Fighting Rounds

 

 

 

 

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!!

 

 

 

 Round 1 – Seizures, Albie starts to let me know he is there :

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.

 

 

 

 

Round 2 – Albie shows himself as a dark matter hiding in swelling in my brain:

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)

 

 

 

Round 3 – My first strike – He’s not meant to be there, I’m getting him OUT:

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)

 

 

 

 

Round 4 – Albie fights back. He’s a Grade 4 Glioblastoma Multiforme (GBM) and needs to be attacked harder:

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