Jon Garinn

	The 17th international Thyroid Cancer Survivors’ Conference will be held Oct. 17 to 19, 2014 in Denver. Sponsored by the nonprofit Thyroid Cancer Survivors Association, the event will feature more than 35 speakers who will discuss the latest advances in treating thyroid cancer, issues related to long-term survivorship, coping skills for well-being and more. A separate dinner and auction supporting thyroid cancer research will be held on Oct. 18. Conference registration is $50. For details, visit 

Articles

The 17th international Thyroid Cancer Survivors' Conference will be held Oct. 17 to 19, 2014 in Denver. 

Thyroid Cancer Survivors' Conference

	Started by two cancer rights attorneys, Triage Cancer is a nonprofit organization that provides education and resources about an array of survivorship issues, including nutrition, fertility, employment, legal matters, financial concerns, insurance, sexuality, pain management, advocacy and more. Through the organization’s website, users can access a speakers bureau of experts, an educational blog, previous seminars and webinars, tools and resources, as well as support for educational event planning. To learn more, visit 

Triage Cancer is a nonprofit organization that provides education and resources about an array of survivorship issues.

TriageCancer.org

The fall issue will be arriving in mailboxes soon, and our team has been hard at work to put the final touches on some compelling articles. Here's a lineup of what readers can expect:

Ductal carcinoma in situ (DCIS) is a condition of the breast that bears the genetic signature of cancer but is non-invasive, meaning the cells remain in their tissue ducts and don't invade a layer known as the basement membrane. The dilemma for many patients is that DCIS is almost always survivable, even when left untreated, yet a diagnosis can produce emotional distress and the possibility of overtreatment. Should women with DCIS have a lumpectomy or mastectomy? What about radiation and hormone therapy? Charlotte Huff addresses these questions, as well as still unresolved controversies surrounding the condition, and discusses non-surgical options, such as active surveillance.

How can biomarkers facilitate personalized medicine? While new cancer biomarkers are discovered all the time, the reality is that only a small number have advanced beyond the discovery phase to become useful in a clinical/practical sense. Why are so few biomarkers considered "reliable"? What limitations of current technology are hindering the discovery and development of new biomarkers? What does the revolution in genomics (next generation sequencing) hold for biomarkers? Maureen Salamon describes how research is helping us better use biomarkers, identify and validate new ones, and develop ways of using them in clinical trials so that promising therapies can get to patients faster.

The care that patients ought to receive at the end of their lives includes physical, mental, emotional and spiritual comfort, as well as social support. Studies show that people who discuss end-of-life care with their loved ones and healthcare providers feel less stress at the end of lives, and so do their families. Yet few people have these discussions. One reason is that some people with advanced disease don't know they're dying. Kathy LaTour explores why there is so much resistance to initiating these discussions, and explains why this remains a great unmet need in ensuring a dignified death. 

Prehabilitation is a fairly new concept that is quickly gaining momentum in cancer care. It involves baseline assessments of a patient's psychosocial and physical conditions prior to treatment, so that appropriate interventions and therapies can be deployed to shore up any deficiencies and optimize treatment success. Call it a boot camp for cancer treatment. For example, patients who are preparing for surgery for head and neck cancers may benefit from swallowing exercises. Or patients may boost their nutrition to fight fatigue. Jane Hill describes prehabilitation and discusses its usefulness in that window of opportunity between diagnosis and treatment.

Cancer and its treatment can lead to a range of potentially life-threatening conditions that require urgent action to correct them. The experience can be terrifying, especially when the patient's cancer team is far away and the patient must go to a local emergency room. Jeanne Erdmann defines an oncologic emergency and describes what patients should do if something suddenly goes wrong. 

Although lymphedema is mostly a complication of breast cancer treatment, the condition can result from treating a number of different cancers, including head and neck, ovarian, prostate and uterine, as well as lymphoma and melanoma--anywhere that nodes are removed or damaged by radiation or surgery. The condition include swelling, tightness, pain and reduced range of motion in one arm or leg, although sometimes both arms or legs can be affected. And because lymphedema is generally considered chronic, managing it requires constant care and, often, the help of a trained specialist. Sonya Collins reveals the latest in lymphedema treatment and prevention.

Sometimes, even the most well-intentioned caregivers can become overbearing, making the patient their "project." Don Vaughan suggests ways caregivers can avoid doing more harm than good. 

We'll also look at the link between certain food preservatives and cancer, the problems some patients are encountering when try to access cancer care using insurance plans they obtained through the Affordable Care Act's Health Insurance Marketplace, and a condition called arthralgia--a painful side effect of many cancer treatments that affects the joints.

What we're working on

On July 3, the Food and Drug Administration (FDA) granted accelerated approval to Beleodaq (belinostat) for treatment of patients with relapsed or refractory peripheral T-cell lymphoma (PTCL). It is the third drug that has been approved since 2009 for treating patients with this rare form of lymphoma. 

 were approved for use in this same patient population in 2009 and 2011, respectively. PTCL is a fast-growing immune system cancer affecting the T cells.More than 70,000 Americans are expected to receive a diagnosis of non-Hodgkin lymphoma this year, and 10 to 15 percent of those cases will be PTCL, according to the National Cancer Institute.The FDA based its decision on a single arm clinical trial of 120 participants who had received at least one prior treatment. Participants received the experimental drug until they experienced disease progression or an unacceptable toxicity. The overall response rate (meaning the percentage of participants who experienced either a complete or partial response to the treatment) was 25.8 percent, with a median response duration time of 8.4 months.Side effects included nausea, fatigue, fever, low red blood cells and vomiting. A small number of participants (less than 2 percent) experienced serious side effects, including pneumonia, infection, thrombocytopenia and organ failure. To receive full approval from the FDA, the manufacturer must continue to evaluate Beleodaq's effectiveness in further clinical trials.Beleodaq is also being studied in other cancer types, including liver, ovarian and non-small cell lung.

FDA approves treatment for rare form of lymphoma

We've had a handful of responses to our recent feature on integrative therapies, including opponents who insist that integrative oncology is "sham science" and proponents who want to make integrative techniques more widely available. Olivia Lawrence, an enthusiastic proponent, is responsible for community outreach at 

, based on Durham, N.C. She wrote to tell us that comprehensive cancer centers, such as the ones we referenced in 

, are not the only organizations offering integrative services. Cornucopia, like other nonprofit organizations throughout the country, offers integrative therapies free of charge to patients, survivors and caregivers.She says because Cornucopia is a non-clinical support center, it offers an environment that many participants prefer to a hospital setting--one that better facilitates peer-to-peer support. She emphasizes that Cornucopia's providers have the necessary licenses and certifications, and all are trained in how to work with patients who have particular treatment challenges.Cornucopia has identified 89 nonprofit cancer support organizations that provide no- or low-cost integrative services. The organization also offers an extensive list of 

. If you would like to know whether a support organization offers integrative services in your area, check 

Integrative services can be found in the community

The second national convention of women cancer survivors is scheduled for 

July 31—Aug. 2 at the Gaylord Opryland Resort in Nashville, Tenn

. Created “by women survivors for women survivors,” the event will feature celebrity guest speakers, including television personalities Bill and Giuliana Rancic, Emmy award-winning makeup artist Jan Ping, author and activist Geralyn Lucas, world weight-lifting champion Karyn Marshall, supermodel Emme and an array of experts. In addition to breakout sessions addressing survivorship issues, the convention will host special events and a vendor showcase of services, products and information. Registration is $125 and includes all sessions and events, as well as a makeover and breakfasts. For details, visit 

The second national convention of women cancer survivors is scheduled for July 31–Aug. 2 at the Gaylord Opryland Resort in Nashville, Tenn.

National Women's Survivors Convention

When Jenny Ahlstrom wanted to discuss her multiple myeloma with her oncologist, she would often “go in with mental questions and leave with nothing answered.” So, she created 

, a free app for iPhone and Android devices that helps patients and caregivers remember important questions, record discussions with their doctors, retain complex medical terminology and create reminders about prescriptions, side effects, symptoms and test results.

“As a patient, I understand the complexities and challenges of going through chemo and the effects it can have,” Ahlstrom says. “I think this is a simple, easy solution.”

In addition to easily creating and organizing text notes into folders by topic, the app enables users to add voice memos with playback. A one-time $1.99 in-app purchase allows users to email recorded memos, “so the whole family can be on the same page when it comes to treatment,” Ahlstrom says. All proceeds from the app go to fund patient support, education and cancer research. Search for Chemo Brain Doc Notes in the 

Chemo Brain Doc Notes is a free app that helps cancer patients and caregivers with their medical appointments.

Chemo Brain Doc Notes App

The summer issue is about to be delivered, and we've got an interesting line-up in store. Here's a glimpse at what readers can expect:

Neuropathy can be an often debilitating condition experienced by up to 90 percent of patients undergoing chemotherapy treatments. For most survivors, the nerve damage resolves on its own, but for some it doesn't and for others it shows up as a late effect. Kathy LaTour takes a look at what we know about the condition and what can be done about it. Current medications used to treat neuropathy are often opioid-based painkillers, which are effective but have side effects, such as confusion, gastrointestinal tract issues and hallucinations. Anticonvulsion medications and antidepressants have also been used, but have also been shown to cause significant side effects and, in some instances, interfere with the chemo's effectiveness. She examines new studies on the puffer fish neurotoxin and other options being studied, such as magnets in shoes, acupuncture and more.

The field of integrative oncology is gaining significance, with large randomized trials showing many supportive modalities improve quality of life in people with cancer. These studies have identified benefits and risks of certain integrative therapies, such as yoga, acupuncture, mindfulness-based stress reduction, massage, dietary strategies and nutritional supplements. We asked Laura Beil to give us a primer on integrative oncology, and to bring us up to speed on new research in the field that is actually changing the way patients are being treated.

Of the 30,000 new cases of liver and bile duct cancer in the U.S. this year, four out of five will be hepatocellular carcinoma. Heather Van Epps gives us a detailed look at HCC, discusses Nexavar (sorafenib), the only approved drug for treating advanced forms of the disease, and embolization techniques that take advantage of the organ's unique anatomic structure to target tumors.

Deborah Tolmach Sugerman writes about the importance of a strong therapeutic alliance between patients and their doctors. She cites a recent study of young adults with cancer that found those who had a strong alliance with their oncologist experienced improved adherence, a greater sense of social support and less illness-related grief. The study also found that those with a strong bond to their oncologist were more willing to adhere to treatment and more often adhered to oral medication.

An array of anticancer therapies can contribute to bone loss, making it essential for patients to understand their risks and know what they can do to prevent skeletal damage. Jane Hill presents the basics of bone health and offers strategies for strengthening bones throughout cancer treatment.

Cancer treatment often results in infertility for patients, leaving few choices for parenthood. Adoption is an option that many have chosen. But there are sometimes obstacles, such as health history (i.e., high risk of relapse, metastatic or chronic disease). Charlotte Huff explores some potential barriers to adoption after cancer and directs readers to some "cancer friendly" adoption agencies.

We'll also describe how certain grilling techniques can impart carcinogens to foods, discuss post-traumatic stress disorder in survivors of cancer, and look at the science of nanotechnology and what it means for cancer treatments and diagnostics. If you're not a subscriber to our print issue, you can still access all CURE content for free online of in the Digimag edition. Or, if you'd like to link to the summer issue content from the convenience of your email box, sign up for our 

After a long period with little progress, a number of new therapies for treating melanoma were highlighted at recent ASCO annual meetings, and this year was no exception. Hoping to build on the successful introduction of the immunotherapy drug Yervoy (ipilimumab), researchers investigated whether it would be effective in treating patients with earlier-stage disease who remained at high risk of recurrence after surgery. Yervoy was approved in 2011 for treating inoperable, late-stage melanoma. In the phase 3 study, 951 participants whose stage 3 melanoma had been surgically treated were randomized to receive Yervoy or a placebo. After 2.7 years, Yervoy was shown to reduce the risk of recurrence by about 25 percent compared with placebo. However, participants experienced considerable side effects, including inflammation of the colon, thyroid and pituitary gland, as well as skin rash. In fact, more than half (52 percent) of participants discontinued the treatment because of side effect severity, and five treatment-related deaths occurred.	Two other drugs--nivolumab and pembrolizumab--showed success in early phase 1 trials. In a large study of 411 participants with advanced melanoma, pembrolizumab proved effective in participants who had received multiple prior therapies, including Yervoy, as well as those whose metastatic disease was newly diagnosed. Overall, 34 percent of participants experienced tumor response, with an estimated survival rate of 69 percent. Twelve percent of participants experienced treatment-related side effects, but were considered manageable. Pembrolizumab, an antibody that blocks a pathway on T-cells, previously received a breakthrough therapy designation for treating inoperable, late-stage illness, and was granted a priority review under the Food and Drug Administration's accelerated approval program in May.	In a third study, researchers investigated whether combining the antibody drug nivolumab with Yervoy would improve long-term survival for patients with advanced melanoma. Results showed that 41 percent of the 53 participants responded to the treatment, with 17 percent experiencing complete remissions. The median survival rate was about 40 months, and side effects were considered manageable and reversible.

ASCO: Melanoma immunotherapy continues to show success

Thyroid cancer is considered highly curable, but for up to 15 percent of patients, the standard treatments of surgery and radioactive iodine (RAI) therapy aren't enough to keep the disease from progressing. Before the Food and Drug Administration (FDA) approved Nexavar (sorafenib) for treatment-resistant tumors in 2013, the only option for patients whose disease had metastasized was doxorubicin, which later proved to be ineffective and highly toxic. At ASCO's annual meeting, researchers announced results of a phase 3 trial that could provide a second treatment option: the oral kinase inhibitor lenvatinib. In February, the FDA granted lenvatinib its orphan drug designation, an incentive for pharmaceutical companies to develop treatments for rare diseases (not to be confused with FDA approval, which is only granted after research and clinical trials prove the drug is safe and effective).Of the 60,000 thyroid cases diagnosed annually, more women than men get the disease, with most patients between the ages of 25 and 65. This study involved 392 participants whose disease had progressed within 13 months of previous treatment. Participants had a median age of 63, and 51 percent were men. Researcher Martin Schlumberger, professor of oncology at the University Paris Sud in Paris, France, said the participants were randomly assigned to receive lenvatinib or a placebo, and participants taking the placebo were allowed to cross over to the lenvatinib arm if their disease worsened. In announcing the results, Schlumberger said 65 percent of participants who took lenvatinib experienced tumor reduction, compared with 2 percent who took the placebo. Moreover, the time to disease progression was more than 18 months for participants on the lenvatinib arm, compared with almost four months for those on the placebo. However, 97 percent of participants who took lenvatinib experienced some adverse events, primarily high blood pressure, diarrhea, decreased appetite, fatigue and nausea; 14 percent of participants had to stop taking the drug; and although four participants experienced a complete response (meaning they had no evidence of cancer), six participants died from treatment-related causes.Gregory Masters, an oncologist at the Helen F. Graham Cancer Center in Wilmington, Del., and a member of ASCO's communications committee who moderated the press briefing, said treating cancer patients with toxic therapies carries risks, but that patients and doctors have to balance the risk of treatment against the benefit of delaying or avoiding treatment.

Jon Garinn

Thyroid Cancer Survivors' Conference

TriageCancer.org

What we're working on

FDA approves treatment for rare form of lymphoma

Integrative services can be found in the community

National Women's Survivors Convention

Chemo Brain Doc Notes App

What we're working on

ASCO: Melanoma immunotherapy continues to show success

ASCO: Second option for hard-to-treat thyroid cancer

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