Hi, I’m new here. My husband is 43 and was diagnosed stage 4 in December 2018. He had the main tumour removed and has been on chemo most of the time over the years. He’s been on Folfuri for 18 months with no break and doing really well. All tumours in his liver, lungs and stomach lining have been either stable or shrunk. Anyway, he had a fall or fit on Monday and when I found him, he wasn’t able to talk. He had dislocated his jaw and didn’t know what was happening. They did a brain scan and found a mass that they thought may be blood. They did an MRI with contrast yesterday and we were told today that the cancer has spread to his brain and there is blood around it. Has anyone got any experience with this? It’s so rare that I can’t find anything, we have 2 children and I’m so scared. He is being a trooper as usual and just plodding along. Sorry for the long post.
Hi Mumof2girls
I am so sorry to hear this . What a fright for you both .
In what feels like a previous life I used to be an occupational therapist and have a little experience with seizures.
Although rare we have had people on the forum with brain mets . Like any other spread location and size predicts outcome . But we have had people use surgery , whole brain radiotherapy or cyber knife or other types of targeted radiotherapy to tackle the spread .
Although brain surgery sounds very frightening they have actually recovered very quickly .
I can totally understand this is a very frightening time for you as you support your husband and meet the needs of your children . Please feel free to contact me via pm if you ever need to off load . We are here for you both .
Please also contact our helpline to see if there is any local support for you if you need that .
Take special care ,
Court
Helpline Number 0808 808 0000
Hi, thank you for the message. It feels like we’re always in the unknown and waiting for a glimmer of hope. My youngest is really struggling. She’s smart and has bay ears so even though we try to shield her, she’s very aware. I’m just hoping that they let him carry on with the palliative chemo because other than this, it’s been great for the original tumours it was prescribed for.
Helpline Number 0808 808 0000
we have to go to Walton on Thursday to see if her qualifies for direct radiotherapy. Fingers crossed because that’s his best option.
Oh that’s a big step forward . So pleased to hear that . Holding out for a good result .
Court x
Helpline Number 0808 808 0000
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