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
£700 a month is expensive enough, but some of the drugs are way more. I was looking at Erdafitinib as there were positive trials in the US, but it was coming out at $46,000 per month 
Stuart x
So, after the literally life changing events of the last week, going from a blue light ambulance into full palliative care, working with the physios OT and orthotic departments over the weekend and my husband putting handrails in at home, a Dr from the ward came to see me. She said, good news, your scan last week was clear, no sign of cord compression.
WTF !!!! Read the notes... I told her what was happening & she just said well I obviously don’t know you as well as I thought. I’ll be back to examine you later.’
You can flee up and burst before I let you anywhere near me.
Nearly lost it completely, but in the end there were only a few tears and some very bad language.
Discharge being arranged as we speak 
xx
