Posts Tagged ‘Stage 3’

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The Story of the Disconcerting Brain Scan or First Hand Schooling in Hume’s Problem of Induction

July 4, 2016

hume

(Wipe that smug look off your face!)

On June 23rd, Holly and I went in for my quarterly MRI check-up. I laid perfectly still on the MRI table for the usual 20-minute scan before they added a contrast to my veins and scanned for another 10-minutes. When the scan was finished we went upstairs to my neuro-oncologist to get the results, assuming they would be the identical “all-clear” that we were used to over the past two years. It turned out to be a classic example of  my homie David Hume’s problem of induction, “That the sun will not rise tomorrow is no less intelligible a proposition…than the affirmation, that it will rise.” We just weren’t expecting anything this soon. Lesson learned, Mr. Hume. Lesson learned.

Turns out there was a tiny bit in my brain that was taking up contrast and lighting up. Holly knew something was up when they took us back almost an hour early. My doctor, Sarah Taylor, said they hadn’t got a report from the radiologist yet, but because it was white on the scan that she was concerned. She made an appointment with a neurosurgeon for the following Monday and said that she’d present it to the tumor board for discussion Monday morning.

“Boo! Hissss!”

No customary celebratory sushi for the Staytons.

We went in to the neurosurgeon, Dr Chamoun, on Monday and it was more of the same. No decision could be made without cracking my skull back open. But there were only three things it could be:

1.) Slight benign tumor growth. *M’eh not too bad…*
2.) Malignant tumor recurrence. *Worst possible scenario!*
3.) Radiation necrosis. (Dead cells only now appearing from my radiation treatment 2 years ago. Apparently this is not abbynormal.) *Best possible scenario??*
 
A consensus was reached between Holly, Dr. Chamoun, and myself that we should just watch it more closely. So, instead of an MRI every 3 months we’re going to go with every 6-8 weeks, now. The doc’s want to watch a.)if it continues to grow, b.) the rate of growth, and c.) if it does continue to grow they want to note if and when the growth tapers off. If it’s necrosis the growth may continue for 6-9 months before eventually tapering off as the body gets rid of the dead cells. If it’s a tumor it will continue to grow. “yea.”
 
Neither the doctors nor I think the surgical risks (infection, anesthesia problems, clots, stroke, seizures, etc.) nor the spot’s size or location (it’s apparently close to the speech area so they would have to keep me awake to ensure they don’t cut out anything important) are worth slicing me back open just yet. Especially if it turns out to just be necrosis.
 
It’s weird, at 37 years old, when you get told your best option is just dead brain cells. Who ever thought, right? I’ll keep you all updated, me droogies!

 

Hume, David. An Enquiry Concerning Human Understanding (1772). Hackett Publ Co. 1993; Chapter on Cause and Effect.

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Nobody tells me nothin’…

June 6, 2016
banner_headforcure
Apparently it’s National Cancer Survivors Day. Nobody tells me nothin’.
Well, in honor of this day, team Nogginators have assembled to participate in the MetroKC Head for the Cure 5K event on August 28th to raise funds expanding medical research for brain cancer treatments! With over 120 different types of brain tumors, and that pesky blood-brain barrier, effective treatments are extremely difficult to find. So, we need all the help we can get!
Come participate in the 5k, by joining the Nogginators! Or help provide support for the 700,000 brain cancer survivors, such as myself, by donating to the Nogginators! To do so click on the Head for the Cure banner at the top of this page. There will be a welcome site with (2) buttons near the bottom of the page that allow you to participate, “Join Team” and “Donate“. Please give us a hand by donating at whatever level you’re comfortable with.
The Nogginators thank you for all your support!
More updates and information coming soon…
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Bwian duh Bwain Tumowr

March 13, 2014

On Tuesday, March 11, Holly and I went to the hospital to meet with Dr. Litofsky (neurosurgeon), Dr. Johnson (radiologist) and Dr. Doll (medical oncologist) to determine a plan of action to get rid of my brain tumor. We’re on information overload so the essay may be a little drier than usual. Being the infinitely curious type, I tried to scatter links around to satisfy anyone else with a similarly inquiring nature. “Knowledge is power,” as my main man Francis Bacon says.

Pre-Surgery (022414)

World, meet Bwian!
Bwian duh Bwain Tumowr!

TYPE:

We got more specific info on Bwian yesterday. He’s a low-grade Stage 3 Glioneurocytoma. He’s apparently a complicated mess containing multiple different glial (brain) cell types. The majority of the cell types are low-grade (slower division rate) Stage 3 (anaplastic) astrocytoma cells, but oligodendroglioma cells are also dividing in an abnormal fashion. In addition, the minor component was a dysembryonic neuroepithelial tumor. Oligodendroglioma cells can have missing genetic markers that allow it to be more easily treated by chemotherapy. But I’ll talk about that later.

THE PLAN:

About twenty doctor’s met yesterday morning (03/12/14) to determine my fate. There was some division among the ranks due to the multiple cell types, stages, and tumor types. The consensus is to treat with the combined three pronged approach of chemotherapy and radiation therapy along with the co-deletion of the 1p/19q chromosomal oligodendroglioma arms (all explained below).  Both therapies start on St Patty’s Day. I really wish I would have realized that before I scheduled it… Guess I’ll have to settle for a good Sunday drunk!

RADIATION:

My radiation therapy (RT) is prescribed daily, Monday through Friday, for the next six weeks. It’s very quick and relatively easy (other than the potential side effects) as I’ll be in and out in fifteen minutes. Not too shabby, I say!

HOW IT WORKS:

Radiation uses high doses of radiation to kill cancer cells and stop them from spreading. My head will be strapped to a table, under a mask made of wire mesh, to prevent any movement. We don’t want my eyeballs zapped! While lying on the table three beams of radiation will be aimed at the leftovers of my tumor to irradiate that nasty cancerous DNA.

CHEMOTHERAPY:

My chemotherapy will use a drug called Temodar. I will take it before bedtime each night. It is prescribed concurrently with RT but will continue for at least 6 months after RT. Blech! Makes me want to barf already! Speaking of…to combat 7-1/2 delicious months of potential sickness, I am also being prescribed an anti-nausea pill called Zofran, a serotonin blocker, to (cross your fingers!) prevent nausea and that general sticky, icky feeling. It is prescribed to be taken at night with the Temodar and in the morning when I wake up.

SIDE EFFECTS:

Both radiation and chemotherapy are poisonous. Their side effects are similar and include fatigue, hair loss, skin changes (dry skin or skin burns) from high radiation dosages, and the possibility of nausea. I’m one of those people who never gets sick – no headaches, no vomiting. So, my fingers are crossed that my generally robust nature combined with the prescriptions will help deter any of these nasty symptoms. My doctor said that 90% of his patients are able to avoid sickness with the use of Zofran. We will know the side effects of the chemotherapy immediately, but side effects for the RT will not start for a couple of weeks. Considering the concurrent treatments and side effects and the delay in RT side effects, I’m preparing myself for a potential worst case scenario beginning two-weeks into radiation and lasting for six weeks. It sounds bad, but I assure you that timeframes make all the difference as far as I’m concerned. I like to know when I can expect the worst.

*1p/19q GENETIC CO-DELETION

One very good piece of news we received yesterday is that portions of the tumor were noted as being oligodendroglioma cells. These have a potential weakness in that they may be vulnerable to what is called a genetic co-deletion. This method uses techniques of molecular biology to delete the 1p and 19q chromosomal DNA arms which makes them more susceptible to the toxic affects of chemotherapy. Ah, the wonders of medical science! The 1P/19q test results came back positive on my tumor. So, the missing genetic markers can in fact be co-deleted. Yip! Yip! Turning these genes “off” will make chemotherapy more successful against these oligodendroglioma cells. I’m ok with one less cancerous cell to worry about! In the end, it gives me a better long-term survival rate as the chemotherapy will be able to wipe out a greater percentage of the cancerous oligodendroglioma cells thereby extending the timeframe in which a tumor of this type may reoccur in the future.

Don’t quote me quite, yet, but it could all be much worse than three pills and fifteen minutes of radiation a day. While I may be miserable for a 7-1/2 months, I’m not on an IV, I’m not required to take injections, and I’m alive to annoy my wifey!

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The Median Isn’t the Message

March 10, 2014

Audio of Evolutionary Biologist Professor Stephen Jay Gould’s essay The Median Isn’t the Message.

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THE MEDIAN ISN’T THE MESSAGE

March 10, 2014

THE MEDIAN ISN’T THE MESSAGE

by Stephen Jay Gould

PREFATORY NOTE

by Steve Dunn

Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo’s Smile, The Mismeasure of Man, Wonderful Life, and Full House.

As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn’t the Message is reproduced here by permission of the author.

THE MEDIAN ISN’T THE MESSAGE

by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action – if it feels good, do it – while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What

is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge – and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.

The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” – the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound – for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out – left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower

boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half – it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran – for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances – substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah – set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.

POSTSCRIPT

By Steve Dunn

Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.

In March 2002, Dr. Gould published his 1342 page “Magnum Opus”, The Structure of Evolutionary Theory. It is fitting that Gould, one of the world’s most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman – but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn’t The Message.

From the website:

http://cancerguide.org/median_not_msg.html

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Test Results for Mikey’s Brain Lesion

March 6, 2014

Test results are slow and steady in the tumor world, but we have an appointment for next Tuesday (03/11/2014) with the neurosurgeon, radiologists, and oncologists to gather more detailed questions and form a plan of attack for what is left in my head. They removed the majority of the tumor but the brain being as wrinkly as it is couldn’t get it all.

The news is ever so slightly worse than we expected, but I would hardly say its bad news, at all.

The tumor sample came back as a:
“PRIMARY, LOW GRADE, STAGE 3, ANAPLASTIC GLIONEURONAL TUMOR.”

Image

The air pocket is normal (surprisingly) but the darker area on this CT scan (area of my finger) shows the location of the baseball-sized tumor. (Note the CT scan works from the direction of the feet. So, it really is the left if looking up.)

I’ll try to unpack it for yinz:

DEFINITIONS:
A “PRIMARY” tumor means that it is not a tumor that has spread from another part of the body. It originated from within the brain.

“LOW GRADE LEVEL 3” represents the:
“Level of aggressive division among the cells or how quickly the cells are dividing.”

This means that while most of the cells within the tumor are dividing at a “Stage 2” level of aggressiveness, there are instances of “Stage 3” division in the sample. An exact percentage is probably unknowable (nerd time!).

The word “ANAPLASTIC” indicates that the tumor is either a Stage 3 or 4 which is a malignant and abnormally forming cancerous tumor.

The term “GLIONEURONAL” identifies the source of the brain cells as what are called the glial cells which are abnormally dividing.

I think one consideration that adds a source of hope is, as Katie Czucjecko Paynter may say, “location, location, location!” Being in the left frontal lobe of the cerebrum it’s basic cognitive function skirts all the autonomic functions of the body while processing thinking, learning, problem solving, emotions, speech, reading, writing, and voluntary movement. The idea that the tumor was located on the exterior portion of my skull means that there’s only one thing between the outside world and what they left of the tumor – a thin layer of bone! It’s not hidden in the brain stem or under the pituitary gland. I feel that it has shown itself and is just waiting to be plucked. And I’m ok with that! I feel I could not have been luckier for it to be located where it was. It could have been much, much worse.

Radiation and chemotherapy will occur so we’ll have to wait until Tuesday to find out the level of therapy and discover how it will affect my personal treatment.

All I know is that I would much rather the doctor’s overtreat my tumor and get rid of it than under treat it and have it come back from remission.

If anyone wants to know more about brain tumors, the best place we’ve found is:
braintumor.org
It has easy to read definitions and avoids professional research styled work (aka, it tells you what you need to know!). So, check it out if you’re interested!

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