This is the timeline of what’s been happening since 2015, from diagnosis, through treatment, to where I am now. It can be used as an index for the blog posts, which hopefully I have now written and caught up on. I apologise there are a few gaps in things as I didn’t know I was going to do this and didn’t record everything. I blame Albie, he affects my memory!!
30/12/14 – 30 second blackout daytime seizure (the start of it all)
03/01/15 – Daytime partial seizure (deja vu effects for a period of secs)
08/01/15 (approx.) – Daytime partial seizure (deja vu effects for a period of secs)
13/01/15 – Daytime partial seizure (deja vu effects for a period of secs). No further seizures of any kind.
01/02/15 – Initial MRI, identified dark matter in brain and admitted to Hospital, referred to regional specialist to review scan
Identified that the seizures / headaches were caused by pressure to the brain from swelling around the dark matter.
04/02/15 – Discharged from Hospital prescribed Levetiracetam (Keppra – 500mg), Dexamethasone (4mg), omeprazole (20mg)
09/02/15 – MRI prior to surgery
11/02/15 – Admitted to Hospital surgery
12/02/15 – Surgical resection of tumour (right temporal region), identified as Grade 4 Glioblastoma Mulitforme
16/02/15 – Discharged from hospital prescribed Levetiracetam (Keppra – 500mg), Dexamethasone (2mg only for 2 days), omeprazole (20mg only whilst taking Dex)
17/03/15 – Commenced concomitant chemoradiotherapy
13/05/15 – Concluded concomitant chemoradiotherapy
June 2015 – Commenced adjuvant Temozolomide chemotherapy, one week (5 days) of oral tablets in every 4 weeks concluded November 2015
26/08/15 – Mid chemotherapy MRI Scan
28/08/15 – Results of MRI 26/08/15. Complete response, there is no evidence of recurrent or residual tumour.
Round 5 – Just coasting, laying low and recovering gaining strength back:
After the great news from the August scan it was decided I could move into a monitoring phase. This consisted of 3 monthly MRI scans – all showed no change UNTIL………
Round 6 – Unfortunately we were both regaining strength, Albie fights back and announces a Recurrence:
July 2017, following a routine MRI scan, a change in cells was detected (classed as tumour recurrence), so back on chemo
Round 7 – I’m not ready to give up and again fight back against Albie:
July 2017 – Commenced adjuvant Temozolomide chemotherapy, one week (5 days) of oral tablets in every 4 weeks concluded January 2018
November 2017 – Mid Chemo MRI Scan, tumour shows no sign of growth but no signs of shrinking
06/02/18 – Post Chemo MRI Scan, good response, there is no evidence of recurrent or residual tumour (SAY WHAT??? Not what I was expecting but so good to hear!!). Back to 3 monthly MRI scans
Round 8 – Two against one:
11/05/18 – Routine 3 monthly MRI Scan
21/05/18– Results of MRI 11/05/18, the rollercoaster continues, Albie is back…. This time as 2 very small tumours – The fight is ON!! Talk of going back on Chemotherapy in August but this time PCV rather than TMZ.
June 18 – In preparation for August Chemo try to round up work, destress and get my body chemo fit to give me the best fighting chance.
July 18 – Month off to enjoy life before starting chemo, went on holiday to Spain and Budapest.
31/07/18 – Returned home from Budapest but unfortunately was showing some tumour related symptoms
01/08/18 – Taken to local A&E, checked over including MRI and CT scans and admitted to the ward. Tumour showing signs of growth and swelling, put on a strong dose of Dex steroid
02/08/18 – Dex appeared to be doing its thing and controlled the symptoms so discharged from local hospital.
06/08/18 – Oncology appointment to discuss the results of the A&E MRI scan. Scan showed significant tumour growth, new plan is to commence TMZ chemo for 6 months.
15/08/18 – Start of new chemotherapy TMZ 6 month treatment.
29/10/18 – Mid chemotherapy TMZ treatment MRI scan, tumour shows no sign of growth but no signs of shrinking. This is considered positive as it’s stable but still a concern as how large Albie currently is.
21/01/19 – End of chemotherapy TMZ MRI scan. Albie shows significant growth, now described as an enormous tumour with limited treatment options.
28/01/19 – Start of PCV chemotherapy, 6 cycles of 10 days treatment followed by 32 days rest