I am publicising only two very recent papers on new brain tumour trials and therapies, but I do it with important qualifications and differing reasons.
It's interesting that the first has taken so long, not only to have this trial done but to get it into the public arena. The fact is that it takes time and money to get to this point. If it's to be done properly, with intelligence, planning and post-number-crunching, then a good case must be made for investing in all of this.
Even more confusing is the conflicting evidence, and I'm living proof of it. The story on the first says that Avastin offers only 'extra weeks' on average for GBM victims.* In my case, a person in his 60s, Avastin has given me an extra two years or more so far, although it is clear that I am at the stage where the 'cure' becomes the 'poison'.
It's done its job. I can't ask for more, but the fact that it's an unbreakable pact between Avastin and me may explain in part why I did not opt for it months before I did – a question I've been asked several times. There are other reasons as well, but I won't go into them further here.
My point is that this report can have a negative impact on decisions by Governments to extend PBS subsidy to drugs like Avastin, if those who decide these matters think 4.5 months is not worth the $20,000+ expense. This means many may miss out on significant reasonable quality of life extension simply because they can't afford tens of thousands of dollars to see if it's useful for them. The benefit as in my case, is measured in years, not months. This could well be the case for others, like young parents.
In the first case, Avastin is in use in Australia, obviously, or I wouldn't be here now. In the second piece of research, it is likely that because it is only in the trials stages in the US, it won't be of any benefit to those in Australia who have brain tumours now. This is not to say that it has no long-term value, of course, but often hopes are raised, only to be dashed.
I have taken chunks from these articles but you should read the originals at the sites indicated, as they say important things I leave out. I offer them to you to help move debate along as to new therapies and how they might work. As I said, please read the full article if you want a real understanding of its substance.
The first is a British study, the second American. Three dots [...] indicates where parts of the original article have been omitted. My sincere thanks to all involved.
Drug offers brain cancer victims extra weeks of normal life
By Victoria Fletcher
Patients with incurable brain tumours could be given new hope thanks to a drug currently used on bowel cancer, a study suggests.
Glioblastoma multiforme (GBM) kills more people under 40 than any other cancer... the most common and most dangerous of brain tumours.
Unlike other cancers, which are more likely to strike as patients get older, GBM is just as prevalent in patients who are young and healthy.
Unfortunately, the average sufferer will only survive for 14 months after diagnosis... and 2,500 die from their tumours annually.
However, a new trial published yesterday shows patients can be given an extra four-and-a-half months without their condition worsening** if they also receive the drug Avastin.
The trial on 911 men and women suggests Avastin can slow the growth of the tumour, giving patients a few more months of relatively normal life before the tumour grows so big that it starts to destroy their ability to speak, their behaviour, their memory and their movement.
... 'Giving them a few extra months to [prepare] before they deteriorate and cannot speak is important. This is an endpoint in itself, even if this drug does not improve overall survival rates.'
...At the moment, patients diagnosed with GBM are usually offered surgery to remove the tumour, followed by cycles of chemotherapy and radiotherapy. For most, however, relapse is inevitable and half will have died from the disease within 14 months. Around 25 per cent will manage to survive for two years, while fewer than ten per cent live for five years.
Avastin, which is made by the pharmaceutical giant Roche, works by reducing blood supply to the tumour and slowing its growth. It is already used to treat colorectal, breast and ovarian cancers.
Some patients in the UK already receive Avastin to treat recurrent forms of brain cancer, because it is not yet approved for this use on the NHS.... 'In principle, anything that slows the progression of GBM has to be a good thing,' he said.
'But this disease is such a minefield and it's important to remember different patients are affected differently, depending on which side of the brain [and the location D.W.] the tumour is found.
'My wife was climbing mountains after she was diagnosed but then the tumour progressed and it was on the left of her brain, so it affected movement, personality and memory.
'I would want any new drug to ensure it gives patients four more months when they can climb mountains and not four more when the disease has already robbed them of their speech and memory.'
It currently takes the average GP three months to diagnose GBM.
This is because symptoms include severe headaches, vomiting and blurred vision, which can be attributed to other conditions such as migraine. Sufferers may also experience an itchy head and feel as if something is running across their scalp.
Brain cancer breakthrough: Experimental vaccine trains immune system to target remaining tumor cells after surgery
November 14, 2012 by John Murray....
UC Irvine oncologists are looking for new ways to treat glioblastoma multiforme, the deadliest type of brain cancer. While surgery followed by chemotherapy and radiation is the current standard of care, it doesn't fully eliminate the cancer. The goal is to develop an additional therapy that seeks out and destroys the cancer cells that inevitably remain.
Dr. Daniela Bota is testing whether enlisting the immune system to fight the tumor can complement surgery, drugs and radiation and improve a patient's odds of surviving....
"Cancer cells are like crabgrass: Once they take root, they're hard to eradicate.... The immune system is powerful, but it must be trained to recognize these cancer cells before it can do its job."
Enter the experimental glioblastoma vaccine. Think of it as a personal brain cancer smoothie: Pulverized pieces of a patient's surgically excised tumor are blended in a laboratory with his or her own white blood cells. When injected back into the body, the concoction programs the individual's immune system with new targets – any remaining cancer cells....
A previous trial demonstrated that this vaccine is safe and, in some cases, doubled patients' median survival after diagnosis from 15 months to about 31 months....
A glioblastoma vaccine does not eliminate the need for brain surgery, which is also required to collect the cancer cells used in the "smoothie."...
"Everyone responds differently, but immunotherapy has a great chance to be the next leap forward in cancer treatment," Bota says.
Provided by University of California, Irvine
There is much more I could say on this, as it leaves many things open-ended. Another time perhaps – but lastly, and the most important thing – every case is different, depending on a variety of factors.
I may not comment on any or all comments, but others should feel free to discuss this in the comments section.
*Am I allowed to use the terms 'victims' and 'sufferers' for those struck down by GBMs? Some people object on the grounds that they are negative terms. Well guess what? It's not a positive disease! The terms are deadly accurate, so I'll use them if I like.
**In my case, my condition improved substantially – and immediately.
I imagine you have already considered explaining your experience to the relevant govt minister...who may not find their way to the blog. How common are these dreadful tumours?ReplyDelete
Been done. Standard response about competing claims, taking advice of the relevant authorities, etc.Delete
Brain tumours are now very common, and one of the fastest growing diseases in the young as well as the old. The stats are all there, but no research stats are ever up to date.
My one case is a drop in the ocean, however detailed it's documented. Too documented in the sense or material probably deemed irrelevant for most research. All I know for certain – and this is my mantra [in the pre-800BCE sense of 'mantra']: EVERY CASE IS DIFFERENT!
The variables are mind-boggling. The best research is that which ignores most of the current stats and tackles it head-on – antineoplasticity research e.g.
Oh, and to get the benefits of it here in Australia till it's gone through all the hoops, hang on for 5-10 years. Even then, you may benefit, if you can afford it….
Article in the recent New Scientist (17 Nov 12, p47-49) "Deprive Yourself".ReplyDelete
The article is about fasting, and in one section, its benefits against cancer are discussed as follows: "Mice with gliomas - a very aggresstive cancer and the most commonly diagnosed brain tumour in people - were more than twice as likely to survive the 28-day study if they underwent a 48-hour fast at the same time as radiation therapy than those without the fast (PloS One, vol.7, p e44603).
Clinical trials assessing the impact of fasting in people with cancer are ongoing. Early results are promising, says Longo, and patients in the advanced stages of cancer, who cannot wait for the results, might find it worth discussing fasting with their oncologist."
In this article, "fasting" is not necessarily going without food. In can include days in which one eats only one small meal at midday, consisting of around 1/4 of a normal day's calories.
Many moons ago I took up fasting one day per week, but I thought it meant no food, only water. Maybe honey and lemon in hot water. It was agony. I always developed a fasting headache and felt terrible for the whole day. I also craved food all day. So that didn't last very long. Had I known that one small meal could still be called fasting, I might have lasted longer than a year.
Perhaps Denis, you could eat nothing but blueberries for a day, or some other of your favourite anti-cancer foods. Chocolate?
Again, specifically for me, it's a problem of variables. Those studies, if transferred from Mice to Men [hah!] are performed on animals which, presumably, are young, aren't on Avastin, Clexane, and with kidneys falling apart.Delete
It's long been known that regular fasting for healthy people promotes longevity – look at the number of elderly POWs starved on the Burma railroad who are still alive, e.g., – and for people in certain brain tumour categories, this may be of benefit if there aren't too many other variables.
In mine, to do something that promotes health in one area – say, tumour inhibition – is exactly the opposite for the kidneys. [Don't worry, we've long researched the hell out of this, and Tracey has her own kidney donation to know what's good for kidneys and what's bad.]
Chocolate? According to some sources on eating when kidneys are already damaged, chocs are out! And though I kid myself a bit, dark choc does contain sugar, which brain tumours adore.
Aye, there's the rub.
As well, it is required for me to take pills four times a day, every day, with food. That blows fasting out of the water, even though by evening meal I've usually had nothing but a weetbix and a salad lunch. We keep evening meals to a minimal size avoiding verboten items for the most part. The 4th food with drugs for the day is usually with a slice of fruit.
You are so right about decisions to fast. The moment you decide to, you can think of nothing but food!
Hence the caution to consult your oncologist. In another part of the article, which is worth reading anyway, a researcher suggests that it might be the lower intake of protein rather than the fasting that has the positive effect on reducing tumour activity.Delete
I suspect that you're basically on a kind of fasting diet anyway, Denis.
Re the problem with fasting. It's only the first day that the craving for food is a torment. If one can get up the determination to do a longer fast, after the first day, the craving for food disappears, and one can only marvel at other people, who seem to be eating all the time.
I agree about the one-day thing. Someone says your stomach shrinks in that period [maybe there's just a reduction in gastric juices, but 'shrinkage' is more dramatic!] and if so, its expectations are lowered – but whatever the reason, no doubt at all that it's much better after that 1st day if you're on a diet.Delete
As to the protein/tumour relationship, I've never seen it expressed in any direct form like that, but of course it would need to be backed up by evidence. Yes, I'm on a diet that isn't too high on protein, but it's also been suggested that if the kidneys are, to use a medical friend's terminology, "leaking" protein, to lower intake too much could cause a protein deficiency, with its attendant effects.
I need a drawing of a see-saw board resting on a hemispherical fulcrum, and dropping all these variables on one side of the board or the other to create an image of how tricky it gets!
The NewScientist, by definition, wouldn't publish anything that isn't backed up by scientific evidence. It's not the Fortean Times :). Articles on cancer appear frequently, and as you would expect, most of them concern cutting edge research and trials which are not available to cancer patients in Australia yet. Because the magazine is just that, a magazine, and not a journal, one would have to follow up any article for more indepth research papers, for and against.Delete
The protein suggestion arose from long term research into diets of healthy people, some of whom developed cancer. The findings suggest that people on low protein diets, in particular vegans, have the lowest incidence of cancer. Although vegans have to eat a certain amount of complete protein in order to stay healthy, they get it from plant proteins, such as soy, mushrooms, avocados, nuts, seeds, and combined pulses and grain dishes. The percentage of protein in their diets is about half of that of the average meat eater.
Also, the evidence that eating fish reduces heart disease might also be down to the reduction of red meat rather than anything in the fish, which turns the Omega 3 argument and the burgeoning fish oil capusule industry on its head.
I like the NewScientist for this reason -- it not only profiles current research leading to future medical treatments, but also provides useful information that puts some control into the hands of the average person, i.e what we put into our mouths with those hands.
I suspect, Denis, that one of contributing factors to your being here, still blogging, is your diet. I ask again that you write a piece for the rest of us on what you have done on your own to supplement the medical treatment you've received.
If changing our diet to include more blueberries and less red meat means that one of us does not get the GBM4 that fate had planned, we need to know the details and start now.
I think the fasting phenomenon has to do with addiction. We're addicted to eating a certain amount of food at specific times of the day. It takes only one day of tormented fasting to break that addiction. The body stops hollering for food on the subsequent days of the fast. A bit like a child's tantrum. When you don't get the sweeties, you stop the futile screaming.
Joan: in the fog of 00:30 last night I misread what you asked about diet and thought you were talking more generally. I composed something now irrelevant to your question but will keep it for another posting. But I do want to say something about diet. It may not be what people expect. I'll get back to it after my weetbix!Delete
Well, that's weird. Or maybe not so much because I'm a bit confused at the moment. I thought I had posted my response. This is what I have had sitting there in draft form:Delete
That all makes sense. I wasn't questioning New Scientist's science, but as I'm coming to the part of my life where all the traffic's jamming up in the direction I'm going, many of my observations are starting to be based on being selfish rather than how humanity can benefit. In case I don't manage to get to writing that piece, here are my general and possibly useless platitudes to a person in my position:
1. Get lucky and have a partner/carer who loves you even though you're getting increasingly useless and troublesome. Love and be kind to them back. Imagine it from their side.
2. [Associated with 1.] Identify and avoid stressful situations as far as possible. What's below may help to do that.
3. Understand as fully as you can the condition you are dealing with. [That's where those NS articles and others do come in handy.]
4. Be aware that factors you didn't think of may influence your condition.
5. Know you have to make decisions based on limited evidence, and don't think of those decisions in terms of 'right' and 'wrong'. Don't waste time on regrets and saying 'I wish I had/hadn't done....' [because you didn't/did, and nothing can change the past.]
6. Go with it as much as possible and don't beat your head on a brick wall. Know when to 'yield'. Learn from your 'mistakes'. It may well turn out they weren't, even though you may never discover that.
7. Assume everyone round you has good intentions, even if they offer bad advice /help. They don't understand your situation even though they think they might. Be gracious. I know no-one whose intentions were/are bad.
8. Each day you wake, say 'I'm still alive'. Enjoy, if possible, what that day has to offer.
9. Learn what meditation or yoga really mean. That way you can be the best possible Christian, Jew, Hindu, Buddhist, Muslim, non-theist, atheist, agnostic or Jedi knight.
10. Find out what I mean by No 9. Your fears will be fewer.
Thank you Denis. When I read the last point, at first I thought you meant we should find out what the Beatles meant by "Number 9". Do you remember that cut on the White Album in which the phrase "Number 9, Number 9" is repeated throughout the cacophony and then the cut ends abruptly with silence?Delete
What the Beatles meant and what you meant are strangely synchronistic. For "Number 9" represented a meditation mantra which the meditator keeps bringing in to the constant stream of meaningless and unconnected thoughts arising in the mind. The silence at the end is the transcendence of thought into pure consciousness.
How clever of you, Denis :).
To your very helpful list I now can suggest people add the recent publication by Christopher Hitchens, MORTALITY, in which he describes his experience of illness and decline. Carl read it right through yesterday (it's very short), and he read excerpts out to me which echoed many of the things you have said in this blog, Denis. It was like listening to something you had written.
We recommend this book to all on this blog, sufferers, friends, and carers.
Lovely, but instant seizures! [Replying to Joan's now....]Delete