Glioblastoma

Hello I live in Australia and have been reading a lot of people’s post on this sit so I thought I would share mine.

In June this year (2017) I went from being a fit 45 year old male to having Brain cancer overnight.

I had a seizure that started in my left foot and went up the left side of my body. A CT scan later that day showed a tumor on the right side of my brain. Two days later I had a biopsy which showed I had a glioblastoma stage 4 and the neurosurgeon gave me the median survival rate of 14 months.My neurosurgeon wanted to operate but believed that I would come out partially paralyzed on my left side because of where the tumor was located.

I had the removal done two days after the biopsy and the surgery was very successful with the surgeon thinking he got he majority of it. I ended up with just slight weakness and a DVT below my knee on my left side but everything else was normal and with recovery quality of life was good even walking with a limp. Just over three weeks after surgery I started the 6 week course of radiotherapy and Chemotherapy (Temolozide), once this started I started getting focal seizures in my left shoulder or left hip they would last a few minutes then go away and sometimes start up again. Four weeks into radiotherapy my movement on my left side had become so bad I had to be wheeled in to gave my treatment done. I completed the 6 weeks of radiotherapy and Chemotherapy but I had started to lose the use of my left arm as well as I could hardly walk around. I was on 16 mg of Dex at this stage as well as tablets for the seizures and DVT. My 12 week MRI wasn’t due for another couple of weeks but I had and appointment with my General Physician who was dealing with the DVT. She wasn’t happy with my condition and ordered a MRI for the next day. The MRI showed that the tumor had already come back. We decided to go with having this de bulked even with the neurosurgeon saying that I will definitely be paralyzed on my left side. Surgery was  a success again and to the surgeons amazement I did not come out paralyzed. Recovery from this surgery has been a lot slower but I have got my movement back to what it was after the first surgery so quality of life is good. My last MRI came back clear and have another mid December 

I also had a neurologist come on board and he has balanced out my seizure drugs.

I have a group of four specialists who are all on the same page with my treatment 

I am also at the stage of reducing my Dex which is down to 3mg a day

i have just finished my 3rd round of Chemo which is a double dose of Temolozide for 5 days then 23 days off, I get a bit of nausea but it’s not that bad.

I know what my fate is but I just look at the positives and will get the most out of what time I have left.

Sorry if I raved on but if anyone has any questions about my journey please don’t hesitate to ask

  • Felix i have the same condition at 43. Was a fully functioning paramedic in toronto canada. In august 2016 i began having simple partial seizures. In january 2017 i became weaker on left side and leftsided facial numbness. Mri revealed an orange sized tumor right sided. Reseection in march and chemo/radiation through april and may. Just finished my 4th round adjuvant chemo temozolomide. Lost all appetite and unable to get out if bed. Does the chemo do that to u as well? 3rd mri coming up next sat the 16 with results just before xmas. I know and feel your pain. I also have a 4 year old girl but with this 14 month survival rate i just hope she remebers me.

    I wish you the best in your battle.

    Bill