Taking Control

I’ve mentioned before how much I enjoy PostSecret. This is a site that posts anonymous postcards containing about a secret about the writer. Today’s update had this postcard:

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This card reminded me of a topic that comes up with almost every new patient I see. I am inevitably asked, “When will my child’s hair fall out?” Both parents and children usually ask what they should do about it. Like I discussed in July, I always refer them to our Image Recovery Center, where they can learn techniques for maintaining a healthy self-image from cancer survivors.

But do you know what most of my adolescent and young adult patients do? Not only do they visit the Image Recovery Center, but in an effort to maintain some control over their body, they cut their hair short or shave it off altogether! What a healthy response to knowing your treatment will rob you of your hair. Taking control of whatever can be controlled is important. Feeling in control is so much better than feeling out of control – whether you are being treated for cancer or jumping out of an airplane.


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A new old remedy for nausea

I am often asked my opinions about herbal remedies. Patients seem more attuned than ever to alternative therapies, but many still want a physician’s opinion about what does and does not work.

Giving an educated opinion is often a challenge, because rarely are herbal remedies tested in traditional medical trials. With the introduction of the National Center for Complementary and Alternative Medicine, a part of the National Institutes of Health, this was supposed to change. Slowly, but surely, it is.

Last week, in advance of the upcoming meeting of the American Society for Clinical Oncology, results from a number of studies scheduled to be presented were released to the public. One of these was designed to test whether ginger, a traditional folk remedy for nausea, can help with the nausea produced by chemotherapy.

No one suggested that ginger alone was sufficient, but instead, patients were who experienced chemotherapy-induced nausea were randomly assigned to one of four groups: 1) treatment with their regular anti-nausea drug alone, 2) treatment with their regular anti-nausea drug plus 0.5g ginger, 3) treatment with their regular anti-nausea drug plus 1.0g ginger, or 4) treatment with their regular anti-nausea drug plus 1.5g ginger. The ginger was administered in the form of a capsule containing ginger extract, and neither the patients nor their doctors knew who was in what group. Patients reported their daily nausea on a 7 point scale. A total of 664 patients were treated, 90% women, 66% with breast cancer. All doses of ginger significantly reduced the nausea patients experienced while receiving chemotherapy. You can read the original abstract here.

So what does this mean? Ginger may interfere with blood clotting, so patients should still consult with their doctors prior to adding this to their routine, but on the whole ginger is safe and effective. And if the form doesn’t matter (something not tested in this trial), imagine how easy it would be to convince patients to add ginger in the form of ginger ale or cookies! Of course, not all ginger ale contains actual ginger – and artificial ginger flavoring is unlikely to be a good substitute.

What else does it mean? I think it reinforces something I tell all of my patients who ask about herbal remedies. Some work, some don’t. The ones that work should withstand the sort of testing we do for other medical treatments, including the “gold standard,” a double-blind, placebo-controlled study. Just like this one. Ginger passed the test.

I’m going to go make my patients some ginger snaps!

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A Musical Wish

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It’s been a good week for Mike.

Mike is a patient of mine. Yes, this is his real name. He’s been telling me for a while that I need to blog about him.

I met Mike just after Christmas. He had been dealing with a stuffy nose all winter, and despite repeated trips to the doctor and courses of antibiotics, it didn’t seem to get better. Finally, a CT scan showed not a sinus infection, but a large tumor. Mike was diagnosed with rhabdomyosarcoma the weekend after Christmas. What a present!

Mike is a really cool kid. He plays guitar. No... I play guitar. Mike performs and makes records. In fact, when we told him he would have to get some of his chemotherapy as an inpatient, his first question was whether he was allowed to bring his guitar with him. I’ll never forget the concert he put on in his room during his second cycle of chemo.




This is a video of Mike’s band Monday’s Riot. Mike is the one with long hair singing and playing guitar.

Mike also has a band called The Grenaders, and you can hear their music here. Download whatever you want. Mike strongly believes all music should be free.

So why has this been a good week for Mike? Well, today Dr. Fernanda Arnaldez and I, who take care of Mike together, had the pleasure of showing him his MRI from last week (after 13 weeks of chemotherapy). There is no sign of his tumor anymore! He was giddy with excitement when he saw the size of his tumor in December and then how normal his scan is today.

Almost as exciting as that was the phone call he received earlier this week. Make-a-Wish came through for him. Mike’s wish was to have someone special produce and album for him. An album of his music. Mike made a wish and the wish is coming true. Todd Rundgren is going to produce his album!

It sure has been a very good week for Mike.

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Is The Medical Community Complicit?

Gina Kolata wrote a fascinating piece this week on the subject of The War on Cancer, first declared by President Richard Nixon back in 1971. The main focus of her article is how elusive a “cure” is turning out to be, and how expensive the search has become.

As she points out, over the past 50 years the age-adjusted death rate from cancer has fallen a mere 5%, despite the federal government having spent well over $100 billion on cancer research. Details of cancer research funding can be found here.

What really caught my attention, though, was not the fact that a “cure for cancer” is so elusive, but rather her acknowledgement that the public believes that cancer is almost always preventable, and that failing prevention, if caught early enough it is almost always curable.

To some extent, these ideas are true. Quitting smoking clearly decreases a person’s risk of developing lung cancer. But does this mean all lung cancer is preventable? No. As discussed in this recent article in the Journal of Clinical Oncology, 10% of lung cancer patients in the US have never smoked a cigarette. Lung cancer in never smokers (LCINS) is a distinct entity, with its own epidemiology, risk factors, molecular biology, and treatment outcomes. A focus on cigarettes as the major cause of lung cancer is appropriate, because 90% of lung cancer is smoking-related, and lung cancer remains one of the most common types of cancer in the US (lung cancer causes more deaths in women than breast cancer), but by focusing on smoking almost exclusively, are we complicit in making the public believe that all lung cancer is preventable?

Numerous other interventions have been proposed to decrease the risk of cancer, including low fat diets, high fiber diets, the use of antioxidants, taking vitamins – but rigorous testing has rarely shown a benefit to these lifestyle changes when it comes to cancer.

What about early detection? Localized cancer is clearly easier to treat than metastatic cancer, and some cancers are readily detected by screening (including breast cancer, colon cancer, and prostate cancer). However, some types of cancer, such as pancreatic and ovarian cancer, remain difficult if not impossible to detect by a screening program.

Does early detection by screening actually save lives? On the surface, it seems the answer would have to be “Yes.” But in reality, not every screening program saves lives. Two very recently published articles failed to demonstrate a decrease in prostate cancer-related death in men randomized to an intensive screening program compared with “usual care.”

How is this possible? The benefit to screening and early detection of cancer is based on the idea that cancer progresses in an orderly fashion from a pre-cancerous lesion to a localized tumor and finally to metastatic disease.

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If a pre-cancerous lesion or a localized tumor is detected on a screening test and treatment is begun immediately, the belief is that metastatic disease can be prevented and lives will be saved. But what if some cancers are more aggressive than others and have already spread when the primary tumor is detected? Early detection of cancers like this will not change the disease-specific death rate (the death rate attributed specifically to cancer) because metastatic disease, which is what usually kills patients, will not be prevented from developing. What if the tumor that is detected is one that grows slowly and only rarely kills? Finding a tumor like this early may not save lives.

So does that mean screening programs don’t work? Not at all. But it does mean that such programs need to be rigorously tested. The introduction of Pap smears has had a profound impact on death from cervical cancer. Screening programs for breast and colon cancer have been shown to decrease cancer-related death from these diseases. However, screening for prostate cancer may not. Prostate cancer is a slow growing disease, and most tumors picked up by screening tests are small enough that they do not need to be treated – men with these tumors are more likely to die of something else (a heart attack or a stroke) rather than dying of prostate cancer. So finding this tumor early does not save lives. As future screening tests become available, they will need to be tested carefully to determine whether or not they should be widely applied.

What does all this mean? I think it means we as a medical community need to be very careful in how we discuss concepts like screening, prevention, and even treatment. Words are powerful. We need to choose ours carefully. We need to avoid complicity in misleading the public into believing that if they just eat right, exercise, and submit to a variety of screening procedures, they won’t die from cancer.

As Ms. Kolata also points out, “Research lurches from fad to fad — cancer viruses, immunology, genomics. Advocacy groups have lobbied and directed research in ways that have not always advanced science.”

Those of us involved in cancer research must continue to carry the fight forward, guided by science, so that one day cancer will be no more feared than high blood pressure.

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It's Been A While

It's been a while since I've been able to post. There are numerous reasons, too many to list here. Life is like that sometimes. Grant deadlines come and go, manuscripts need to be written, patients need to be cared for, and of course my family needs me as well.

Sometimes, I think, people need to be reminded why we do what we do. Please watch this video. This is why I do what I do.



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A Bright New Day for Stem Cell Research – Undoing Bad Policy

The “Breaking News” alert came to my phone last night: on Monday, President Obama is planning to sign an executive order reversing the restrictions on embryonic stem cell research put in place by President Bush in 2001. This comes as a surprise to no one, as Obama made it clear that he was opposed to these restrictions throughout the 2008 presidential campaign.

The occasion of this reversal of federal policy seems to be a good time to talk a bit about stem cells. The President’s decision is sure to provoke intense debate, and this debate can only be healthy if it is based on fact, not emotion.

Let’s start with the basics. What is a stem cell?

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As I discussed in a prior post, a stem cell is a primitive cell that is capable of generating more “daughter” cells with more specific function as well as making more copies of themselves. Every organ and tissue in your body contains stem cells. As the most mature cells die, they are replaced by cells derived from these “organ stem cells,” which also continuously replenish themselves. Stem cells such as these are often referred to as “adult stem cells” because they are found in adult humans. There are also “umbilical cord stem cells” which are found in the blood in the umbilical cords of newborn babies and many oncologists believe that there are “cancer stem cells” that drive the growth and spread (“metastasis”) of tumors.

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The controversial cells are called “embryonic stem cells” because they are derived not from adults but from human embryos. In the process of obtaining embryonic stem cells, the embryo is destroyed.

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Why all the excitement about stem cells? Because stem cells are so primitive, and their job in the body is to produce cells with a more specific function, it is believed that stem cells can be coaxed into producing virtually any other tissue type. This means that the therapeutic implications of stem cell biology are limitless.

Doctors could grow new organs to replace defective ones, and if they used the patient’s own stem cells, there would be no need to take medicines to prevent rejection. Diabetics could get a new pancreas that works instead of injecting themselves with insulin. Patients with spinal cord injuries could walk again.

So why the controversy?

Arguments about the ethics of stem cell research arise from questions about the source of the stem cells. Although “adult” stem cells can be obtained from an adult person, who can give informed consent for the procedure and who will (most likely) not be harmed by the procedure, embryonic stem cells require the destruction of an embryo. Those who believe an embryo is a human life entitled to the same protections as a child or adult argue that this amounts to murder and believe that it is unethical to murder an embryo to help treat disease in an adult.

Opponents of embryonic stem cell research believe that adult stem cells provide appropriate material for study and should be the sole focus of stem cell research.

Do they have a valid point? Maybe, but maybe not. So-called “adult stem cells” are not as primitive as embryonic stem cells. They already have some characteristics of the organ from which they are derived (liver, kidney, bone marrow…). So to make them turn into a different tissue is more complicated and more difficult. These “adult stem cells” have to first lose the characteristics of the tissue they came from and then gain the characteristics of the tissue they are being turned into. So far, doctors have been unable to accomplish this task on a large scale. Embryonic stem cells, because they are the most primitive stem cells available, should be easier to turn into the tissue of choice.

Since 2001, federally funded scientists have been forbidden to work with embryonic stem cells that were not already in existence. This has significantly limited progress in developing stem cell-based therapies. Despite this, the ban has not been all bad. As with all clouds, there was a silver lining. The limitations imposed by President Bush forced scientists to be creative. One novel source of stem cells that may not have been developed otherwise, is called “induced pluripotent stem cells,” abbreviated iPS. These are cells that do not start as stem cells but are manipulated in the lab to act like stem cells. Many scientists are as excited about the potential of iPS as they are about other stem cell types.

Clearly this is a very complex topic, and I have oversimplified a lot. The bottom line is that I am excited that the order President Obama is signing will not only open the door to new stem cell research, but may also signal a new era in science policy – an era where scientific decisions are made based on science, rather than on ideology.

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Why Does My Child Need a Flu Shot?

It’s official – we are in the middle of flu season. According to the Centers for Disease Control (CDC), the percentage of flu tests that came back positive during the week ending February 21 (the most recent time period for which we have data) continues to rise steadily and has not yet peaked.

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For most people, influenza is just a nuisance infection. If you get the flu, you have a fever, stuffy nose, and body aches. You rest in bed for a few days, and when it’s over, you’re back to normal. For children, the elderly, and people with underlying medical problems, however, influenza can be a life threatening infection. So far this year, influenza has caused 17 deaths among children in the US. Eight of these deaths occurred just last week! As reported by CNN this week, even perfectly healthy children die of influenza. It is because influenza can kill children even if they have no other medical problems that this year New Jersey began requiring flu shots for children to be allowed to attend preschools and day care centers.

Perhaps even bigger flu-related news, though, came in a pair of articles published this week in the Journal of the American Medical Association (JAMA). Unlike most viral illnesses, there are actually effective drugs to treat influenza. One of these, oseltamivir (Tamiflu®) is FDA-approved to reduce the duration of symptoms if taken within 48 hours of feeling sick. An older drug, Amantadine, is no longer useful for the treatment of influenza because more than 90% of the circulating influenza A viruses are resistant. Because of the way Tamiflu was designed, many physicians and pharmacologists believed widespread resistance to this drug was not possible. Unfortunately, this is not the case. Although in the 2007-2008 flu season only 12.3% of influenza isolates were resistant to oseltamivir, preliminary results from this year (reported in this week’s issue of JAMA) indicate that 98.5% of isolates are resistant! Once again, nature is outsmarting us and drugs that used to be effective for treating infections are becoming useless.

So if we can’t treat the flu, the best thing we can do is prevent the flu. And the only way to prevent the flu is with a flu shot. Who needs a flu shot? According to the Advisory Committee on Immunization Practices (ACIP), all children between the ages of 6 months and 18 years should be vaccinated, as should adults 50 years of age and older and any adult at risk for medical complications from influenza. The recommendation to vaccinate all children arises from concerns that even otherwise healthy children can die of influenza, a concern that sadly is born out year after year in children whose parents asked, “Why does my child need a flu shot?”

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Pay It Forward

I got a wonderful email the other day from the mother of a patient of mine, Kelly. She wrote to tell me not only how well her daughter is doing now, but that she is planning a benefit concert to raise money for some of the doctors at Hopkins who helped her daughter. In her words, “since I can never actually "repay" any of you, it is my deepest hope that I can somehow pay it forward.”

With her permission, I want to tell you Kelly’s story. My sincere hope is that someone with a child who is very sick will read this story, see the pictures, and feel some hope that their child, too, can come through it and do well.

Kelly came to Johns Hopkins when she was 11 for treatment of an unclear disorder of her immune system that had not responded to numerous therapies over the previous 2 years. The immunologist who saw her at Hopkins thought she might benefit from a novel treatment we have developed using high doses of a chemotherapy drug called cyclophosphamide (Cytoxan) to essentially “reboot” the immune system in patients who have severe autoimmune diseases (an autoimmune disease is a condition where the patient’s immune system attacks the patient’s own body as if it were an infection).

Twenty-one days after being admitted to the hospital for evaluation, Kelly was treated with high dose Cytoxan. This treatment initially made a very sick child even worse. She had blood infections. She needed transfusions. She couldn’t eat and needed a tube for feeding.


But then she got better.

It was slow at first, and when she was discharged from the hospital after 48 long days, Kelly was still being fed through a tube. But she was able to stop antibiotics, slowly decrease her pain medications, and eventually eat again. Two weeks after discharge from the hospital, Kelly was well enough to return home to California. She has continued to improve dramatically, and I’ve had the pleasure of watching her progress in photos her mother has sent me… first, wearing a bikini on the beach in Malibu, and most recently playing with the animals at the fair.



Kelly now eats a regular diet, her feeding tube is gone, she goes to school with her friends, and you could never tell by looking at her that she was ever so sick. Her story continues to inspire me. Children like Kelly, who endure so much, and emerge looking as if nothing had ever happened, are the reason I do what I do. And if her mother can “Pay it forward” and make this concert happen, I’ll be there dancing in the aisles with her.

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Is Cancer Contagious?

This question actually comes up a lot in my practice.

When a family is first coming to terms with a cancer diagnosis, so many questions pass through their minds. Does it run in families? Do my other kids need to be checked? Is it contagious?

In humans, the answer is “No,” although now that we know cervical cancer is usually caused by Human Papilloma Virus (HPV; a sexually transmitted infection) this answer is a bit fuzzy. Although viruses like HPV that can cause cancer are contagious, cancer itself is not.

But is that true for all animals? Apparently not. Recently I came across this fascinating article about one of my favorite animals from childhood: The Tasmanian Devil.



When not chasing Bugs Bunny, Tasmanian Devils live in, well… Tasmania. They are marsupials, carrying their young in pouches like a kangaroo or opossum. They are the largest carnivorous marsupial to escape extinction.

Sadly, though, over the last decade, the population has crashed. In some areas by as much as 90%. The cause? Cancer. A cancer that is contagious!

How does that happen? The cancer, known as Devil Facial Tumor Disease, causes a tumor on the face of the Tasmanian Devil, and when an animal with such a tumor bites another Devil (which isn’t a rare event, as you might imagine), the cancer cells are transmitted to the victim and grow into a tumor. The tumor makes it hard for the animal to feed, so it starves.

Why doesn’t the animal’s immune system protect it against the cancer? In most other species, if you inject cells from one animal into another, the recipient’s immune system destroys them. That’s why organ transplants don’t work without strong immune suppressive medications. This immune defense is based on differences in a set of genes called MHC genes that are so variable that (for the most part) only identical twins share the exact same gene sequences. This holds for humans, dogs, cats, mice, monkeys, kangaroos… almost every animal.

Except, apparently, the Tasmanian Devil. Tasmanian Devil MHC genes are not very diverse, and this allows the cancer cells to evade the immune system and grow.

But the mystery does not end there. There are other animals with very little MHC diversity, like cheetahs and beavers, but they don’t have contagious cancer. Also, Devil Facial Tumor Disease is new, first spotted in 1996. This suggests that the situation is more complex than it would seem on the surface, and raises the possibility that the cancer cells have evolved in ways that make them more transmissible.

How? No one knows. It’s just one more of the many unsolved mysteries surrounding cancer and the immune system.

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Oh, by the way...

These four words, just at the end of an appointment, usually are prelude to something of tremendous importance that the patient has spent most of the preceding hours trying to decide how to talk about.

Today I saw a 23 year old young man with relapsed metastatic osteosarcoma. He has already been treated with all five of the chemotherapy drugs that we know typically work against osteosarcoma. We looked hard, but there are no open Phase II clinical trials for which he is eligible. After much discussion and many emails, we decided on a low dose chemotherapy regimen in combination with another drug that we hope will help the chemo work better.

After reviewing the treatment plan and all of the potential side effects, the patient signed informed consent and we made plans for follow-up, including blood tests to monitor for side effects.

“Oh, by the way…”

This is when the patient told me he was hoping to hook his boat up to the back of his van and drive out west with a friend.

My initial reaction was… fear. I had just laid out a treatment plan with a long list of side effects. Without prompt medical attention, some of these side effects could be fatal. How was I going to tell this young man that he can’t go camping in the middle of nowhere while taking these medications? What if he went anyway, and something horrible happened to him? Something that could have been prevented had he stayed locally?

Should I let him go, or try to talk him out of it?

It didn’t take me long to decide he should go on his trip. His prognosis is poor, even if this treatment helps. At the moment, he is in good condition and will really enjoy his trip. As long as he fully understands the consequences of his decision, he should live as full a life as he can for as long as he can.

I just hope he has a safe trip and a great time.