This is the story of a personal tragedy for my wife and all who love her, but one with which all too many families are also familiar. As many of you know, my wife was treated for Pancreatic Cancer in late 2006 and early 2007. I wrote about it here at Booman Tribune at the time. We thought ourselves lucky that her cancer, usually a death sentence, had been caught early before it metastasized, while surgery, chemotherapy and radiation could still save her life. What no one prepared her or I for, and what many newly diagnosed cancer patients are not told, is that many standard chemotherapy treatments can have serious long term effects on the brain and a patient’s cognitive function, long after the treatment is over.
This condition even has a name, one given it by the cancer patients who suffer from it: Chemo Brain:
. . . I have another strike against me: the prospect of getting “chemo brain” from heavy-duty chemotherapy, should it ever become necessary. This is one of the hidden dangers of … most cancer therapy[…]
Researchers tend to talk about “multiple non-overlapping toxicities” and doctors tend to use phrases like “well-tolerated” when describing some of these regimens. (I suppose whatever doesn’t kill you is something that, grading on a curve, you can tolerate well.) But in plain old common sense English, pump your body full of stuff that destroys cells and don’t be surprised if it does something in the brain.
I first heard the expression “chemo brain” from my sister, who was diagnosed and treated for breast cancer in 2007 while I was visiting her after her first course of chemotherapy. No one had told me about this possible “complication” before. I had to hear it first from a another cancer patient. Yet as she described her problems with memory loss, confusion, inability to concentrate or focus on even simple tasks, and other cognitive impairments, I immediately recognized someone I knew with the very same concerns: my wife.
All through her treatment she remained calm and focused on getting well. Despite her severe nausea and fatigue she experienced, and the terrible pain she endured after her surgery (which left a 12 inch scar across her belly) she radiated a cheerful and positive attitude about her illness toward her family, and especially her children. Only once did I see her break down in tears, and then only for a few minutes. She maintained control of her faculties and continued to consult with her co-workers when necessary on projects for which she had been responsible.
However, since her treatment for cancer ended in March 0f 2007, we have seen a clear and continuing decline in her ability to function. This was a brilliant woman, a graduated from an Ivy League school, then from law school. A woman who had previously worked at a major law firm, and was now a senior diversity management supervisor at a Fortune 500 company who had frequent contact with senior executives, including the CEO of her company, as well as national recognition from her peers in the diversity management field.
Now she battles severe short term memory loss, constant anxiety, rapid and unpredictable mood swings and other cognitive impairments that worsened over time and forced her to leave her job and apply for disability. Here’s how I recently described her behavior to our doctor in an email I sent him:
I should also tell you ____ seems to be deteriorating even more than usual. Perhaps it is the stress of completing her disability claim forms, but her mind is not doing well (memory loss, lack of focus and clarity, disjointed rambling speaking patterns, obsessive behaviors) … She is talking to herself a lot and [is] often quite irritable, having also a greater propensity for mood swings. She will often become quite manic and agitated. When she is happy or excited (and even the smallest bit of “good news” can trigger this response) her mood is excessively joyful, more than one would expect. When angry she may yell or behave very inappropriately. Verbally if you respond to her with more information than she can handle, she can express great anxiety. Our conversations, such as they are, consist primarily of monologues on her part with very few interjections (usually no more than one word or sentence) by me. If I try to tell her something about myself or about something I think relevant to our “discussion” I can be abruptly told to shut up, or to stop distracting her. I’ve learned over time to keep my mouth shut when she converses with me except to respond to specific questions. Nonetheless, because of her rambling, disjointed manner of speaking it can be quite agonizing at times for me.
Some people get a mild case of “chemo brain” and our are able to recover most of their normal brain function, but for many, such as my wife the condition is long term and extremely debilitating. Of course, even today, many doctors, drug companies and medical professionals claim that “chemo brain” is a myth. They often claim, despite little if any evidence to support their thesis, that chemo brain is merely a function of the psychological distress that any diagnosis of a life threatening illness such as cancer. They pooh pooh the idea that the toxic chemicals we use to treat cancer could have any long term effects on one’s health, particularly effects on a cancer patient’s mental health.
Research in Australia and the United States indicates chemotherapy’s effects on the brain might be exaggerated.
Researchers found that the stress of being diagnosed with breast cancer, rather than the chemotherapy used to treat it, may be the cause of patients’ problems with memory and concentration.
“Chemofog” – impairments in memory and in thinking that have been attributed to chemotherapy – was not detected in two studies of women being treated for breast cancer, according to a presentation at the American Academy of Neurology.
How did these researchers test for the effects of chemo brain? By using a written test! No physiological testing, no MRI scans, no sophisticated neurological studies of brain chemistry. No, they based their opinion on how 30 cancer patients responded to a “cognitive assessment tool” that was developed by a company I’ve never heard of before. Oh and by the way here’s a little piece of information about the study’s principle author, one which might influence how you assess the quality of his research:
Dr. Darby reports that he received salary support from CogState Ltd and holds stock and stock options in CogState Ltd. He also has received research support from Pfizer Australia.
In other words, his research was funded by one of the major pharmaceutical companies with a vested interest in not finding evidence that chemo brain is anything more than a delusion of hypochondriachal, stressed out cancer patients. He also has a personal financial interest in the company that developed the “assessment tool” that was used in this study. Think that might have had an effect on how his study was structured and the results he “found?” I do.
Sadly, I believe their non-published studies distort the truth about the reality of “chemo brain,” at best, and lies, at worst. How do I know? Because at the same time they were using their non-invasive “cognitive assessment tool” to examine these cancer patients, researchers at Harvard and The University of Rochester found a link between one of the chemotherapy drugs my wife had pumped into her on a daily basis for six weeks, 5-fluorouracil or as it is commonly called, 5-FU:
A team of researchers at the University of Rochester Medical Center (URMC) and Harvard Medical School have linked the widely used chemotherapy drug 5-fluorouracil (5-FU) to a progressing collapse of populations of stem cells and their progeny in the central nervous system.
“This study is the first model of a delayed degeneration syndrome that involves a global disruption of the myelin-forming cells that are essential for normal neuronal function,” said Mark Noble, Ph.D., director of the University of Rochester Stem Cell and Regenerative Medicine Institute and senior author of the study. “Because of our growing knowledge of stem cells and their biology, we can now begin to understand and define the molecular mechanisms behind the cognitive difficulties that linger and worsen in a significant number of cancer patients.”
Cancer patients have long complained of neurological side effects such as short-term memory loss and, in extreme cases, seizures, vision loss, and even dementia. Until very recently, these cognitive side effects were often dismissed as the byproduct of fatigue, depression, and anxiety related to cancer diagnosis and treatment. [emphasis added] Now a growing body of evidence has documented the scope of these conditions, collectively referred to as chemo brain. And while it is increasingly acknowledged by the scientific community that many chemotherapy agents may have a negative impact on brain function in a subset of cancer patients, the precise mechanisms that underlie this dysfunction have not been identified. […]
While these effects tend to wear off over time, a subset of patients, particularly those who have been administered high doses of chemotherapy, begin to experience these cognitive side effects months or longer after treatment has ceased and the drugs have long since departed their systems. For example, a recent study estimates that somewhere between 15 percent and 20 percent of the nation’s 2.4 million female breast cancer survivors have lingering cognitive problems years after treatment. Another study showed that 50 percent of women had not recovered their previous level of cognitive function one year after treatment. […]
The scientists conducted a similar series of experiments in which they exposed both individual cell populations and mice to doses of 5-fluorouracil (5-FU) in amounts comparable to those used in cancer patients. 5-FU is among a class of drugs called antimetabolites that block cell division and has been used in cancer treatment for more than 40 years. The drug, which is often administered in a “cocktail” with other chemotherapy drugs, is currently used to treat breast, ovarian, stomach, colon, pancreatic and other forms of cancer.
The researchers discovered that months after exposure, specific populations of cells in the central nervous – oligodendrocytes and dividing precursor cells from which they are generated – underwent such extensive damage that, after six months, these cells had all but disappeared in the mice.
Oligodendrocytes play an important role in the central nervous system and are responsible for producing myelin, the fatty substance that, like insulation on electrical wires, coats nerve cells and enables signals between cells to be transmitted rapidly and efficiently. The myelin membranes are constantly being turned over, and without a healthy population of oligodendrocytes, the membranes cannot be renewed and eventually break down, resulting in a disruption of normal impulse transmission between nerve cells.
These findings parallel observations in studies of cancer survivors with cognitive difficulties. MRI scans of these patients’ brains revealed a condition similar to leukoencephalopathy. This demyelination – or the loss of white matter – can be associated with multiple neurological problems.
“It is clear that, in some patients, chemotherapy appears to trigger a degenerative condition in the central nervous system,” said Noble. “Because these treatments will clearly remain the standard of care for many years to come, it is critical that we understand their precise impact on the central nervous system, and then use this knowledge as the basis for discovering means of preventing such side effects.” […]
… The study was funded by the National Institutes of Neurological Disorders and Stroke, the Komen Foundation for the Cure, and the Wilmot Cancer Center.
Gee, no major pharamceutical company funded this research, I wonder why? Oh, and by the way, earlier peer reviewed studies published in the Journal of Biology had also linked the cancer drugs “cisplatin, carmustine and cytarabine” to “long-term brain damage,” the death of “neural stem cells and oligodendrocytes, which produce the myelin insulation needed for normal neuronal function” and “impaired neural stem cell division.” In addition:
A Japanese study published [in 2006 ]in the journal Cancer found that breast cancer patients undergoing chemotherapy suffered temporary shrinking in brain regions that control memory and concentration.
A 2006 study by UCLA scientists also found support for the reality of Chemo Brain:
A new UCLA study shows that chemotherapy causes changes to the brain’s metabolism and blood flow that can linger at least 10 years after treatment. Reported Oct. 5 in the online edition of the journal Breast Cancer Research and Treatment, the findings may help to explain the disrupted thought processes and confusion that plague many chemotherapy patients.
So the neuorological damage that chemotherapy drugs can cause is hardly the myth that some medical professionals would like you to believe. Yet, if that is the case, why has there been such little interest in discovering the truth about the effects of these toxic chemicals on brain function? Well, I suspect a conspiracy of silence among both the drug manufacturers who make billions of dollars from the sales of these drugs each year, combined with doctors who didn’t want to believe what their own patients, particularly female patients, were telling them. They wanted to believe that the life saving drugs they administered, despite their known toxicity (indeed, many cancer patients die from the physiological damage caused by the drugs) couldn’t possibly be associated with brain impairment or “mental conditions.” Those had to be related to stress or fear or other pre-existing psychological issues.
These were women after all, known to be hysterical and over emotional. It was easy to dismiss their claims as being unrelated to the great and powerful cancer drugs that oncologists and the pharmaceutical companies relied upon to make their living, and generate profits, respectively. There is big money to be made in treating cancer these days, both by the clinicians who administer these drugs, and the pharmaceutical companies that produce them. And therefore good reasons to finance flawed studies like the one described in The Age, above, while ignoring studies that point to the very real harm these drugs can cause to the brain function of cancer patients.
Chemo Brain is real. Don’t let any doctor or pharamceutical representative tell you otherwise. This is one more way in which our health care system is not looking out for your interests, and one more reason we need a de-politicized FDA, NIH and CDC where corporate lobbyists for Big Pharma aren’t calling the shots behind the scenes and distorting the truth about the effects of the drugs they promote and sell. The story of the repression and denial of the medical condition called Chemo Brain is just one small thread in the vast web of corporate deceit and manipulation of health care consumers for the benefit of large multinational corporations. And one thing is certain: it ain’t the only one.
