Hello folks. So sorry for another absence from the site for reasons along the same lines as I have been watching from the sidelines though and have had some good laughs and more than a few tears along the way.
I'm sorry to hear about your latest brain CT and wish you the very best of luck with your treatment. Sounds like you're in groundbreaking territory and you're the right man for the job.
I thought I was doing ok on a reduced dose of chemo, but the blood & urine tests showed an infection which spread to my kidneys. I was really suffering with sciatica and then developed weakness and loss of control of my bladder and legs and ended up being admitted for an emergency spine MRI. The 1st scan showed that the spinal cord itself wasn't being compressed, phew, but flagged up another concern and a second scan.
The second scan shows leptomeningeal carcinomatosis, meaning the cancer has spread to the lining of the brain and spinal cord. It's rare, complicated and the prognosis is 4-6 weeks without treatment, 2-6 months with. The original brain tumour and bone tumours are all growing and the cancer markers have been climbing steadily since November.
Any treatment is to preserve mobility and manage pain but is high risk.
So I'm home on high dose steroids until the MDT meeting next week to see if radiotherapy is an option.There's 1 type of chemo on offer, again if the potential benefits outweigh the risks. It's my call, if I feel I can cope with more cancer treatment they'll try Eribulin providing the steroids keep things stable during the next 2 weeks.
it was a lovely boost to read your good news, thank you for sharing that, I'm delighted for you.
I've got some catching up to do and hope to have an uneventful couple of weeks to get there! xx
Dear Tinalay,
It is lovely that your family are together in wanting as much information as possible, I hope that the home adjustments happen promptly and efficiently.
Best wishes with your initial goal, I love birthdays 
. Good luck to your brother.
Love Sal x
Sarah
