Chemotherapy

After a terribly painful and debilitating illness, Steve died.  He had been treated for Stage 2 Hodgkin’s Disease with a series of intense therapies including German enzymes, American antineoplastins, Mexican naturopathy and Chinese Herbs, complemented by focused meditation, innumerable vitamins, extreme diet modification and acupuncture for severe pain.  He fought the cancer with every ounce of his being, doing everything to survive, except the one thing that had an 85% chance of cure; chemotherapy.

I was struck this week by a comment on my website, which bemoaned the highly disorganized state of “alternative medicine” in this Country and in particular the “paltry sums” for alternative research funding by the National Institutes of Health (NIH). The writer suggested that not only could the quality of health be improved with alternative medicine studies, but would go a long way towards saving health care dollars.

It seems to me that the idea that we need more Complementary and Alternative Medicine (CAM) research goes right to the core of the confusion between so called “conventional medicine” and CAM.  There is a major difference between the medicine practiced by board certified, classically trained physicians and that of alternative practitioners.  That difference is research and data.

If an MD or DO is treating a cancer patient and that patient asks to see or understand the basic science and clinical studies which support the recommended therapy, that published data is readily available. Standard oncology treatment goes through 10-20 years of research, from the test tube, animal studies and through a series of supervised human multi-phase trials, until it is approved and offered to patients. Each step is refereed by competing and critical PhD and physician scientists and must be published in peer-edited journals for general review and criticism, all of which is public and transparent. Where it is not, and when people attempt to manipulate or falsify the system or data, massive blowback eventually occurs.

Continue reading “Choosing Alternative Medicine”

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Here is a little appreciated fact: Patients cannot order medical care; they can only accept or refuse it.

Only a doctor can order medical treatment.  In an extreme medical situation, the doctor can offer CPR, but it is the patient’s job to accept or reject.

Any patient can refuse CPR.  This refusal is known as Do Not Resuscitate or DNR, and for obvious reasons needs to be made ahead of time. The question is, when is making the decision to be DNR appropriate?

A further definition is needed.  DNR (and its colleague, Do Not Intubate, DNI) is not the same as DNT, or Do Not Treat.  A patient, at their discretion, may receive maximal medical care, including drugs, dialysis and surgery, and still be DNR.  The DNR order in that situation is simply a line that the patient will not allow the doctors to cross.  “Do everything you can to help me, but if it fails I do not want to end my life on a machine or with some gorilla pounding on my chest.”

On the other hand, a DNR can be a part of a hospice or palliative care program, so that all care is focused on comfort and not treatment.  It is even possible, in very unusual circumstances, to receive hospice care without being DNR.  A DNR order is like any medical decision, it can be changed if appropriate.  DNR is not the same as “pulling the plug.”

How aggressive to be in receiving medical care is a personal decision.  In order to make certain that our individual desires are followed it is critical that, as much as possible, these decisions be made ahead of time.  This avoids panic, confusion, and guilt.  In that spirit, let us review a few cases.

Ben is a 54-year-old gentleman with lung cancer, which has spread to bones and liver and is growing despite the third chemotherapy.  His doctors inform him that a fourth chemotherapy has a 5% chance of helping him and a 20% chance of killing him.  He wants to try the chemo.  His physician says, “OK Ben, we will order the chemo but if things fall apart and your body starts to fail and we cannot fix it, do you want to be put on a machine?”  Do you think Ben should make himself DNR?

Ben made himself DNR.  He survived the chemo, but the cancer progressed and he died one month later.

Continue reading “To DNR or Not to DNR”

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I have a close friend who is looking for treatment for a “bleomycin lung injury” to a close family member. Bleomycin is one of the chemicals included in chemotherapy treatment for Hodgkins Lymphoma. The patient had 9 of 12 chemotherapy treatments for Hodgkins Lymphoma and the cancer was responding very well. It became evident about two months ago that the patient was suffering from lung damage, so his oncologist took him off the bleomycin component of his chemotherapy regimen in September.

Then a couple of weeks ago his lungs suddenly gave out and he was gasping for breath and had to be rushed to the hospital. He was placed on supplemental oxygen and has been taking steroids to counteract the effects of the bleomycin. His lungs seemed initially to be improving, but his body was under such extreme strain that they chose to intubate and put him on a ventilator to avoid a collapse of the heart or lungs from the sheer exhaustion of breathing. He’s been on the ventilator since then, but improvement of the lungs appears to have plateaued. There have been various other complications but they appear surmountable if the lungs improve. The core problem is bleomycin injury or bleomycin toxicity.

The patient is receiving care south of Boston. The primary MD on the case is a critical care doctor and pulmonary specialist. Moving to another facility is not an option (he’s too fragile) but current doctor is open to input from other providers.

Regina Holliday is a Washington, D.C., art teacher, artist, muralist, patient rights arts advocate, founder of the Walking Gallery and the Medical Advocacy Mural Project. She is a blogger at her Medical Advocacy Blog.

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Facing advanced cancer, who among us wouldn’t look to our oncologist for expert advice on whether another round of chemotherapy makes sense?  But do you know what your oncologist cares about, and can you be sure her recommendations map onto your own treatment preferences?

A recent study lead by Michael Kozminski (I was senior author) shows that American oncologists downplay the value of treatments that improve quality of life, compared to the value they place on life prolonging treatments.

In our study, we surveyed oncologists across the United States and presented them with hypothetical treatment scenarios, to see what value they placed on potential treatments for patients with advanced cancer.

In one scenario, we estimated how cost-effective a new life prolonging chemotherapy would need to be before oncologists prescribed it.  We described the chemotherapy as prolonging patients’ lives, but also explained that we had no other data on how it impacted quality of life.  On average, we found that oncologists would be willing to spend as much as $200,000 for every year of life gained by this new treatment.

Continue reading “Does Your Oncologist Care?”

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Not to be overly dramatic, but for me the Supreme Court decision on the Affordable Care Act was a matter of life and death. Because the law was largely upheld, I will be able to continue receiving treatment for breast cancer.

I was one of the early beneficiaries of the law. When I was diagnosed with an aggressive form of breast cancer late last year, I had no health insurance, which meant my options were extremely limited. No insurer would pick up someone in my circumstances. But luckily, the Pre-existing Condition Insurance Plan had already kicked in, and it made it possible for me to purchase insurance under a government program.

I was uninsured not because I’m a lazy, freeloading deadbeat but because my husband and I are self-employed. We had been purchasing health insurance on the individual market along with 6% of the rest of the population. But after exhausting all of our resources trying to keep up with premiums of $1,500 a month, we had no choice but to cancel it.

Continue reading “How the United States Supreme Court Saved My Life”

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Imagine for a moment that you are an oncologist caring for a 53-year-old man with metastatic cancer, a person whose tumor has spread to lung and liver.

With standard chemotherapy, this man can expect to live around 12 months.  That standard treatment isn’t all that expensive in today’s terms, only $25,000 and his insurance company will pick up the entire tab since he is already maxed out on his yearly deductible and co-pays.

But wait!  Before prescribing the standard treatment, you find out there is a new chemotherapy on the market, one that costs $75,000 (in other words, fifty thousand dollars more than usual care) and has no more side effects than that standard treatment.

How much longer would patients like this have to live, on average, for you to feel that this new chemotherapy is warranted?

That’s not an easy question to answer.  But it’s not an impossible one either.  Clearly if the treatment would provide only, say, 1 day of additional survival on average, that would not amount to $50,000 well spent.  Just as clearly, if this man could expect 10 years of additional life, no one would deny him this new treatment.

So when, between 1 day and 10 years, does it become a tough call whether to prescribe this new treatment?

Continue reading “Paying an Arm and a Leg for a Month of Life?”

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Many of you know that eight months ago I was diagnosed with Stage IV inflammatory breast cancer, which has spread to my spine.  My incurable diagnosis means that I live with a chronic disease, just like millions of older adults. Life continues to be fairly routine with work, play, friends, and family.  One of my routines occurs on the first Monday of each month, when I visit the Maimonides Cancer Center for an infusion of drugs designed to slow the cancer’s impact on my bones.  The center is cheerful.  The staff greets me by name and hands me a buzzer that vibrates when I am next, the same buzzer you get at your local Olive Garden.  Each month I see many of the same people receiving their treatments.  I have already figured out who likes Dr. Phil, the local news channel, or a good book as they dutifully absorb their chemotherapy regimen.

One woman in particular caught my eye, perhaps because she is elderly and frail—just the kind of person that the Hartford Foundation is dedicated to helping. She appears to be in her eighties. Standing less than five feet tall, she walks in slowly and carefully, a pink crocheted cap on her head, accompanied each time by her son. Over the course of her infusion, her color fades. She leaves more frail than she came in. Each visit, she is visibly worse.

Of course I know that chemotherapy almost always causes short-term debilitation. But looking at this older woman, I can’t help but wonder. Did her clinicians talk to her and her son about her prognosis and the relative benefit of the chemotherapy? Did they understand the risks and benefits of aggressive versus palliative treatment? Maybe they do understand, and the chemotherapy will cure the cancer after months of misery, making it all worthwhile. But maybe not.

Continue reading “Can the Blind Lead the Seeing?”

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