Hi to one and all,
For so long I wished I could talk about, share and support the wonderful courageous members of the community. Thank you for allowing me to join.
I was diagnosed in August 2011 with grade 4 GBM. The shoch and horror was enormous. My wife was 9 months pregnant with our first child. The prognosis - what an Oncologist must estimate for you based on statistics, not measuring up each individual's factors as that is impossible - I was told that it's untreatable but will operate. I had surgery just one week after being diagnosed. My surgeon managed to debulk more than she originally thought possible. My child was born 10 days after surgery. My surgeon then encouraged to go ahead with radio and chemo with the stark prognosis that I should live 9 - 12 months, with treatment. We decided to throw everything at it. I had 6 weeks radiotherapy and an mri after 4 more weeks which showed the tumour was contained, no longer growing. That was a fantastic result. After a few weeks I started on Temozolomide Chemotherapy, which I'm sure you'll have come across. Each four weeks I had a 5 days course of Chemo. The original plan was to have 6 cycles and see if it works. After I completed cycle 5, the scan showed zero change since scan, post completion of radio. It was positive that it remained contained and I was coping well with the treatments. My oncologist at this point felt the chemo was having the effect of containing the tumour, but now we felt more confident to put all efforts and minds in perhaps researching a different treatment that may work better, as I was coming to my final round of chemo. My Oncologist with such kindness, trying her best to work out something, suggested we both do a little research. We sent off my scan pictures and medical report to many world renowned specialists in Oncology, from the US to Germany and the reply from every one of them was the same. That I'm getting world class treatment and it's the best there is. [We are so fortunate to have the most unbelievable NHS, I have only gratitude and pure admiration for the world class doctors and staff that make up the service] - but that's a separate topic. We then went ahead with chemo cycle 6, my last one I had left to try. We had a scan after a few weeks. My oncologist took us to her computer to show there had been a shrinkage of my tumour albeit a small amount. That was unexpected. Temozolomide was just over 5 years in use in the NHS. It was developed in Canada. There was a summit of Neuro-oncology which my oncologist was part of and present there was a professor oncologist from Canada who has been working on the Temozolomide. He was shown my case and how it dented my GBM. He was very interested in seeing this further and asked if I would want to continue with more rounds of Temo. The NHS to protocol provides 6 cycles. Therefore I was considered to be a trial, as the drug was still relatively new, and through that the NHS will fund further treatments. I went on to have another 7 cycles, each 4 weeks apart. After the total of 14 cycles my oncologist felt confident that it's stable, asleep. I've always been very aware GBM sprouts again, and that was the message I received many times. I had progressions in late 2017, noticed in its very early stage by a 3 monthly scheduled scan. I had 9 more cycles of treatment until we were happy that it was stable again.
I know I have been very fortunate. My world has changed. I feel so much empathy for all of our community people. I've told only the positives of my story. Like everyone, it is frightening sick, morbidly horrible and meltdowns. Feeling hopeless and depressed, feeling your days are very much numbered as this cruel and crass Cancer lurks to attack us. There is nothing more worrying and stressful than knowing it's not going away any time soon. Life is meager and a struggle. There are also the "side effects" caused by surgery and treatment. I have now Epilepsy, thankfully controlled, Retinopathy, Hormone Deficiency, cataracts. The list goes on and life is a struggle. I just try and feel fortunate even when my emotions are wrecked feeling unfortunate.
I've gone on for long enough. Sorry!
Very best wishes to each and every person in this wonderfully welcoming community. Thank you very much.
Rafs
