He doesn't mince words, and has theories about brain tumours that some specialists don't like, but he wins my vote every time. He points to the massive increase in brain tumour diagnoses that are happening throughout the world - the western world in particular. In the last five to eight years the rise seems to have been exponential - practically doubling every year - and especially amongst the young.
If that doesn't scare any parent into wanting more research into brain tumours then I can't imagine what will. Yet practically none is being done - not in proportion to the problem anyway.
He was talking particularly about Glioblastomas - the form of brain tumour I have. The one thing he says that strikes a chill in the heart of every brain tumour patient is this: 100% death rate. No-one escapes. Life may be extended, but no-one has ever been cured of a GBM.
To recap what I've said before, on average, here's the life expectancy once a GBM is diagnosed at Stage 4.
No treatment: 3 months.I am just about up to the two-year period. It's been hard work on me, and our family. Very hard work all round.
Life extending treatments: up to and possibly a little beyond 2 years, depending on treatment.
I think I can do a bit better than two years, but there are no guarantees. The risks posed by the treatment increase daily.
They are not static risks. Blood clots travelling to the brain or heart seem to me to present the deadliest direct risk while the tumour itself is contained.
Organ failure e.g., that of kidney and liver is also a serious consideration. They get put under enormous strain by the medications and my inability to lead as active a life as I'd wish.
The oncologists and neuro-surgeons working in this area are flat out daily treating patients. The number is endless. I simply can't imagine how they could find time to contribute their knowledge to the research, let alone keep up with it. They must be learning on the job. It's basically trial and error. But their experience is precious.
Charlie Teo says his work is essentially useless without new research. I have a considerable store of data that could be useful for researchers, but a lot of it is in my head, along with Brian, my Unwelcome Stranger. I don't know all the questions to ask of that experience, but a researcher would.
But there are no researchers coming looking. Sure, my oncologist's notes will be valuable, but there's a lot more he doesn't know. I feed him as much as I can to include with his notes, such as this. There may be something amongst these things that helps a researcher - not for me, let me add, but those who are being diagnosed daily and told what their chances are.
There are way too many young people among them; young mothers and fathers and kids.
Charlie Teo was organising a charity walk for money to increase funding for brain cancer research. He shouldn't have to! I'd rather see him in the sun, just having a break for a while. We desperately need him and others in the field to be fit and well for a very long time.
Priorities are all wrong.
Teo still puts up the theory that heavy mobile phone use, especially by young people, may be contributing to the massive increase in brain tumour diagnoses. Some recent studies have cleared mobile phone of any obvious links with brain cancer, but he points to where a great number of tumours are located - close to and just above the ear.
That's where mine is, so I don't know. I have never been a heavy cell phone user. I say the jury is still out, but take no chances.
Added Tuesday, 15 November 2011 The site for donations is
Denis, I may be being thick and it's already there and I've missed it, but could you include a link so that it's possible to contribute to that charity walk (although I agree he shouldn't have to do it). And piss off, Brian.ReplyDelete
No, you didn't miss anything (and if you're thick then God help the rest of us) as I didn't include any details and I don't recall any specifically mentioned on the programme.ReplyDelete
From what I can see, I think the walk Charlie took part in would have been last Sunday, and the information on that is here:
Walk4Life - Centennial Park, Sydney - Sunday 13 November 2011
It has a donation button. I checked and it does seem specifically for brain tumour research though the date's weird. Maybe just a typo. ("In 2010 our target is to raise $2million for the establishment of a brain tumour centre of excellence at the Lowy Cancer Research Centre at the University of New South Wales)"
Two million would be small change for one of our big mining companies!
I read two disturbing articles on cellphones and other portable gagets recently. One is that there are now more cellphones in the US than people -- and that counts both adults and children of all ages. That means that some people have more than one cellphone, obviously. This not only means a possible high risk of brain tumours, if they are part of the cause, but also, and this is the 2nd article, a horrifically high rate of deaths and injuries incurred while talking on cellphones, listening to iPods, and googling on iPads and iPhones. Perhaps Steve Jobs wasn't such a hero after all.ReplyDelete
We seem to have entered a phase of "be somewhere else now, be here later (or never)."
I just stumbled across this story whilst doing some research fro work - you might be interested in reading this - i expect you may already be away of these types of developments already....
a new compound being trialled with the hope of treating solid tumours by researchers at the Lowy Cancer Research Centre at UNSW
Yes, I thank you very much for pointing this out to me. I had not seen it before and though some may find it surprising, I don't scan as often as might be imagined for new treatments. The reason is that most new research takes a very long track before it comes to human trials; much longer than I can reasonably expect to live, so my interest in them is theoretical rather than practical.ReplyDelete
But this is different. This compound [PENAO] is having human trials right now and therefore worthy of investigating further. I intend to do so.
Thanks again, Anon. Well spotted. If you are happy to reveal your identity to me, please say so and I'll give you an email address.
Apologies for my delay in replying (and all my typos in the above message!).
I work with Prof Hogg and the Lowy Cancer Research Centre - please send your details through this page and I can (hopefully_ assist with any enquiries.
I also notice on this post you mention Lewis Cantley http://deniswright.blogspot.com.au/2010/11/thinking-about-current-cancer-research.html
He will be in Australia next year at our symposium - so hopefully will will learn of some more new advances relating to his work then. http://www.lowycancersymposium.org/
Thanks, Cristina. Things have moved on since that posting exactly a year ago. I will do as you say and I thank you for responding. Very kind of you.Delete