This makes more sense if Joan's comment is read first.
The new research on brain tumours and treatments is wonderful in that it is concentrating on new approaches. They are an attempt at lateral thinking, if you like, which all scientists need to try. That thinking can become mainstream when its effectiveness is proven.
The one you've directed attention to is based on work by the same man (and team) as there are references to this approach elsewhere -
This is quite a good one.
It's generous of these researchers to write up their work in manuscript form like this and get the information out there. Doing this shows that the goal - to prolong good quality life for patients - is more important than the researchers' personal ambitions.
This research still has a long lead time, even when the experiments on animals seem fairly conclusive. Trials on humans still have to be held. Those who have nothing to lose would obviously be the first human subjects. By that I mean those who have exhausted all other means, are still determined to fight on and are healthy enough to be part of a research program, and are not only looking down the barrel but see the gun is cocked and the finger's on the trigger.
These tests take time, and if successful, still have to be approved by the appropriate regulatory authority, which also takes time. If successful, the drugs need preparation. If they are to be distributed in another country such as Australia, then there's an approval process there.
It's probable that a GBM brain tumour patient will die before that stage is reached.
I'm not being gloomy here, just realistic. When something like Avastin, which I am sure is keeping me alive, is demonstrably effective in prolonging good quality of life, and it still is not on the Australian Government's subsidised list for brain tumours, then ignorance and perhaps apathy at the top also adds to the waiting time. And expense for unsubsidised drugs can put them far out of reach of most.
It's obvious that even the best of treatments take several years to develop and the benefits to flow, except for those who were on the clinical trials and might be lucky enough not to get the placebo and end up with a positive result.
The other important side of it in my case is that I'm not at the nothing-to-lose stage that I was at a year or so ago, when I opted to try just one dose of Avastin. That one dose that has now stretched to eighteen, I think. (At full cost per dose, that would be A$104,400!)
I have reasonable stability in most respects still. Though focal seizures are unpleasant and at times debilitating and painful, they are far from my chief concern, unless they either increase in duration and/or intensity and/or the extent of affected areas. At the current rate of only one or maybe two per month, they are not the issue. They only signify the fundamental problem, and that is that an increase in any or all of the above would show that the tumour is becoming less and less controllable.
That would be the real concern.
If I opted presently for a new/additional treatment for seizures, there is a chance it may interfere with the working of Avastin and other stabilising drugs for seizures in the armoury.
This is far from an idle threat. To give you an example, turmeric is a natural remedy that has a reputation for positive results with many cancers. Generally I include all natural inhibitors in my diet, but there is a clear warning on the label with Avastin that tumeric acts negatively when Avastin is used. I wouldn't have expected that.
With new drugs, the only approach is trial-and-error (success rather than error, we hope!) for individual patients. This can be very frustrating, as we may reject trying something new that would be positive for fear of upsetting the balance between the current cocktail of stabilising drugs and the Avastin. We need a clone to try these things out on!
The butterfly in Bejing is very much part of the equation - or to be more accurate, of the upsetting of its state of comparative equilibrium. But the beneficiaries of current experimental treatments will be those using them several years down the track.
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ReplyDeleteIt is actually the opposite. It would be a great relief if the seizures were directly the result of something we were doing or not doing. Then we would feel that we were in a position of greater control over them. As it is, knowing they are a by product of tumour activity ie a growing, productive, getting bigger Brian, is extremely depressing and makes them harder to cope with my point of view.
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