This month will be 18 months from when I was first diagnosed with a GBM and I was given 12-18 months to live. At the moment I have no reoccurrence of the tumour and feel good. In those 18 months these are some of the things I have been through.
2 craniotomy surgeries as it came back after 12 weeks.
6 weeks of radiotherapy/chemotherapy this caused a lot of swelling( edema) on the brain.
15 cycles of increased dose of chemotherapy.
6 weeks of focal seizures, one put me in hospital as it wouldn’t shut off. my neurologist tweaked my seizure drugs. No one else could get them right.
4 falls, one put me in hospital as I smashed my head on the floor.
2 rides in an ambulance, I had never been in one before.
Im not even going to work out the blood tests or MRI scans.
Oh and I also got married to the love of my life.
Get the the most you can out of life as you never know what is around the corner.
Hello and welcome to the Community @Felix34, I hope that you get a lot of support here
Your experience is nothing short of amazing, in such a short time and a huge congratulations on marrying the love of your life
I'd love to hear more of your story!
I have a lot of support of my family and friends and are able to write on forums like this as I am comfortable discussing my situation and offer support to others.
Here is my story. I hope I don’t waffle on to much.
I am 46 years old and my whole world changed in June 2017, I decided to start riding my bike again to get a bit fitter. I knew that two days after the ride I would be sore and this was the case but 5 days later the soreness had gone out of my right leg but I was having problems walking due to weakness in my left leg. I thought I had twinged a muscle in my back.
The next morning (a Monday)I woke up by having a seizure that started in my left foot and came right up to my stomach, my partner took me to emergency even though I was saying it was just a cramp( stupid male talking). I had another seizure whilst in emergency and they had a CT scan done which showed a brain abnormality in the brain as was most likely a brain tumour.
I was immediately put into a CCU ward and on the Wednesday I had a biopsy done which came back as a GBM on the right side of my brain. The options were to leave it in and fight it with chemotherapy and radiotherapy or debulk it and then do the radio and chemo. The problem with debulking it was that my neurosurgeon believed that I could come out paralysed on my left side, I took that chance.
I came out of surgery with a deficiency on my left side but not to bad. I ended up having to stay in hospital longer as I also ended up with a DVT in my left calf muscle.
After I got out of hospital and my wound had healed I started the 6 week course of radio/ chemo, this was a very hectic time as we knew that my time was limited with the median life span of a GBM patient being around 15 months. My partner organised our wedding in 4 weeks which was remarkable and a very special day with lots of tears. I also started having focal seizures due to the radiotherapy because of this my steroids kept on being increased but did not help and I kept on having them. As I progressed through the treatment I kept on putting on weigh due to the steroids and my mobility was going and I could not even walk 10 meters with out falling, radiotherapy would wheel me in in a wheelchair.
I finished the 6 week cycle of radio/chemo but two days later I passed out briefly and fell hitting my head on a concrete floor. I was rushed to hospital and had a CT scan, it showed a lot of swelling( edema) but that was it. A week later I saw my general physician who was treating me for the DVT, she took one look at me at me and said I wasn’t right and put me back in hospital straight away. The next day a MRI showed the tumour had returned and was bigger than the first one.
This time my neurosurgeon told me I would definitely be paralysed but I took the chance again and once again I came out with about the same movement as going in. My neurosurgeon couldn’t believe it.
It took me a little bit longer to recover this time but I was still willing to fight it and wanted to start the next cycle of treatment which is no radiotherapy but an increase of the chemotherapy drug.
My general physician also organised a neurologist for me to try and sort out my focal seizures and get the balance right with the drugs.
I went and saw my chemo oncologist on leaving hospital to organise the chemo treatment and catch up with him as he had been on leave and I had been seeing one of his colleagues. He did not want me to start the treatment as believed it was a waste of time as the tumour returned so quickly. I did not like this as I wanted to keep fighting it so I got a referral to the oncologist I had when he was on leave( I have had her ever since).
Since then I have done nothing but improve.
I have not had one seizure since coming out of hospital.
I have a MRI done every 3 months,there is no sign of any reoccurrence the swelling has gone and the cavity has even shrunk.
There is now only a slight strain where the DVT is.
I have completed 15 cycles of increased chemo( just started 16th) yes I get tired and have some slight nausea but it’s not to bad.
With my movement, I can walk short distances but get tired very quickly. I also have to throw my leg out to the side slightly to walk as the brain doesn’t tell it to go straight. If it is anything more than this I use a wheelchair otherwise If I don’t I will just fall over.
I would not be where I am today with out my neurosurgeon, oncologist general physician and neurologist.
I know that one day it will come back but I will keep fighting it until the end.
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