Time out!


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Finally, someone said "enough." The National Football League conceded this week that there can actually be too much of a good thing. In this case, it's pink. The NFL's breast cancer awareness initiative includes pink "cleats, wristbands, gloves, sideline hats, helmet decals, captains' patches, chin cups, shoe laces, skull caps, sideline towels, eye shield decals and quarterback towels," as well as coins, socks, equipment and even goalpost padding. But when the league tried to introduce pink penalty flags, it turned out to be the final straw. (Read more about it here.)

pink football
Photo courtesy of

There's no question that pink's association with breast cancer awareness is one of the most successful partnerships in cause-marketing history. It seems like small businesses and giant corporations alike are eager to invest in the cause, because they know it will enhance their image with consumers and strengthen their bottom line. Case in point: Norma's Café. The wildly popular Dallas diner has been serving up Texas-style home cooking since 1956. Yet for some reason, the folks at Norma's thought it would be a good idea to capitalize on its famous biscuits and gravy by offering to "take a bite out of breast cancer" with "Biscuits for Boobies." You've surely seen similar efforts.

Biscuits for Boobies at Norma's Cafe

Last week, upon picking up my cholesterol medication, I discovered that my pharmacy is using pink prescription bottle caps throughout the month of October. I think most folks are pretty much aware of breast cancer. What they may not be aware of is that obesity, which causes high cholesterol, is also a risk factor for breast and many other types of cancer.

Pink Cap

It doesn't take much effort to list the myriad ways we're awash in pink this month. If you've come across something you want to share, take a picture with your cellphone camera and send it to my email. I'll post it here with your comments.

UPDATE: Kathy LaTour received this from a friend in Washington State. They're called "mammo-grahams" and are intended to raise awareness about the importance of mammography. Are they better when served with milk?

Mammo-Grahams Snacks


Nexavar halts thyroid cancer progression for five months


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Every year, about 60,000 Americans receive a diagnosis of thyroid cancer. The kinase inhibitor Nexavar (sorafenib), already approved for kidney and liver cancers, has been shown to keep thyroid cancer from progressing for five months, according to results of a phase 3 study presented at ASCO's annual meeting.

Although thyroid cancer is highly curable with surgery and radioactive iodine treatment, the disease becomes resistant to therapies in about 10 percent of patients, often metastasizing to the lymph nodes, lungs, bones and other sites. For nearly four decades, the only approved treatment for patients whose disease had progressed was doxorubicin, which was avoided because it was ineffective and highly toxic.

The multicenter, international DECISION trial included 417 participants with advanced differentiated thyroid cancer that had progressed within the prior 14 months on radioactive iodine. Participants were randomized to take Nexavar or a placebo. Those in the Nexavar group experienced greater tumor shrinkage (12 percent versus 0.5 percent), a higher rate of stable disease (42 percent versus 33 percent at six months), and a longer period of time to disease progression (10.8 versus 5.8 months).

Side effects were similar to those experienced by patients taking Nexavar for liver and kidney cancers: rash, fatigue, weight loss, hair loss, hypertension and diarrhea.

Of the four types of thyroid cancer (papillary, follicular, medullary and anaplastic), the vast majority (80 to 90 percent) of cases are papillary and follicular--the types Nexavar targets. Affecting more women than men, thyroid cancer is the fastest-increasing cancer in the U.S.


Let's talk about sex


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Sex is one topic that always seems to generate interest, even at a cancer research conference. Among the many studies presented at this year's annual meeting of the American Society of Clinical Oncology: a first-of-its-kind examination of spouses or long-term partners of patients with HPV-positive oropharyngeal cancers, which are located at the tongue, tonsils, pharynx and soft palate.

Gypsyamber D'Souza, an associate professor of epidemiology at Johns Hopkins University in Baltimore and the study's lead author, says fear of transmitting the virus can cause couples anxiety, resulting in reduced sexual intimacy and even divorce. She and her colleagues set out to learn whether sexual partners were at increased risk of infection from the human papilloma virus and if they needed to change their sexual behaviors.

The study found that the spouses or partners of patients with HPV-positive oral cancers were no more at risk of developing the disease than the general population.

Taking oral rinse samples from 166 participants with HPV-positive oral cancer and 94 of their spouses or partners, the researchers tested the samples for HPV DNA. After one year, samples were again taken and tested. The prevalence of HPV infection among partners (6.5 percent) was comparable to the general population.

Nearly all sexually active people will be infected with at least one type of HPV in their lifetime, even if they have only one sexual partner. The majority of infections do not develop into cancer, and most people exposed to the virus manage to "clear it," according to D'Souza.


Less is more in radiation for lung cancer

BY JON GARINN | MAY 15, 2013

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The optimal radiation dose for treating lung cancer was established more than 30 years ago, but improved technology led some radiation oncologists to experiment with higher doses. The results of a phase 3 trial comparing the standard dose (SD) radiotherapy with high-dose (HD) radiotherapy indicate that less is more, a least in terms of controlling the disease and prolonging survival.

"Conventional thinking has been that if one could give a higher dose of radiation, one could effectively kill the tumor better and thus prolong survival," said Jeffrey D. Bradley, a professor of radiation oncology at the Washington University School of Medicine in St. Louis and the study's lead author. In the past decade, he explained, several independent cooperative groups conducted a series of phase 1 and phase 2 trials that increased the radiation (measured in units called Gray, or Gy) from the standard 60 Gy to the higher 74 Gy, showing the safety and effectiveness of the higher dose.

"This phase 3 trial was designed to test this high-dose question," he said during a press conference leading up to the annual meeting of the American Society of Clinical Oncology (ASCO). The median survival for participants in the SD arm was more than nine months longer compared with participants in the HD arm. Moreover, recurrence rates were almost 10 percent higher among participants in the HD arm.

"I'm sure that many doctors were expecting that using the higher doses would have a better outcome, so this is a very surprising result," said Sandra M. Swain, ASCO president. "And especially when using these special radiation techniques that were designed to be more precise so you would again expect that maybe the outcome would be better. This really should put an end to higher dose treatment, given the better outcomes in the standard dose arm."

In the study, 464 participants with stage 3 non-small cell lung cancer were randomized to receive either SD or HD concurrently with chemotherapy (paclitaxel and carboplatin). Additionally, participants in both arms were randomized to receive Erbitux (cetuximab), but data on that aspect of the study was not yet available.

"A lot of phase 3 trials turn out negative when phase 2 trials turn out looking good," Bradley said in discussing the results. "So it was good to do a phase 3 trial and get this answered."


The Cost of Cancer


In our winter 2011 issue, we wrote about "financial toxicity" being an unwelcome side effect of cancer care, noting that even insured patients are increasingly going bankrupt because of soaring out-of-pocket expenses. It seems like nearly every day we hear another terrible tale of someone's financial hardship, and many of our readers have asked us to dedicate more coverage to the cost of cancer and practical steps patients can take to cope with it. Look for a special extended report on the subject with our fall issue.

In the meantime, don't miss a word of Steven Brill's brilliant cover story in the current issue of Time magazine. Consider it a staff recommendation. In fact, it should be required reading for every American.

Time Cover

Why? Because knowledge is power.

To say it's an eye-opener is an understatement. Be warned: The piece is hefty--weighing in at more than 20,000 words--so you might want to take it in manageable doses. But do take it. Think about it. Discuss it. Because until we make a brutally honest assessment of why the cost of health care is so high, we won't be able to do anything about it.

Brill begins with a fairly simple premise: The problem with health care in America isn't so much about who should pay for it but how much it costs. He begins by looking at hospitals, starting with nonprofit institutions, where profits are huge and patients get gouged. Astronomical markups on everything from high-tech medical devices to humble gauze pads are simply beyond comprehension. Insurance companies and Medicare are best positioned to bargain with healthcare providers so that patients don't pay these insane prices, but pity the poor souls who are uninsured or underinsured. By telling the stories of several patients and examining their medical bills, Brill spotlights everything that is wrong with our healthcare economy .

Surprisingly, Medicare withstands the scrutiny. In fact, it works so well that Brill makes the case for lowering the enrollment age to include near-retirees. I think the case could be made to either open up the program for anyone who wants to buy into it or simply turn it into universal health care. As Slate's Matthew Yglesias observes, "Taxes would be higher, but overall health care spending would be much lower since Universal Medicare could push the unit cost of services way down."

In addition to expanding Medicare coverage, Brill also offers a number of other solutions, such as reforming medical malpractice, taxing operating profits and imposing price controls--all good ideas, but highly unlikely. And until more Americans get involved and recognize the core problem, which Brill describes as "lopsided pricing and outsize profits in a market that doesn't work," nothing will get fixed. While Obamacare has "changed the rules related to who pays for what...we haven't done much to change the prices we pay," he concludes.

A few take-aways:
You will never look at a hospital bill the same way again. They've become so indecipherable with codes and acronyms that an entire cottage industry has sprung up around helping patients understand what they're being billed for.

If you're paying out-of-pocket costs for your treatment, negotiate with your doctor. Ask questions and discuss specific treatment and testing options with your doctor. Less expensive options may be available that can prevent you from hitting your insurance limit.

Don't be afraid to barter over the bill. Most billing representatives won't volunteer the information, but nearly everything is negotiable. Ask about charity programs, affordable payment plans, self-pay discounts and financial assistance. Do it before the bill gets turned over to a collection agency, when you still have room to negotiate.

When all else fails, turn to a billing advocate or a claims assistance professional. Among other things, these independent contractors can review medical bills and determine proper payment, negotiate with providers, resolve claim problems and audit fees and charges.


Targeted therapy for certain leukemias receives FDA approval ahead of schedule


Chronic myeloid leukemia (CML) and Philadelphia chromosome–positive acute lymphoblastic leukemia (Ph+ALL) are leukemias that develop when pieces of DNA from chromosome 9 and chromosome 22 break and switch places during cell division. A portion of chromosome 9's ABL gene fuses with a portion of chromosome 22's BCR gene, resulting in the BCR-ABL oncogene. This abnormal gene produces bcr-abl tyrosine kinase, a protein that triggers signals in the development of malignant white blood cells. In CML and Ph+ALL, these malignant cells crowd out healthy cells.

Tyrosine kinase inhibitors (TKIs), such as Gleevec (imatinib), Sprycel (dasatinib), Tasigna (nilotinib) and Bosulif (bosutinib) bind to these rogue proteins and "turn off" their activation signal. But in some patients, a mutant gene, T315I, prevents TKIs from reaching their target. Iclusig (ponatinib), a newly approved TKI, not only works to circumvent T315I but also thwarts other mutations. The FDA approved the drug more than three months ahead of schedule.

In the PACE trial, 449 CML or Ph+ALL patients who were intolerant or resistant to previous TKI treatments or had the T315I mutation received ponatinib. More than half (54 percent) of patients with chronic-phase CML experienced a major cytogenetic response, meaning more than 65 percent of their blood cells were cleared of the Philadelphia mutation, within 12 months, with nearly half (46 percent) experiencing a complete cytogenetic response. More than one-third (34 percent) of patients with advanced-phase CML or Ph+ALL experienced a major hematologic response, meaning their blood counts returned to normal, within six months of treatment. Like the approved TKIs, ponatinib works by preventing certain proteins (tyrosine kinases) from signaling cancer cell growth.

Side effects include blood clots and liver toxicity.


Learning about CML


Attending the 54th annual meeting of the American Society of Hematology in Atlanta was more of a learning opportunity than an occasion to report on major developments in the study and treatment of blood disorders. One cancer type of particular interest was chronic myeloid leukemia. Since the introduction of Gleevec (imatinib) more than a decade ago, doctors have a range of treatment options, and patients are living longer and with manageable side effects.

Gleevec still the treatment of choice
Dr. David Marin of the Hammersmith Hospital in London spoke about the importance of using Gleevec as a first-line treatment for newly diagnosed patients. Although more potent, second-generation drugs have been developed since Gleevec became available, it remains the therapy of choice for many doctors. Hundreds of thousands of patients with CML have taken Gleevec worldwide, and more than 80 percent of them have experienced a complete cytogenic response, meaning their blood cells contained no leukemia, after five years of therapy. But, Marin said, although a majority of patients do well on Gleevec, a "significant proportion" will need to try something else because of an unsatisfactory response or unmanageable side effects.

Prolonging the time to transplantation
That "something else" may be Sprycel (dasatinib), Tasigna (nilotinib) or Bosulif (bosutinib). Like Gleevec, these are tyrosine kinase inhibitors (TKIs), only more powerful. In former times, patients who required a second-line therapy often had no other choice but an allogeneic stem cell transplantation, which placed them at risk of developing Graft-Versus-Host Disease (GVHD). The introduction of these newer TKIs meant doctors and patients could try them as a second-line therapy or even a third-line therapy before resorting to a stem cell transplantation.

Side effects of TKIs
As you might imagine, these drugs, because they are all TKIs, have similar side effects, such as myelosuppression (impaired bone marrow function), fatigue, fluid retention, gastrointestinal disturbances, liver toxicity, muscular pain, joint pain and skin rash, among others. Yet each has unique side effects, as well. Marin described the advantages and disadvantages of each therapy, and concluded that Gleevec was still his treatment of choice and one that he would continue recommending to his patients.

Rethinking the concept of cure
Next, Dr. Francois-Xavier Mahon, a hematologist from Bordeaux, France, discussed whether it was possible to consider CML patients who had been successfully treated with TKIs to be cured, and if it was safe to discontinue treatment.

He began by talking about what we understand "cure" to mean. For most people, it means the disappearance of disease or all signs of the disease and a return to "normal" health. But the concept that a patient with CML can only be considered cured of leukemia if every last leukemia cell has been eradicated from his or her body may require some rethinking. "We may cure CML patients," he said, "but we may never know whether all leukemic cells have been completely eradicated." Consider microbiology and infectious diseases: the persistence of bacteria does not necessarily imply relapse, only remnant. Mahon suggested adopting the idea of an "operational cure," which allows for the fact that some leukemic cells can be found in the blood of normal individuals.

Easy does it
He called CML a "simple model of cancer," because it has a "one-step molecular hit driving the leukemic cells," meaning it's easy to identify and to target. CML begins with a simple genetic mutation, when pieces of DNA in chromosome 9 and chromosome 22 break off and switch places during cell division. A portion of chromosome 9's ABL gene fuses with a portion of chromosome 22's BCR gene, resulting in the BCR-ABL oncogene. This abnormal gene produces bcr-abl tyrosine kinase, a protein that triggers signals in the development of white blood cells. In CML, these malignant cells crowd out healthy cells. TKIs bind to these rogue proteins and "turn off" their activation signal.

Mahon described new efforts to safely discontinue treatments, as well as the risks of stopping therapy. Although a good number of cessation studies are under way worldwide, results are still inconclusive and long-term follow-up is needed.

The importance of being monitored
Finally, we heard from Dr. Susan Branford of the Centre for Cancer Biology at the University of Adelaide in Australia, who discussed the importance of monitoring patients for therapeutic response to both confirm adherence and determine whether discontinuing treatment would be possible.

Branford profiled three patients she had followed through long-term treatment. Each one had initial success taking TKIs, but experienced various ups and downs through the course of their therapy. She demonstrated how molecular monitoring led to an optimal response, and called for development of "good-quality, sensitive and standardized molecular monitoring."


Smoking's lasting impact


It's been nearly 30 years since my dad died from lung cancer. I never realized how memories of his unwillingness to stop smoking would still have an impact on me today.

Yet while our editorial team was discussing a lung cancer feature we're planning for next summer, Kathy LaTour's suggestion that we include a sidebar with tips on how to stop smoking drew from me an unanticipated response: I was incredulous.

How, I wondered, could smoking cessation tips have any impact on people determined to continue smoking even after receiving a lung cancer diagnosis? If they are addicted and determined to continue smoking, then no amount of advice we could provide would make any difference, I opined. It would just be a waste of space.

After much debate about the merits of including such tips, it suddenly occurred to me that my resistance to the idea was based on my caregiving experience from so long ago. I hated the fact that Dad kept smoking throughout his treatment and until his death. He was fiercely determined to beat his cancer, but he was also stubbornly opposed to breaking the habit. His brother continued to smoke through his tracheotomy tube, despite the ravages of throat cancer. My mom still smokes, and grows belligerent if anyone dares suggest she give up one of the only things that she enjoys.

Fortunately, my colleagues helped be recognized my transference. That was then; this is now. There are a lot more smoking cessation tools and assistance programs than there were 30 years ago. And it's unfair to our readers to assume they'll be as intransigent as my father or my uncle or my mother.

Without question, more can be done to help people stop smoking (the challenge is even greater among certain minority populations, as we reported on several years ago). And practical advice always trumps platitudes about willpower. Our commitment is to continue providing the very best information backed by science, even when that commitment is driven by a three-decade-old wish that didn't come true.

November is Lung Cancer Awareness month. Consider some of the facts about the disease:

Lung Cancer infographic


The next generation of genome studies


You may have heard that an international team of more than 440 scientists has published 30 studies detailing discoveries from a five-year investigation into the human genome. By all accounts, the results are mind-boggling.

The project, called the Encyclopedia of DNA Elements, or ENCODE, tries to make sense of the unknown part of the human genome. It seems that about 80 percent of DNA that was once thought to be "junk" is actually responsible for regulating all of the genes.

Gina Kolata from The New York Times did a great job of explaining the project and its implications on human health, so I won't try to reinvent the wheel here. But it suffices to say that scientists will soon have what they need to fight diseases much more effectively than ever before.

I asked our editor-in-chief, Debu Tripathy, MD, for his take on the news and its possible impact on cancer. He said this is "just the beginning of the story--we now have a better atlas of the genetic defects in cancer, but it will take time to understand how to target these genetic defects."

He added that it will take some time to sort out and start to validate which of these mutations are real drivers and then to develop drugs to target them. We're planning a feature on next-generation gene sequencing, so stay tuned to CURE to help you understand the genetic basis for cancer and new avenues for therapy.


The healthcare reform debate: You speak, we listen


On the heels of the Supreme Court's decision to uphold the Patient Protection and Affordable Care Act (PPACA), we asked you to tell us what you thought about the ruling and its meaning for people with cancer. And, you did.

We were pleased to receive many thoughtful comments, both on our blogs and on Facebook.

We've noticed a common theme in many of the responses: confusion. Without question, there are a lot of mixed messages out there, thanks primarily to television advertising and Internet chatter. Some of the misinformation can be attributed to politics as usual. It's no surprise that people will try to win support for their agenda by using scare tactics, half-truths or hyperbole.

It seems like nearly everyone agrees that, prior to the PPACA, healthcare in America was in need of reform. Where we disagree is on how certain reforms were legislated, others were not, and the role of government in the process.

At CURE, we're dedicated to providing a forum for discussion about and a nonpartisan assessment of the PPACA. In the coming weeks, we'll be hosting a Facebook discussion with legal and healthcare experts. Stay tuned for more details. We're also planning a series of guest blogs on the subject, and an in-depth feature to help explain the coming changes and what they mean to cancer patients, caregivers and survivors. Let us know if there's anything you want to ask or discuss in these forums.


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