Leptomeningeal cancer

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Hi,

I was diagnosed with brain metastasis and widespread bony mets throughout my spine, ribs, pelvis & leg 3 years ago.

I also have a new liver tumour & lung mets.

I had an emergency admission to hospital last week with neurological symptoms & the scan shows spread to my spinal cord.

Apparently it’s a rare complication & I’d be grateful to know if anyone has experience of this.

I’d also be grateful to hear about experiences with radiotherapy to the spinal cord.

many thanks.

rosehamp over 3 years ago

Tinalay it sounds like you are a fighter and l am so sorry for what you have faced over the last few years. I have been fighting for 7 years and in that time have faced 4 operations and two bouts of radiation to my spine and pancreas. My Cancer is incurable and it’s only a trial drug which is keeping my 7 mets at bay. What would you like to know about spinal cord radiation treatment. Sending love your way

Rah

Tinalay over 3 years ago in reply to rosehamp

Thanks for getting back to me rosehamp

I had gamma knife surgery to the brain & skull mets which worked well with manageable side effects but have heard various horror stories about spinal cord radiation. Pain & worsening neurological deficits are the big ones, potentially irreversible and life changing.

I hope your trial drug will continue to deliver, how are you generally? 7 years is a long time and 4 operations a lot to handle. I feel very lucky so far.

I’m aiming for my 64th birthday in November xx

Tinalay

Every bad situation is a blues song waiting to happen.

Amy Winehouse.

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Leptomeningeal cancer