Brain tumours

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


Posted by

My mum has a seizure out of the blue end of may 2019 had an emergency ct where a lesion was discovered, this was referred to the neurosurgeon who looked at it and said he would take it out, the operation was delayed twice due to mums sodium levels not being stable enough! She had it in the end June 2019 he did a great job and got 90 percent but earned my dad it was large and very aversive, a biopsy was taken at the same time. Fast forward two weeks later in July 2019 the result were what we dreaded glioblastoma grade 4! Mum was told 3 months without treatment. She decided to have chemo and radiation unfortunately August her head wound became infected and she contracted sepsis it was very touch and go but she made it! September she had 6 sessions of radio over two weeks and managed to get to her fourth cycle of temodar before she was rushed back in with cellulitis of her legs! They decided it was maybe chemo causing these infections and ordered a new ct scan which showed tumor progression! The consultant decided to try her for theee months on a new chemo Called limostine she’s just finished her first cycle and seems well and one going through anything similar? Xx

Posted by

Hi , I put lomustine into the search bar above to see if anyone had the experience your looking for and I see has liked your post. I’m hoping you two will be able to support each other. 

I just popped in as you hadn’t had a reply yet (my usual group is melanoma) 

I hope your Mum continues to do well on her new drug. 

Best wishes


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Posted by

Thanks so much for your reply; I will head on over to her post and see if she would like to chat thanks ever so much x

Posted by

Same as me. Taking it a day by day. Sorting out my affairs. Cannot fault the funding of my care package.

Told only this month to live