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Good Palliative Care, Bad Palliative Care: A Tale Of 2 Doctors

By Marie Colantoni Pechet

As a Stage 4 colorectal cancer patient, I have had experience with palliative care doctors.

Fortunately, I haven’t had the need to meet with one in a few years.

But recently, I started experiencing pain that didn’t go away with my normal methods. I have a high pain threshold, and when I do have pain, I view it as a message from my body and I do my best to work with it. I also have a number of mind-body methods that I use to manage the pain.

I can’t recall ever taking drugs for pain. Even after my mastectomy, I didn’t need any pain medication.

Marie Pechet and family (courtesy)

Marie Pechet and family (courtesy)

But when this recent pain couldn’t be managed by my usual approaches, I resorted to taking two Tylenol, which I considered to be strong medicine (well, outside chemotherapy drugs!).

Still, the pain, even after taking Tylenol, was debilitating, so I decided to ask for something stronger. Asking for pain medication was new territory for me, and a big step.

I wrote a piece about on how wonderful I found palliative care doctors, and I made the assumption that they were all the same. So when my palliative care doctor couldn’t see me for a week, I agreed to see a different palliative care provider.

In this case, she was a nurse, though I don’t think that is the relevant difference. I walked into her office, nervous about starting on pain medication. Here are some assumptions I had about pain meds and cancer patients:

1. It isn’t a temporary situation and the dose only increases until you die.

2. You can’t drive while taking them, so your life is even more restricted than it already is.

3. They can be addictive.

4. Pain gives me a message about how my body is doing, and without feeling that, I would be out of tune with my body.

5. You are to take pain medication before you really feel the pain, to “stay ahead of it.” But what if I take it when I don’t really need it, when the pain would not actually get worse?

6. Narcotics cause constipation, which is a problem for me to begin with.

I explained all this to the nurse, and the fact that I really don’t take pills. I also explained that I tend to vomit during chemotherapy, which makes it difficult to swallow pills. I told her that I wanted to understand more about what I might be taking.

She sat quietly and let me speak, then she said, “You need to take this” and wrote out a prescription for a narcotic.

I was stunned and didn’t know where to begin.

“Is there something I can try that is between regular strength Tylenol and a narcotic?” I asked her.

“I believe this is the best for you,” was her firm reply. Continue reading

Cancer Immune Therapy Headed For More Widespread Use

By Karen Weintraub

Cancer immune therapy — an approach that harnesses the body’s own disease-fighting system — is saving more patients with more types of cancer, and scientists are getting better at predicting who will benefit, studies released over the last few days show.

Among the findings presented at the American Society of Clinical Oncology’s annual meeting, ongoing in Chicago:

— Newer immune-therapy drugs appear to be as or more effective than the first-generation drug, with fewer side effects.

— Genetic fingerprints may help determine which patients will benefit the most from immune therapy.

— Immune therapy may be as or more effective than chemotherapy for some cancer types.

Three years ago this week, cancer immune therapy jumped to prominence when studies revealed that it could extend the lives of people with lung cancer, the biggest cancer killer.

Last weekend, at the oncology conference — one of the biggest in cancer care — more studies showed the breadth and possibility of immune therapy.

Malignant melanoma (Prakash H Muddegowda/Flickr)

Malignant melanoma (Prakash H Muddegowda/Flickr)

For a century, researchers tried to unleash the power of the immune system against cancer. How could a system that fought off terrible viruses and bacteria be so useless in the face of the body’s own cells?

The potential promise the new wave of therapies is that once the immune system takes control of a tumor, it can search out cells throughout the body, and keep the cancer in check indefinitely.

In studies of melanoma, for instance, where this new approach to immune therapy research began, those patients who responded well to the treatment have survived a nearly universally fatal disease for more than a decade.

About 15 percent of patients with advanced lung cancer are still alive three years later, according to other research.

“The trajectory for some of these patients are that they’re going to be cured, which obviously is pretty incredible for someone with advanced stage cancer,” said Naiyer Rizvi, director of thoracic oncology and immunotherapeutics at Columbia University Medical Center.

Still, treatment with immune therapies remains largely experimental — “promising” rather than proven approaches.

Supercharging Immune Cells

It took the insight of a Texas researcher named James Allison, now at the MD Anderson Cancer Center in Houston, to make the difference. He realized that rather than supercharging immune cells to fight cancer — which had been tried in vain for decades — researchers needed to release the brakes cancer had placed on the immune system. Once this hold was lifted, the immune system could do its job. Continue reading

Ending ‘The War’ And Giving Up ‘The Fight': How Not To Talk About Cancer

Not a good analogy for cancer: "A Battle Scene" by Luca Giordano, late 17th century, Norton Simon Museum. (Wikimedia Commons)

Not a good analogy for cancer: “A Battle Scene” by Luca Giordano, late 17th century, Norton Simon Museum. (Wikimedia Commons)

By Dr. Isaac Chan
Guest contributor

Hers was the face of someone defeated by cancer. Our conversation was grim. She wanted to “fight,” to continue treatment. But there were no more options.

I vaguely remember speaking, feeling hopelessly ill-equipped. I, too, felt defeated. As a young physician and aspiring oncologist, I wondered: How do we prepare ourselves and our patients for these conversations?

Thankfully, I am not alone in struggling with this question. A new theme in medicine has emerged: how to talk about dying. As a field, oncology has been at the forefront of this movement. Some suggest making exposure to end-of-life encounters mandatory during medical school. Others stress creating systems and providing more resources for patients and doctors to encourage earlier planning for death.

But in order to facilitate and advance this difficult conversation, we must first change the very words we use to discuss cancer.

When the National Cancer Act was signed in 1971, our nation’s political and social will was focused on a “war on cancer.” Our widespread use of this language is rooted in a propagandist history promoting the belief that, with enough resources, this is a conflict we will win. Consequently, victory became defined only by “defeating cancer,” or finding a cure.

A visit to the American Cancer Society website asks you to join the “fight against cancer;” and a majority of public cancer-related media is packed with more war imagery. While the war description of cancer has resulted in unprecedented attention and fundraising for cancer care, research and survivorship, a balance should be reached between these successful efforts and language that is a realistic assessment of what can be accomplished today, for the patient, right now.

Cancer is a unique disease. To take the war analogy further, cancer is not a foreign agent infiltrating our bodies, such as an infection — cancer is a coup d’état, a tumorous growth from within us. One of the great paradoxes of cancer treatment is that targeting cancer inevitably means targeting our own bodies. Continue reading

Cancer Haves And Have-Nots: Care And Treatment In 2 Different Worlds

By Michael J. Misialek, M.D.
Guest Contributor

Imagine feeling a lump on your body, visiting a doctor, and then waiting seven months (if you’re lucky) to find out whether it is cancer.

This has been the reality for the vast majority of patients in two of the world’s most impoverished nations, Rwanda and Haiti — both emerging from different but unthinkably grim histories of structural violence.

But since 2012, more patients are getting the care that everyone deserves, no matter what country they live in. A medical partnership between several Boston-based hospitals has radically reduced turnaround time for cancer diagnosis, and shrunk the number of people who fall through the cracks.

It is difficult to quantify the exact numbers here, since record keeping in the past has been poor. One data point: In Rwanda, where these interventions are in place, far fewer patients are lost to follow-up after they’ve been treated compared to patients in other poor countries, according to Dr. Larry Shulman, senior vice president for medical affairs at Dana-Farber Cancer Institute, and leader of the medical partnership.

As a pathologist at of one of these partner institutions — Newton-Wellesley Hospital — I can’t help but think about the patient behind the slides under the microscope. Here’s one: Tushime, an 11-year-old Rwandan girl, who had a large tumor protruding from her jaw.

The tissue sample from Tushime’s tumor arrived in Boston in a suitcase carried by an employee of Partners in Health, the global nonprofit. Like all other specimens, hers was processed into a slide by the pathology department of Brigham and Women’s Hospital and read by Harvard faculty.

Tushime’s tumor turned out to be a rhabdomyosarcoma, a common childhood sarcoma. After 48 weeks of chemotherapy and surgery in Rwanda, she is now healthy and free of disease. Doctors there used standard chemotherapy for a cost of about $300 (which was covered by Partners in Health, Dana Farber and the Rwandan government). They relied on age-old, tried and true chemotherapy drugs; in comparison, the newer chemotherapy agents in the U.S. often cost several thousands of dollars.

Even though access to care has improved dramatically in the developing world there is so much work to be done. There are patients who still present with tumors at an advanced stage, many being neglected for months or even years because of barriers to care. There’s often a lack of access to facilities for both diagnosis and treatment, and funding for cancer care is limited. As a result, ordinary diagnoses become extraordinary.

This is an image of a less aggressive (low grade) breast cancer, something that is fairly common among patients in the U.S. You can see the well formed tubules and glands of cancer, but fewer tumor cells growing in a more organized fashion -- only about 30 percent of the image is tumor. (Courtesy of Michael J. Misialek)

This is an image of a less aggressive (low grade) breast cancer, something that is fairly common among patients in the U.S. You can see the well formed tubules and glands of cancer, but fewer tumor cells growing in a more organized fashion — only about 30 percent of the image is tumor. (Courtesy of Michael J. Misialek)

This is an image of an aggressive (high grade) breast cancer not uncommonly diagnosed among patients in countries where access to medical care is limited, such as Haiti. You can see a solid mass of cancer -- the photo is 100 percent tumor. (Courtesy of Michael J. Misialek)

This is an image of an aggressive (high grade) breast cancer not uncommonly diagnosed among patients in countries where access to medical care is limited, such as Haiti. You can see a solid mass of cancer — the photo is 100 percent tumor. (Courtesy of Michael J. Misialek)

Under my microscope, I’ve seen some of the most aggressive appearing tumors from patients in these countries. What are typically rare cancers here in the U.S., such as sarcomas or unusual variants of breast cancers, are all too common in developing nations. Continue reading

Personalized Cancer Test Pinpoints Best Drug For Patients

By Alison Bruzek

Cancer, whether in the pancreas, the ovaries or the liver, can take on different characteristics and spread in different ways. That’s why, unfortunately, there’s no one-size-fits-all drug to help patients fight back.

But a new, quick test can personalize treatment and help oncologists choose which chemotherapy route to take.

The test, called Dynamic BH3 Profiling, quickly predicts whether or not a drug will work for a patient by first trying that drug on a tumor sample in the lab. A paper describing the method, which researchers say could become more widespread within a couple of years, was published in the journal Cell this week.

The idea echoes how we choose the most effective antibiotics, says study author Dr. Anthony Letai, a cancer researcher with the Dana-Farber Cancer Institute.

A new tool for predicting relapse in acute myelogenous leukemia (AML) was developed by Dr. Anthony Letai (Courtesy of Dana-Farber Cancer Institute)

A new tool for predicting relapse in acute myelogenous leukemia (AML) was developed by Dr. Anthony Letai (Courtesy of Dana-Farber Cancer Institute)

“When we’re trying to choose antibiotics for people … we simply isolate the bacteria that’s causing the problem and expose it to all the drugs that are available,” he says. Then researchers choose the drugs that best put a lid on the multiplying bacteria.

“That has operated for many, many decades,” Letai says, “so we thought, why not do that for cancer cells?”

Letai’s team isn’t the first to think of this strategy. “People have tried to do this kind of thing in years past but there have been a variety of advances in technology … that make it more feasible this time around,” says Levi Garraway, a cancer researcher at Dana-Farber who was not involved with the study.

What’s different about Letai’s work is its speed: It can quickly determine whether a drug, or combination of drugs, is working. The test looks not at when the tumor cells are dead, but rather when they’re beginning to die.

The ‘Death Switch’

The researchers found that there is a point of no return, a threshold of doom, when cells begin to die that is indicative of their actual death. The team looked at varying types of cancer cells (breast, lung, melanoma) and saw that there was essentially a death switch that when flipped on, ensured the cell’s destruction.

Examining if a cancer drug flipped this switch, instead of waiting to see if the cells would eventually die, allowed the researchers to know, in about 16 to 24 hours, which drugs were working. Continue reading

Debating Vitamin D: Leading Docs Still Wrangling On Best Dose For Patients

(Suzanne Schroeter/Flickr)

(Suzanne Schroeter/Flickr)

The message on vitamin D is pretty clear if you talk to Dr. JoAnn E. Manson, M.D., chief of the preventive medicine division at Brigham and Women’s Hospital in Boston, who is leading the largest clinical trial in the world investigating the potential health benefits of vitamin D. It boils down to this: Curb Your Enthusiasm. At least for the time being. Even in the midst of a hellish winter when you may be tempted to take an extra dose of the so-called “Sunshine Vitamin” for a boost.

In a commentary piece published this week in the Journal of the American Medical Association, Dr. Manson urges caution. She says that even though the public has become smitten with vitamin D, its growing popularity has led to mega-dosing that’s not backed by the current evidence. “More isn’t always better, more is sometimes worse,” Manson said in an interview. “We don’t yet have the answers, so we shouldn’t make assumptions.” But, she adds, in a couple of years, gold-standard evidence on whether higher doses of vitamin D are good for you should be out.

But get on the phone with Dr. Michael F. Holick, Ph.D., M.D., a leading vitamin D proponent, endocrinologist at Boston Medical Center and professor at Boston University School of Medicine, and you’ll get a totally different, but equally clear message. Vitamin D deficiency and insufficiency are far more widespread than certain professional medical groups suggest, Holick says, and dosing at higher levels shows “no evidence of toxicity.”

How did we get here and what’s a patient to do?

Here’s a little background:

In debates over nutrition, vitamin D is one of those supplements that’s drawn both passionate supporters and equally aggressive skeptics over the years. And, like coffee, chocolate and red wine, it’s often the subject of studies that can make your head spin: it’s good for you…until it’s not.

The current vitamin D guidelines from the Institute of Medicine recommend 600 IU’s per day for adults up to 70 years old and 800 IU’s per day for those over 70. “This,” writes Manson in her JAMA piece “is equivalent to 3 to 4 daily servings of fortified foods such as milk, yogurt, soy beverages, orange juice, or cereal, plus fatty fish twice per week. These amounts are adequate for at least 97.5% of U.S. and Canadian residents, she says, and it’s good even in the bleakest, darkest season, “even if you’re in Antartica in winter.” Continue reading

Art As A Conversation About Cancer With ‘Anyone Who Will Listen’

"Adjusted Schedule" by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

“Adjusted Schedule” by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

Art, in its essence, is just another way to tell a story, a way for humans to make meaning out of their experiences. At Health Story Collaborative, a nonprofit founded by Dr. Annie Brewster, a Boston internist and CommonHealth contributor who uses storytelling in a therapeutic context, artists are invited to tell their unique stories.

Here, Dennis Svoronos, a Boston-based sculptor who describes his work as existing “between art and engineering,” reflects on his cancer as a force for creativity and social engagement.

By Dennis Svoronos

In September of 2009 — at 26 years of age — I was diagnosed with cancer after experiencing the first of many seizures. Of all the trials I could imagine that lay ahead, I never thought most of them would be exercises in recollection.

Patient name? Dennis Svoronos (thankfully I can always get this one)

Date of birth? 3/8/83 (a palindrome, helps to keep it easy)

Occupation? Artist (maybe not my parents first choice)

Approximate date of last surgery? 11/09 (Who forgets their first brain surgery)

Existing medical conditions? Anaplastic Astrocytoma (a cancerous brain tumor)

Repeat daily, for years.

"Just in Case" by Dennis Svoronos (Courtesy of the artist)

“Just in Case” by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

As time progressed; I remember those waiting rooms — questions and ID tags — much more than the operating theatre and injections; trauma is kind of like that.

However, they made me feel intrinsically linked to my disease. What was I, without these suffixes of sickness to identify with? Somehow, all my other unique and admirable qualities were set aside for the identifier of ‘cancer patient’.

It’s easy to resign to the belief that those forms and wristbands define your life, mere statistics, data — you and your cancer. Just as painless is to ignore the process completely, pretending your exams and operations are the bad dreams of another person, your ‘real life’ goes on unaffected.

Either way, it seems you’re not to talk openly about cancer, and it is difficult for most; patients, family and doctors alike. My initial sense was, it would be easier for me — and more comfortable for others — to keep off the topic. Sickness is a surprisingly taboo subject in a very liberal culture.

The artist in me, however, couldn’t stop questioning why we hide from the discussion. Continue reading

Rethinking Cancer Research Through ‘Exceptional Responder’ Patients

Grace Silva and her oncologist, Jochen Lorch (Photo: Sam Ogden, Dana-Farber Cancer Institute.)

Grace Silva and her oncologist, Jochen Lorch (Photo: Sam Ogden, Dana-Farber Cancer Institute.)

By Richard Knox

By all odds, Grace Silva should have died more than three years ago. Instead, this 58-year-old grandmother is helping scientists rethink cancer treatment and research.

Silva’s case, detailed in this week’s New England Journal of Medicine, is one of only three recently published accounts of what cancer doctors call “exceptional responses” to a drug called everolimus (brand name Afinitor).

It was approved two years ago to treat certain breast cancers and is also used against some kidney and pancreas tumors. A couple of months after Silva started taking the drug, her thyroid tumors, which had spread to her lungs, melted away to nearly nothing. That basically never happens with this aggressive tumor, known as anaplastic thyroid cancer. “It was a near-complete response,” says her oncologist at Dana-Farber Cancer Institute, Dr. Jochen Lorch. “That in itself is exceptional. When we saw it, it was one of the better days around here.”

Studying The Exceptions

More remarkable still, Silva’s tumor stopped growing for 18 months. We’ll come back to what happened after that. But first, you should understand this story isn’t about everolimus or any particular cancer drug. It’s about how cancer specialists are learning how cancer works at the most basic level — by studying exceptional responders like Grace Silva.

And to appreciate why her case is important, you need to know how researchers figured out why she was an exceptional responder. It’s partly due to a five-year-old technology called next generation sequencing. It’s a cheap and rapid way of spelling out the genetic code of, in this case, individual patients’ tumors. Researchers can then look for gene mutations that are driving the uncontrolled growth that is cancer.

Continue reading

WSJ: Women At Risk, Doctors Split On Procedure Linked To Rare Cancer

Here’s another excellent Wall Street Journal report on the controversial procedure known as “morcellation.”  Reporter Jennifer Levitz notes that even after the FDA issued a warning on the practice (which involves a “laparoscopic power morcellator” that allows for less invasive surgery to remove fibroids by slicing them up, but can also potentially spread a rare type of cancer through the body) doctors are split on how to proceed.

According to the report:

The FDA said women undergoing surgery for what look like benign fibroids actually have a 1 in 350 risk of hosting an undetected cancer called a uterine sarcoma. Morcellating these tumors can spread cancerous tissue internally and significantly worsen the odds of long-term survival, the agency said.

So what are women to do when the medical community itself is divided? From the WSJ:

(wikimedia commons)

(wikimedia commons)

A number of doctors believe the FDA overreached, and think the cancer risk is so small that gynecologists can go an entire career without seeing a case. Others call the advisory a necessary precaution.

Hospitals and private practices are taking an array of approaches. The University of Pittsburgh Medical Center system, which has more than 50 obstetrics and gynecology practices, opted to continue using the device.

The medical system changed its informed-consent forms to include wording on cancer risk and told doctors to discuss the risk with patients. But Allen Hogge, chairman of obstetrics, gynecology and reproductive sciences there, questioned the data behind the FDA’s estimate. The FDA began looking at the issue after media reports late last year about a prominent Boston doctor who discovered she had sarcoma after morcellation.

“I think this is mostly public relations and not science,” Dr. Hogge said. In response, the FDA said it conducted a rigorous analysis of published literature.

The common practice of morcellation, which is often used for hysterectomies, came under fire when Dr. Hooman Noorchashm, a cardiothoracic surgeon at Brigham and Women’s Hospital and his wife, Dr. Amy Reed, an anesthesiologist at Beth Israel Deaconess Medical Center launched a publicity campaign aimed at stopping the procedure, Continue reading

Mother’s Day Memo: Don’t Forget Women Who Can’t Have Kids

(clappstar/flickr)

(clappstar/flickr)

By Karen Shiffman
Guest contributor

Last year, even days afterwards, I was still recovering. (And no, this isn’t a rant against Mother’s Day. I salute Moms. Hooray for flowers, manicures, homemade cards. I bought my mother earrings with blue lapis to match her eyes. I hope to borrow them, soon.)

But for me, Mother’s Day is the hardest date on the calendar: I can’t have children and will never be a biological mother. Bad genes, bad luck and a huge cancer scare a while back left me without a womb and a few other body parts.

But at least I have no cancer; I dodged the big one — twice. After my surgery, friends danced around the fertility issue, but I shut them down with this effective retort: “I’m lucky to be alive.” Looking back, I think they were just projecting their own anxieties about their biological clocks. I, on the other hand, was fine.

And I continued to feel fine for a while. I looked at condos. Got back in the pool. Went back to work. Everyone marveled at how quickly I’d bounced back. Then Mother’s Day came, and I fell apart. Bam. I couldn’t even buy my mother a card that first year. It was ugly.

The following year, as Mother’s Day approached, I didn’t do much better. My family went out for a celebratory brunch; I stayed home. I said it was too painful to be out with all those happy moms and families. I took my mother out to dinner later that week.

I confided to a friend about my struggle. He listened, comforted me and then did something extraordinary. The Sunday after Mother’s Day he lifted the chalice at his church, and spoke these words to the congregation:

“I light this second candle for all the special women for whom Mother’s Day last Sunday brought pain and anguish. For those women who are infertile or medically unable to conceive a biological child.”

He went on to talk about women who had suffered miscarriages or were estranged from their children by divorce or misunderstandings. He ended the blessing this way: “May our prayers and concerns be with all of you, this day.”

He got it. He heard me. I wasn’t alone. Continue reading