriation

Can’t walk unaided – wheelchair or stroller.

Posted by

Hi  and a very warm welcome to the online community

Thank you very much for providing such a detailed account of your journey so far. I'm sure others with this type of brain tumour will find it very useful.

I wondered if you were aware that there is also a group specifically for glioblastoma multiforme brain tumours which you might also like to join so that you can post this information there as well.

If you'd like to do that just click on the link I've created and then choose 'join this group' on the page that opens. You could then copy and paste your post from here into a new post there to save you typing it all out again.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

You could copy and paste what you've put here into your profile if you wanted to.

Wishing you all the best.


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

What is a Community Champion?

Posted by

thanks for pointing me in the right direction - I think I have now posted in a more appropriate area.

good luck in your journey

kind regards