Hi Bossbabeling, Sorry to here what you are going through I am 18 months from first being diagnosed with a GBM brain cancer, if you have any questions about my experience please ask, I have posted a few blogs and posts as well. Take care  Colin ... View more

Hello Kate, 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.   Colin   ... View more

Hi Pina, No problems with sharing my story and if you ever have any questions don’t hesitate to ask. One of the hardest periods I went through was the radiotherapy/chemotherapy as it caused a lot of edema (swelling) on the brain. This caused me to have focal seizures( body twitching). They kept on putting my steroid up to try and control the seizures, the steroids got up to 16 mg as the oncologist didn’t know what drugs to put me on. Once I got a neurologist on board he fixed this problem. At the end of the treatment I had a fall at home and ended up back in hospital, a MRI was performed and it showed the tumour had already returned after 12 weeks. My suggestion is you can never ask to many questions and if you notice a  change with your mum in mobility, speech,  mood swings or even just the way she is normally I would get it checked out. With the diet side  know it’s not going to cure my GBM but if it gives me more time I will take it. I didn’t change anything until about 9 months ago, my platelets dropped down to 108 ( my chemo oncologist doesn’t want them below 100) so I started eating foods high in omega3 fatty acids and leafy greens such as salmon, tuna, avocado and spinach. My platelets then went up into the 140’s for 6 months but have dropped back down to 111last blood count. My bloods 2 months ago came back with a very low white blood cell count( first time these had dropped ) so I started having a diet high in vitamin C, this consisted of broccoli, brussel sprouts, kiwi fruit and papaya. My white blood cell rose the next cycle.   Everyone is different, they will tolerate the disease differently, the side effects differently, My side effects are tolerable with slight nausea and tiredness, but I don’t look forward to it.   like I said any questions please ask. take care Colin   ... View more

Hi Nick, I am 46 and am also diagnosed with a GBM4 this happened June 2017. I have had two debulkings done experienced 6 weeks of chemotherapy/radiotherapy  gone through a lot off other stuff on the way and now I’m just about to start my 16th cycle of increased chemotherapy. I like reading other people’s stories and have no issue discussing my own so I will check out your blogs.   Take care Colin ... View more

Hello Matt, Sorry to read about your mother in law I am 46 and was diagnosed with a GBM June 2017 after having difficulties with my left side and then having a seizure. After the biopsy came back that it was a GBM I decided to have it debulked even though there was a high chance I would be paralysed on my left side. This was done 5 days after my seizure and I came out with a slight deficit, I could still walk but was with a limp and my arm was weaker.  Once my wound healed from the craniotomy I started radiotherapy/chemotherapy, this took a lot out of me I was having focal seizures so they kept on putting my steroids up. By the end of radiotherapy I could hardly walk and they would actually meet me at the door and wheel me in. I finished my radiotherapy course of 6 weeks and went to an appointment with my general physician, she took one look at me and said I wasn’t right and put me in for a MRI the next day. At this point I was still having focal seizures and my eye sight was getting blurry. The MRI showed the tumour had returned already in the same spot and was bigger, this was only 12 weeks after the first removal. I had it removed again even though I was told I would definitely be paralysed but I came out the same as before. My general physician also put me on to a neurologist who was able to get my focal seizures under control. When I came out of hospital I went to my chemo oncologist as I wanted to start the next stage of treatment which is to increase the dose of chemotherapy. He didn’t want to as it had come back so quickly. I changed back to an oncologist who I had when he was on leave.She listened to what I wanted and I started treatment once my wound had healed. I have now done 15 cycles of this treatment, my body is tolerating it ok I do get tired and have a bit of nausea but it’s not to bad. My white blood cell count did drop last blood test but I was still able to take the chemo. I have gone through a lot over the last 18 months and there is a lot I haven’t touched on as it will take all day to read. If you have any questions please don’t hesitate to ask I know what my fate is and I am able to discuss it openly. Some people can’t understand it but my theory is it’s no ones fault  I will be positive and get the most out of what time I have left.   Take care Colin   ... View more

Hello Haley, I am 46 and was diagnosed with a GBM brain tumour June of 2017 after having a seizure out of the blue. I was rushed to hospital and by the end of the week it had been debulked . The doctors gave me 18 months to live and I came out of surgery partially paralysed. I started radiotherapy/chemotherapy at the end of the 6 week course of radiotherapy I could hardly walk. I then had a fall, had a MRI done and the tumour had already returned. I had it debulked again even though my neurosurgeon said I would be definitely paralysed. I came out with the same movement as before. Coming out of hospital late September 2017 I went straight to my chemo oncologist(who had just come back from leave) as I wanted to start the next cycle of chemotherapy which was double the dose I was on when doing radiotherapy. He told me it was useless as it had come back so quickly. I Changed oncologist and she listened to what I wanted to do and I started the chemo once my wound had healed. I have now done 15 cycles of chemo and even though my white blood cell count dropped last cycle I am still travelling well, yes I get tired but it’s not that bad. My neurosurgeon can’t believe how well I am doing, there has been no sign of a return of the tumour and the cavity has even shrunk. He did tell me not to read anything about it as I won’t like what I read. Everyone is different but I have no problem reading about it or taking about it. I read up about what foods are good for my platelets and my white blood cells and then put them into my diet. Don’t know if they do any good but at one stage my platelets got low changed my diet and they went up and stayed up for 6 months. Sorry if I have rambled on but I have been through a lot over the last 18 months and there is a lot more that I haven’t touched on. If you have any questions about what I have experienced please ask I am willing to talk about it.   Be strong and take care Colin       ... View more