Chemobrain: a doctor’s view


An interview with Dr. Jorg Dietrich of Massachusetts General Hospital

The title of the article is a mouthful: “Clinical Patterns and Biological Correlates of Cognitive Dysfunction Associated with Cancer Therapy.” It made its debut online on Nov. 19, 2008, in the online version of the journal “The Oncologist.” (Many of the most tradition-bound peer-reviewed medical journals now publish shorter, “express” versions of their articles online first. Abstracts – a short summary of the main points – are often available free on PubMed)

But the article, by Dr. Jorg Dietrich at Massachusetts General Hospital in Boston, and colleagues at Stanford University and at the MD Anderson Cancer Center in Houston, contains a thought-provoking theory about what might be causing some symptoms of chemobrain (Dr. Dietrich, a physician who also has a PhD, is a clinical fellow in neuro-oncology at the Stephen E. and Catherine Pappas Center for Neuro-Oncology at Massachusetts General in downtown Boston.)

Let’s be clear: the researchers never actually use the term chemobrain. By most accounts, that is too colloquial and imprecise for scientists. And it is not entirely descriptive, either, because Dr. Dietrich and his team found that people treated with radiation also had problems with memory and thinking. They use terms like neuro-cognitive deficits and cognitive dysfunctions. But the symptoms they are talking about are unmistakably chemobrain: Forgetfulness, difficulty concentrating, trouble staying organized. An overall feeling of “spacing out.” (And, yes, the researchers did use that highly non-technical term!)

The researchers found that adults reported cognitive symptoms soon after they started chemo. “Frequently,” Dr. Dietrich and his colleagues wrote, “these symptoms persist after completion of therapy and are a cause of considerable distress for individuals who are unable to return to their previous academic, occupational, or social activities, or are able to do so only with significant additional mental effort.” These symptoms, they note, can persist, or even emerge later.

So what might be causing this? Tests in the lab and reviews of brain scans found damage to regions in the brain where newborn cells are developing. This view of the brain is relatively new, according to researchers. “We have learned in the past decade that, contrary to our initial belief, the brain has the potential to repair itself.”

But inflammation caused by radiation, and the toxic drugs used in chemotherapy, can strangle these newborn cells in the crib, essentially.
The image I am using here – strangling a newborn – is a bit crude and perhaps sensational, intended to signal the importance of this process of re-creation that is needed to maintain the brain’s structure. Dr. Dietrich, in an interview, uses a more elegant metaphor: a fertile field where crops can thrive. “If you essentially cut off the water source for a cornfield, you will not be able to grow anything in the years to come,” he says from his office at Mass. General. “This is essentially what happens. If you stop the production of newborn cells, you will have to deal with the consequences years down the road. Because you wipe out an essential proliferating pool of cells that is needed. Some are the stem cells to just rebuild what is lost. If you don’t have these tools available, then essentially no more repair mechanisms can take place.

“A simple way to put it is an early aging process that has been triggered. Because that is exactly what happens during aging, you lose some of these potentials to repair, and with these kinds of treatments you actually let the organism prematurely age.”

Here, in Q&A format, is more of my interview with Dr. Dietrich. (And, as an aside, he is an articulate man who seems passionately committed to listening to his patients, and to speaking with them honestly about their illness, the treatments available, and what to expect.)

Q. You found that both chemotherapy and radiation affect these newborn cells, which you call neural progenitor cells, in the brain. What is damaging the cells? And do chemotherapy and radiation cause different sorts of problems?

A. The radiation [studies] are a little older, and I think they have paved the way for allowing the chemotherapy studies on the toxicity on the human brain. The mechanisms of how radiation affects the human brain are somewhat different than toxicity from chemotherapy. We know that patients who are exposed to radiation treatment show signs of inflammation. And inflammation itself in the brain may cause a whole cascade of negative side effects.

One of the most important side effects that we see, in terms of symptoms, is cognitive impairment that may propagate even years after radiation treatment has been finished. Radiation may impact the rejuvenation of brain cells and mainly has negative effects on the newborn neurons. We have learned in the past decade that the brain is actually able to repair itself to some degree, contrary to what was originally thought.

This alone was a revolutionary finding — to see that there are certain areas in the brain called germinal zones that are on a daily basis engaged in providing a source for newborn cells of all lineages. These newborn cells become neurons, which are key for the neuronal network. They also become the support cells, called astrocytes and oligodendrocytes. They are suffering, and may not allow the neurons even to work properly.

Q. So for people who get radiation therapy, it is inflammation that causes serious problems?

A. Inflammation is one of the consequences of radiation to the brain. And it is probably one of the key reasons why cells in the germinal zones of the brain stop dividing and why the generation of new neurons is impaired.

Q. And that can affect memory?

A. Yes. One of the target areas that suffers most under radiation treatment is the hippocampus formation, which is critically important for storing and retrieval of memory.

Q. How is chemotherapy different?

A. With chemotherapy, it looks like some of the mechanisms are very different because inflammation may not play an important role at all.
Unlike with radiation, chemotherapy appears to compromise the generation of newborn neurons and glia cells throughout the brain, although these effects are most notably in the germinal zones and so called white matter tracts – bundles of cells and fiber tracts that connect different areas of the brain. In this regard, chemotherapy is probably more broadly targeting all [cell] lineages at the earliest stages. And with that, the network system, the overall brain function, and just the ability of the brain to do its job cannot be fully maintained. I think this is one of the key differences between both treatments.

Q. What about patients who receive a combination of radiation and chemotherapy?

A. Some patients only receive one type of treatment and others receive a combination, so the ones who are essentially exposed to both kinds are the ones who are considered to be  at highest risk to develop side effects.
Q. What was the biggest surprise in your research?

A. In terms of the chemotherapy treatment, one of the most surprising outcomes I must say is that patients who don’t even have a brain disease, who are treated, let’s say, for breast cancer or for lung cancer, may develop toxicity to the brain over the long term, over the years to come.
Unfortunately, right now, we have no good means of following this, or identifying the patients who are at highest risk, or even to define means of protecting the brain.

Q. Protecting the brain seems so important – are you optimistic that some way can be found to accomplish this?

A. In chemotherapy, there is a good analogy that has been well studied and accepted in the cancer / oncology community, and that is toxicity in the bone marrow.

Bone marrow typically suffers with many forms of chemotherapy treatment. And this is why we closely observe patients on a regular basis to see how the bone marrow behaves. And when the bone marrow suffers and certain lineages like the platelets or the white counts drop significantly, and there is an increased risk of bleeding or infection, then chemotherapy will be put on hold until the bone marrow recovers. This is the standard.

In the bone marrow again, to compare this organ system with the brain, we have ways to protect the bone marrow. We can give support agents to help the bone marrow to repopulate again — growth factors are given subcutaneously [under the skin] by injection or intravenously [into a vein]. And with this the bone marrow is able to get some mileage and rebuild cells quicker and patients are functionally maintained so they can receive further treatment.

Q. That’s a good analogy, one that everyone has heard of or read about. How does this relate to the brain?

A. We feel that similar mechanisms exist in the nervous system. But we currently have no means of thoroughly monitoring damage to the brain in order to say, “Well this patient has now developed a very notable drop in his brain repair capacity. And we need to put chemotherapy for at least a month or so on hold to let the brain recover.”

Q. What does this mean for the whole field of chemotherapy as a cancer treatment?

A. Chemotherapy is one of the hallmarks and cornerstones of cancer therapy and will be in the foreseeable future. But we need to define ways of monitoring patients better, either with imaging or with certain cognitive assessments in order to identify the ones most at risk and then to choose treatments appropriately. In addition, there is a strong need to develop strategies to more effectively protect the brain, especially in patients treated for cancer outside the nervous system.

Q. That’s a goal of your research?

A. Yes, I think that is the main goal, this is the direction we want to try to move the field.

Q. So you are in essence calling for more research to develop better ways to monitor patients treated for cancer in regard to their brain function and to identify both protective and brain repair strategies to be used in affected individuals.

A. Correct, I think there are three big areas where one has to move forward in the future.

One is to define ways to better monitor patients who are at risk and who are developing side effects — dementia, cognitive issues, trouble with concentration and attention, fatigue, all of these are part of a syndrome complex that is explained by the damage to these germinal zones and connecting fiber tracts.

The second point is having protective agents at hand to be used in patients who are receiving chemotherapy drugs that may damage the brain. There is already an array of different agents available and being currently tested in laboratories.

The third point is to routinely employ certain drug screening assays [tests] to identify agents that may potentially be harmful to certain brain cells, even before these agents are used in patients. The scientific knowledge in this area has steadily increased over the past few years and we have learned that potential harmful effects on brain cells may not be identified if less sensitive drug screening assays are used in pre-clinical testing. In other words, as much as novel drugs are rigorously tested for bone marrow or other potential organ toxicity before these drugs are released and approved by the FDA, more sophisticated screening tests will need to be used to identify potential nervous system toxicity.

Q.  Some doctors I talked to said chemotherapy does not cross the blood-brain-barrier, and that you’re on the wrong track if you believe it does.

A. Yes, I think this is a misbelief. While certain drugs certainly may cross the blood-brain-barrier easier than others, current research has put this question on a more scientific footing. Our increasing scientific understanding in this area still has to translate into clinical practice and it will have to be accepted in the oncology community that chemotherapy can be a major cause of toxicity to the brain. The good news is that the brain actually has recovery potential. Even if toxicity to the brain develops, this does not mean that this is irreversible damage. As in any other organ system in the human body, the brain has a tolerance level, and the more the brain is exposed to drugs over years, the more irreversible the damage may be.

Q. So what is a patient to do? Patients are willing to do anything to return to their lives, to live. But the implication of a group of long-term survivors who are impaired is quite significant.

A. Yes, this appears to be a problem especially in the children’s population. We have high cure rates in some forms of leukemia – over 70 percent, 80 percent. I think it is important for oncologists and parents who guide the treatments of their loved ones to discuss that certain drugs come with brain toxicities and that these could be expected down the road so there is no surprise.

There has been an increasing awareness about long-term toxicities as a result of numerous clinical reports documenting persistent side effects in children who were treated many years earlier with chemotherapy. In the late 90ies there were a number of papers suggesting that this may also be a problem in adults, especially with prolonged survival. Now, in the past four or five years, the first scientific papers have been published to explain why this damage occurs.

Coming tomorrow: What patients want.


Journalist Susan Tifft’s “Chemo Blues”


Susan Tifft, the Eugene C. Patterson Professor of the Practice of Journalism and Public Policy Studies at Duke University, is stepping down this year. After taking a year-long academic leave to research and write a book, she had to abandon plans to return to Duke this fall when she was diagnosed with stage 4 uterine cancer. (Former Washington Post managing editor Phil Bennett will move to Duke in the fall to take over as Patterson professor of the practice.) Tifft, a longtime writer for Time magazine, is the co-author, with Alex Jones, of The Trust: The Private and Powerful Family Behind The New York Times (Little Brown, 1999), which was not only a delicious read but a finalist for the National Book Critics Circle Award in biography. Her first biography, also co-authored with Jones, was The Patriarch: The Rise and Fall of the Bingham Dynasty, a biography of the family behind the Louisville newspapers (Summit Books, 1991).

Susan Tifft and Alex Jones

Susan Tifft and Alex Jones

Duke reports that Tifft has undergone chemotherapy treatments to arrest the cancer, which had spread to her lungs. On her journal for, she documents her treatments, her emotions, her celebrations. She also rewrites a Dylan tune to describe her reaction to chemo. Here it is: 

“The Day Before Chemo Blues”

IF BOB DYLAN HAD CANCER, or ‘The Day Before Chemo Blues” (with apologies to Bob)

I feel good, I feel fine.

I’ve even had a little wine!

But them salad days are over and done.

Mass General Hospital again has won.

I got the knock-me-down, throw-me-up, I’m fixin’ to heave, day-before-chemo blues.

No more yoga, no more fun.

For the next few days it’s walk don’t run.

Phooey on rest, phooey on quiet.

I’d much prefer to stage a riot.

I got the knock-me-down, throw-me-up, I’m fixin’ to heave, day-before-chemo blues.

Food ain’t tasty, drink ain’t cool.

I stare at the wall, I start to drool.

My mind’s a fog, my brain’s a mess.

I even forget to brush with Crest.

I got the knock-me-down, throw-me-up, I’m fixin’to heave, day-before-chemo blues.

This isn’t such a woeful plight.

It’s just a week or so out of sight.

I’ll think of you, my dearest friends,

And be back to you when chemo ends.

I got the knock-me-down, throw-me-up, I’m fixin’ to heave, day-before-chemo blues. (see you soon! xo Susan)

New NCI Bulletin on chemobrain

An image of the brain showing blurred frontal regions associated with complex thought. (Courtesy Arthur Toga, UCLA)

An image of the brain showing blurred frontal regions associated with complex thought. (Courtesy Arthur Toga, UCLA)

The NCI Cancer Bulletin is a font of information (all free, by the way) for a wide array of cancer-related questions. A new post yesterday, “Delving Into Possible Mechanisms for Chemobrain,” suggests that tamoxifen, a drug used to treat breast cancer, can also disrupt cognitive functions. (Tamoxifen, which was approved by the FDA in the 1980s,  is used for breast tumors that are estrogen-receptor positive. The NCI has more information on tamoxifen here.)

Men being treated for prostate cancer are not immune either, NCI writer Eleanor Mayfield reports. Hormonal agents such as goserelin and leuprolide may also cause cognitive dysfunction.

But what is actually happening inside the brain to cause chemobrain? In other words, what is the mechanism?

Two doctors who study chemobrain intensively — one on the East Coast, one on the West Coast — are looking at that very question. Dr. Timothy Ahles at Memorial Sloan-Kettering Cancer Center in New York is crunching data and looking at the role of genetic changes. He has an additional theory, according to the NCI Bulletin: that patients with chemobrain have cells that cannot repair DNA damage caused by chemotherapy drugs.

Dr. Ahles has been focusing on genes for awhile. When he was at Dartmouth Medical School in New Hampshire, before going to Sloan-Kettering, he and colleagues conducted a preliminary study of 80 cancer survivors. They found that patients with a certain form of the gene APOE were at risk for long-term cognitive decline induced by chemotherapy. The 80 survivors, who had been treated for breast cancer or lymphoma, were given a battery of standard neuropsychological tests. Their blood was drawn and tested for the presence of the APOE gene. The study found differences in test results between those who tested positive for the gene and those who tested negative — particularly in visual memory and spatial ability. “The results of this study provide preliminary support for the hypothesis that APOE is a genetic marker for increased vulnerability to chemotherapy-induced cognitive decline,” Ahles writes in the study.

On the West Coast, Dr. Patricia Ganz, at the UCLA Jonsson Comprehensive Cancer Center, points to inflammation in the brain. Inflammation can be caused by surgery, radiation, chemotherapy or immunotherapy, and it may linger after treatment ends. Dr. Ganz is beginning a pilot study to look at strategies and tactics tht breast cancer survivors can use to combat chemobrain.

Health insurers offer a concession on pre-existing conditions

Sen. Jeff Bingaman, New Mexico Democrat

Sen. Jeff Bingaman, New Mexico Democrat

Pre-existing condition. Every cancer survivor – or parent of a cancer survivor – dreads hearing that phrase from a health insurance plan administrator. It can mean outright rejection, or it can mean being charged higher premiums for basic coverage. It means that your medical history determines, in part, what kind of rate you pay for continued coverage.

But the industry seemed to open the door to change in surprising testimony before the US Senate on March 24. In simple terms, they said they were willing to be flexible.

Karen M. Ignagni, president of America’s Health Insurance Plans, told a hearing chaired by Sen. Jeff Bingaman (D-New Mexico), that the industry is willing to give up a long-held tenet: weighing the health of an individual in setting prices. As Robert Pear of the New York Times reports, insurers have always maintained that they must base premium prices on an individual’s medical history. Insurers have argued that to do otherwise would make rates soar for younger, healthier subscribers.

This longstanding practice shackles cancer survivors who want to change jobs. It can also hamstring a family paying insurance premiums for a child who has had cancer.

As Pear reports, Ignagni uncorked a surprise for senators at the hearing. Insurers are now beginning to look at ways to prevent this type of increase, she said. They might even accept stricter regulation of premiums, benefits and underwriting practices.

In effect, insurers are willing to make this concession if Congress enacts a requirement for every American to carry health insurance – something that would presumably bring a flood of new business their way.

Ignagni said as much in a letter that she signed along with Scott Serota, president of Blue Cross-Blue Shield. If Congress requires everyone to carry insurance, they said, “we could guarantee issue of coverage with no pre-existing condition exclusions and phase out the practice of varying premiums based on health status in the individual market.”

Sen. Max Baucus, the Montana Democrat who has written a proposal for overhauling the health care system, welcomed the proposal. Pear quotes Baucus at the hearing: “It indicates that we may be able to have health care reform this year because the major players are stepping up and saying they are willing to play.”

US Sen. Max Baucus, a Montana Democrat, talks with Kathleen Sebelius, nominee for US Secretary of Health and Human Services.

US Sen. Max Baucus, a Montana Democrat, talks with Kathleen Sebelius, nominee for US Secretary of Health and Human Services.

In his “Call to Action on Health Reform,” issued in November 2008, Baucus urges just this kind of change. This is how the Baucus report puts it:

Currently, insurance companies can discriminate against older and sicker patients by charging significantly higher premiums or denying coverage altogether. Individuals with pre-existing conditions such as cancer, heart disease, and asthma are at particular risk of being denied coverage by insurance companies or being offered a policy that is unaffordable. In fact, a recent Commonwealth Fund study found that insurance companies turned down one out of every five people who applied for individual coverage due to pre-existing conditions.

While states have the authority to restrict this type of discrimination, very few have used that authority. Under the Baucus plan, insurance companies could not deny coverage to any individual nor discriminate against individuals with pre-existing conditions. Rules for rating insurance policies – which have to do with how an insurer can determine a policyholder’s premium based on various criteria such as age, tobacco use, previous illness, or factors that encourage healthy lifestyles – will be specified in statute after consultation with the National Association of Insurance Commissioners, consumer advocates, plans and others. The ability of insurance companies to rate on age would also be limited.

Mayo Clinic doctor offers insight on chemobrain


Dr. Timothy J. Moynihan, an oncologist at the famed Mayo Clinic in Minnesota, offers insights into chemobrain. His research ranges widely, and includes issues that are important to patients like quality of life and fatigue, and pain management. (A list of PubMed abstracts of his research papers can be found here.) He took time out of a busy schedule to do a Q&A with us.

Q. It seems like more and more clinicians are accepting “chemobrain” as something real. Yet many patients seem reluctant to talk about it. How should a patient approach their doctor if they believe they have “chemobrain” and he or she is not familiar with it?

A. I think more and more oncologists are aware that some proportion of people undergoing chemotherapy and or radiation therapy have some cognitive difficulties, that may be long term. The exact causes of these problems, the mechanism by which they are caused, the prevalence of these and how these can best be treated are the major areas of uncertainty. It is clear that not all patients experience these side effects. Why some and not others? Is it due to the underlying cancer, the treatment, other factors? So many things need to be discovered. So, if a patient is experiencing symptoms, he or she should just mention it to their physician. If the physician is not familiar with these neuro-cognitive changes, then requesting a referral to someone who has an interest, often at an academic medical center, is quite reasonable thing to request. This certainly may help to recruit patients for more studies of these side effects so we can understand what is occurring.

Q. What is your thinking about the potential cause of “chemobrain”?

A. I think this needs to be determined. Is it cytokine release from the tumor? Oxidative stress from the chemo? DNA or other chemotherapy damage? I do not think anyone is quite sure what the cause is at this point in time.

Q. Some patients have found relief by taking mild stimulants, such as modafinil. Do you recommend this course of action for any of your patients?

A. Ongoing trials are looking at things such as psycho stimulants. Certainly several trials have suggested some improvement in symptoms with these drugs. In patients who are really adversely effected by these symptoms it is something that we discuss and try to weigh the risks and benefits.

Diane Blum, Part 2: Health care reform and the financial impact of cancer

Kathleen Sebelius, new secretary of Health and Human Services, and Nancy-Ann DeParle, new head of the White House Office For Health Reform

Kathleen Sebelius, new secretary of Health and Human Services, and Nancy-Ann DeParle, new head of the White House Office For Health Reform

Here is part 2 of an interview with Diane Blum, executive director of CancerCare in New York.

Q. What are your views of health care reform? What would you like to see done?
A. Policy is not my expertise, my expertise is really in directing an organization that provides service. I unequivocally understand, as do all of my colleagues here, that we have to address this issue of health care from the point of view of cancer, which is really the only thing I have expertise in. You’re going to have more people getting cancer, because cancer is a disease of people as they age, and we have an aging population. You’re going to have more people living longer, which is definitely a plus, but the window of need extends. And you also are curing more people who have all of these post-treatment issues which need to be addressed.

ccQ. What kind of post-treatment psychosocial needs do you see coming to the fore?
A. Well, from the psychosocial point of view you certainly have the issues of how people are coping after a diagnosis of cancer. It isn’t just a matter of waiting for your counts to come back, it takes awhile to rebound emotionally, financially and socially from a diagnosis of cancer. There are many people who have great anxiety when they are in treatment and who might have changed their roles in their family and are now expected to go back to what their previous role was. There are people who want to switch jobs who wonder how much to disclose about a cancer diagnosis, there are people who are embarking on new relationships. The good news is that people are finishing treament and hopefully going to do well. The bad news is that these are real issues that we know now need attention.

You also have all the societal issues. Yes, you must be able to get health care but a lot of people have to buy it at a price they can’t afford. People who have had cancer can’t get life insurance. There are all of these very kinds of practical issues that we didn’t think about a whole lot 20 years ago because your only goal was getting somebody to finish their treatment and ideally be cured. Now that there is a larger number of people in that group, we really have to pay attention to that. But all of these things are going to add to cost, there is no question of that.

We have incredible access to information. People are really encouraged to be more participatory, to learn more. So you have a lot of interest from people in more interventions and different kinds of tests. It is not sustainable. So something has to give. I don’t think that expensive cancer drugs are going to be the first thing that is going to be dealt with. Again, from a societal point of view, we have moved already to provide more health insurance to children. I think they’ll probably be addressing the needs of the uninsured. I think there might be some expansion of Medicare to a younger age if people lose their work. I don’t think expensive cancer drugs are going to be number one on the list.

I think we’re going to see more pressure to use those drugs in a more effective way. There is $1 billion in the stimulus bill for comparative effectiveness study. They’re not easy to do, but I’m going to a meeting at the end of April on comparative effectiveness, and all of a sudden there is all this talk about comparative effectiveness.

If you take the long view, these things all have some impact as we move forward, but I would say that the system as it stands is not sustainable from a consumer point of view, from an employer point of view, from an insurer point of view, something has to give. How is that going to happen? What is it going to take? What is the outcome going to be?

Q. You have funding available for young people 18 and under. Young survivors are very frustrated that there is so little for them.
A. It’s not to have cancer at any age. But if you are 50 or 60 or 70, you have more of a peer group who has cancer. You have more life experience, you’re at a different point in your life. For young adults it is very isolating. It is very difficult. They are at a point in their lives where so much can be interrupted. Their career choice, their social choices, their school choice. We have a social worker who does some wonderful programming.

Q. Any final points that you’d like to stress?
A. I feel good that for years we have been talking about the financial impact of cancer and we have been trying to address it. And now it is being recognized much more widely. Not that that makes the impact any less, but it is gratifying to think that we have addressed this when many people were not paying much attention to it. I’m sorry it took a crisis to get there.

Help with drug costs: $15m CancerCare program covers six cancer diagnoses

blumFor 65 years, CancerCare in New York has been devoted to helping cancer patients, survivors, and their families. The group offers a full menu of services, from free telephone conferences to web chats with social workers. Last year, CancerCare introduced a foundation to help patients with drug co-pays. The $15 million co-pay assistance foundation is “going well,” executive director Diane Blum says, and covers six different cancer diagnoses.

In our telephone interview, Blum discussed a wide range of issues that affect cancer patients and survivors. She notes that there is good news – more people are living long lives after diagnosis and treatment. But that has created a host of post-treatment issues that require support.

Blum, who became executive director of CancerCare in 1990, has an extensive background in social service work. She served as a social work supervisor at Memorial Sloan Kettering Cancer Center in New York City and the Dana-Farber Cancer Institute in Boston. She is co-founder of the National Alliance of Breast Cancer Organizations and editor-in-chief of, the ASCO website for patients and the public.

Here is a Q&A with Blum. I will post half today and half tomorrow.

Q. I’m interested in the work CancerCare is doing on its financial assistance program. What prompted it, and how long it has been going on?

A. It has been going on a very long time. CancerCare was founded 65 years ago, with a dual mission, and that was to provide counseling to families who were caring for someone who at that point was dying from cancer. The mission was just focused on people with end of life issues and also to provide financial assistance to those families.

So over the 65 years, that mission has been expanded to include people at all stages of diagnosis so we help people from new diagnosis now through end of life care as well as bereavement for their caregivers.

But financial assistance has been maintained as an integral part of what we do. We have a long, long track record of being able to provide money to people to meet unmet needs.

Q. Has that need expanded recently?

A. Yes, I mean there has always been a need, we have never had enough money, it is an infinite problem and we’re a private organization offering a service when many people would benefit of a more societal approach to problems than we’re able to offer, but we’re very committed to it for a whole variety of reasons. But we certainly have seen an increase, probably I would say since last summer, in the last 7 or 8 months, we saw a big increase in financial need last summer with the enormous jump in gas prices, because a lot of people come to us for help with their transportation costs to get to treatment. That diminished a bit as the price of oil came down, but it has been more than replaced by the economic crisis, which results in more people being unemployed, more people who no longer have health insurance, more people who are working but either can’t pay the premiums that their employer requires or their employer no longer offers health insurance because the cost has become prohibitive for the employer.

And just the decrease in discretionary income that people feel because there has been this stress on everything. Whether you’re out of work or whether your savings have decreased, or you’re worried about paying your mortgage or whether you’re living on a fixed income and the cost of food has gone up for you. I could go on and on and on. But it’s across the board. So because we very much live in the real world, we hear all of that now.

Q. Let’s take a hypothetical. How would you provide help for a patient with drug costs? In cancer, there are drugs that are super-specialized and very expensive.

A. We actually a year ago established a co-pay assistance foundation. We did that because we had the six decades of experience of providing financial assistance and we were hearing from more and more people who could not afford the co-pay that their expensive cancer drug required. And co-pays are the result of more insurance companies moving these specialty drugs into a separate tier. Where you might typically have a $25 or $50 co-pay, with these specialty drugs the co-pay is a fixed amount but is a percentage of the drugs. So we established a co-pay foundation last spring. We’re just about to finish a year with it.

Q. How is the program going?

A. It is actually going very well, it is a complement to our traditional services and it is meeting a real need. There we give people larger amounts of money because drugs are so expensive. You can meet a transportation need with a smaller amount of money. The need for a drug that costs $8,000 a month is harder to meet with a smaller amount of money.

We cover at the moment six different diagnoses: lung, colon, breast, prostate, head and neck and pancreas.

So if you have problems with a co-pay for any drug you’re getting for breast cancer, we can help you.

At this point we’re not providing funding for any of the blood cancers, which we would like to do at some point. And we also are not providing funding for gynecological cancers, which actually don’t have a whole lot of expensive drugs attached to them.

We’re very pleased that we made the decision to do this. It is meeting a need. But health care is in such incredible turmoil, and under the spotlight. We are a private organization operating CancerCare on a $20 million budget and the co-pay foundation on about a $15 million budget. So we’re a reasonable size with the two organizations put together, but again these are societal problems that we can’t solve alone.

TOMORROW: Post-treatment needs, and health care reform.


Justice Ruth Bader Ginsburg to undergo chemotherapy


U.S. Supreme Court Justice Ruth Bader Ginsburg, who had surgery last month for pancreatic cancer, plans to undergo a “precautionary” course of chemotherapy.

Remarkably, the 76-year-old justice hasn’t missed any of the court’s public sessions. She underwent surgery Feb. 5 for a 1 cm tumor on her pancreas. Her cancer was Stage 1, which meant it had not spread beyond the original site.

The round of chemo, which will be administered at the National Institutes of Health, is scheduled to start later in March.

“Thereafter, it is anticipated that I will require only routine examinations to assure my continuing good health,” Ginsburg, a colon cancer survivor, told reporters. She said the surgery was “complete” and “successful.”

When Ginsburg spoke last week to students at New England Law School in Boston, she told them   she had received advice about chemotherapy from former Justice Sandra Day O’Connor, a breast cancer survivor.

“She said when you’re up to chemotherapy, you do it on Friday, Friday afternoon,” Ginsburg said, according to the Associated Press. “You’ll get over it over the weekend and you’ll be able to come to the court on Monday.”

‘Genius pill’ addictive, study finds


This image, from a 2007 article in Time magazine, accompanied a short piece about Provigil, the so-called genius pill. Time put the pill on its list of scariest moments in science.

The up-all-night drug has certainly caught on among students and professionals who want to sharpen their thinking or spend a few additional hours working. I know of colleagues who have used it to handle overseas assignments in distant time zones, to no apparent ill effect.

Now, a small study cautions that the drug could prove addictive. Researchers writing in the Journal of the American Medical Association found that the drug, developed 10 years ago by Cephalon, increases the level of dopamine in the region of the brain involved in feelings of pleasure and reward. Ten healthy volunteers took the drug, then submitted to a PET scan that showed brain activity.

The increase of dopamine is “the signature for drugs that have the potential for producing addiction,” said Nora Volkow, lead author of the study and director of the National Institute on Drug Abuse, told Bloomberg News reporter Marilyn Chases.

Physicians prescribing Provigil should “be alert to the possibility that it could produce addiction,” Volkow said, and the drug “may have more abuse potential than originally believed.”

How is this relevant to our ongoing examination of chemobrain? Provigil, or modafinil, is sometimes prescribed for patients suffering chemobrain symptoms. In interviews, some patients said it helped them function at work. One researcher at Mayo Clinic in Rochester, Minnesota, is optimistic that modafinil can help patients cope with chemobrain. Dr. Sadhna Kohli, a PhD-MPH who was an assistant professor in Rochester, NY, before she went to Mayo, analyzed surveys of 595 patients with various kinds of cancers who were treated in 2001 and 2002. She found that 82 percent of patients who were receiving chemotherapy for cancer experienced symptoms such as forgetfulness, an inability to concentrate or complete thoughts, or had a sense of fogginess that impaired their ability to reason and remember.

Sound familiar?

Kohli also tested the effects of modafinil in 68 breast cancer survivors over an eight-week period. During the first four weeks of the clinical trial, all 68 women took the drug. For the next four weeks, half continued taking modafinil, and the other half took a placebo pill. Kohli found a significant difference between the two groups. Although the study began as an examination of fatigue, Kohli and her colleagues at the James P. Wilmot Cancer Center in Rochester, NY, did a secondary sweep to look at cognitive function. She found that breast cancer survivors taking modafinil reported improved memory, concentration, and ability to learn.

Does she believe chemobrain is real? “If you talk to patients in the clinic,” she told me in a telephone interview for “ChemoBrain,” “then definitely, I do. Before, they were not being taken seriously. It used to be so subtle in terms of memory and concentration, that physicians didn’t know exactly what it was. But more and more women were complaining of it. We’re going to step back [and look at] what causes chemobrain. We need to know what is going on in the brain.”
She reports that one patient was willing to pay $750 a month out of pocket to get modafinil off label. The pill changed her life, she said.

But any off-label drug use needs to be approached carefully. One physician I talked to said it can be hard for patients to find doctors willing to prescribe stimulants like Focalin and modafinil off label. He viewed off-label prescription as something more apt to be done by an older, more experienced physician.

Cephalon, based in Pennsylvania, also revealed that it is developing a longer-acting version of Provigil for release in late 2009. The new drug, known as Nuvigil, or armodafinil, improved the depressive cycle in bipolar disorder when combined with other drugs, according to a study done by Cephalon.

And, for its part, Cephalon begged to differ with the study results obtained by the drug abuse institute. The chief scientific officer, Jeffry Vaught, told Bloomberg that Provigil’s effect on dopamine is “weak,” and that it is “very different from amphetamines and its abuse potential is very low.”

Scans may give faster answers on chemo

Researchers are exploring a way to peek inside the body of a patient undergoing chemotherapy to see if the treatment is working. Two small but provocative studies looked at the ability of a specialized PET scan to show what a tumor is doing. (PET is an acronym for positron emission tomography, a three dimensional scan common in most hospitals. Patients are injected with a radioactive substance, and the scan “lights up” in active areas. Standard PET scans look for blood sugar consumption.)

A new radioactive substance called fluorothymidine is even more precise: it shows whether cancer cells are dividing. According to Malcolm Ritter, an Associated Press science writer, two studies of patients in Korea and in Wisconsin enabled doctors to see whether tumors were responding to chemotherapy as soon as a day after treatment started.

As Ritter writes:

The hope is that, over time, FLT PET would prove reliable for giving a faster answer on whether an experimental treatment is working. That would save [drug] companies a lot of money, because they could spot ineffective drugs more quickly and not wast further research on them. And the drug company research would produce data to help persuade federal regulators to approve FLT PET for use in tracking therapy.

Lymphoma patients, in particular, are used to getting scans to assess whether their treatments are working. This new technology could provide faster answers for people getting chemo for other kinds of tumors. But it may take time, and larger studies, to change policy so that this “early look” is paid for under Medicaid and Medicare.

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