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Monday, October 05, 2015



The novel histone deacetylase (HDAC) inhibitor belinostat induced complete and durable responses with manageable toxicity as a single agent in patients with relapsed or refractory peripheral T-cell lymphoma (PTCL), according to a study led by Owen A. O’Connor, MD, PhD, Professor of Medicine and Experimental Therapeutics, Director of the Center for Lymphoid Malignancies, and Co-Program Director of the Lymphoid Development and Malignancy Program in the Herbert Irving Comprehensive Cancer Center at Columbia University Medical Center.


The drug’s safety profile suggests that it could be combined favorably with other regimens or agents to further improve outcomes for this hard-to-treat disease, the team wrote in the study—the pivotal Phase II BELIEF (CLN-19) trial--published in the Journal of Clinical Oncology (2015;33:2492-2499).


PTCLs represent a heterogeneous group of aggressive lymphoid malignancies constituting approximately 10 percent of non-Hodgkin lymphoma cases, with five-year survival rates of less than 32 percent, the article notes. Anthracycline-based regimens--predominantly cyclophosphamide, doxorubicin, vincristine, and prednisone, and sometimes including etoposide--are commonly used as first-line therapy but have not resulted in durable remissions across the subtypes of the disease.


None of the coauthors could be reached for further comment, but a researcher not affiliated with the study,   Amanda Cashen, MD, Associate Professor in Bone Marrow Transplantation & Leukemia Section of Washington University School of Medicine, said that although the response data had been presented in abstract form previously, the JCO publication for the first time provides full details about the study population and the spectrum and duration of responses.


“Belinostat thus joins the growing list of drugs that have activity in relapsed and refractory PTCL,” she said. “However, like other recently approved drugs in this space, the response rate is modest.”


Pralatrexate, Romidepsin, Brentuximab

Three drugs are currently FDA-approved in the United States for the treatment of relapsed or refractory PTCL—all of which received accelerated approval, with the decisions based on the results of nonrandomized Phase II studies:

  • Pralatrexate, a folate antagonist;
  • Romidepsin, another HDAC inhibitor; and
  • Brentuximab vedotin, an antibody-drug conjugate directed to the CD30 protein.

The researchers note that although all three represent advances in the treatment of patients with relapsed or refractory PTCL, most patients with continue to experience relapses. In addition, the drugs have unique toxicity profiles—for example, thrombocytopenia for pralatrexate and romidepsin and peripheral sensory neuropathy for brentuximab), limiting their use in select patients.


“Thus, durable, well-tolerated disease control is achieved in only a minority of patients, creating a need for additional effective treatment options,” the researchers wrote. “The recent emergence of several new drugs specifically active in T-cell lymphoma creates a unique opportunity to combine these agents and potentially generate novel first-line treatment platforms with superior outcomes.”


Belinostat is a hydroxamic acid–derived pan-HDAC inhibitor that broadly inhibits all zinc-dependent HDAC enzymes, with high affinity for class I HDACs 1, 2, and 3, but also class II HDACs 6, 9, and 10 and class IV HDAC 11.


Mechanism of Action

Cashen explained that HDAC inhibitors work through epigenetic changes: “After treatment with an HDAC inhibitor, changes in histone proteins attached to DNA will change the DNA structure, which affects the patterns of gene expression. Why T-cell lymphomas are susceptible to HDAC inhibitors and which specific genes affect the response are important research questions.”

In the study published in JCO, 129 patients with confirmed PTCL who had disease progression after one or more prior therapies received belinostat at a dose of 1,000 mg/m2 as daily 30-minute infusions on days 1 to 5 every 21 days. The patients had a median of two prior systemic therapies.


The overall response rate (ORR) in the 120 evaluable patients was 26 percent, including 13 complete responses (CR) (11%) and 18 partial responses (15%). The median duration of response was 13.6 months, with the longest at the time of the report still ongoing at 36+ months.


Median progression-free survival was 1.6 months and median overall survival was 7.9 months. Twelve of the enrolled patients underwent stem-cell transplantation after receiving belinostat.


The most common grade 3 to 4 adverse events were anemia (experienced by about 11% of patients), thrombocytopenia (7%), dyspnea (6%), and neutropenia (also 6%).


The results, although still modest, have “established that belinostat produces a meaningful ORR of approximately 26 percent, with CR rate of 11 percent, and has a favorable toxicity profile, producing substantially less myelosuppression and no mucositis compared with the adverse events reported with other approved agents,” the researchers said.


Cashen said that brentuximab should be the first choice for patients with relapsed anaplastic large cell lymphoma, since that lymphoma expresses CD30, the target of brentuximab. “Otherwise, though, we do not know how to prioritize the other agents approved for relapsed or refractory T-cell lymphoma.”


Basis for New Treatment Paradigm?

O’Connor and colleagues wrote that they believe that HDAC inhibitor–based platforms could form the basis of new treatment paradigms for PTCL: “Although the precise mechanism of action of HDAC inhibitors is not defined, as a class, HDAC inhibitors have clear reproducible activity in this disease setting. In addition, the strategy of combining HDAC inhibitors with antitumor agents represents a promising opportunity to develop new treatment regimens for patients with PTCL.”


In addition, belinostat’s low incidence of grade 3 to 4 hematologic toxicities suggests that the drug could be combined safely with cytotoxic chemotherapies.


Cashen agreed: “Belinostat, romidepsin, and pralatrexate each have a single-agent response rate of 25 to 30 percent, and we may get better efficacy by combining these agents with each other or with other chemotherapy drugs.


“I wouldn't hesitate to enroll any eligible patient with relapsed PTCL in a clinical trial of novel combinations. But outside of a clinical trial, there is no combination that has proven to be more effective, with a good safety profile, than single-agent therapy.”


The researchers reported that in terms of toxicity, belinostat monotherapy was well tolerated in this heavily pretreated population, with few patients requiring dose reductions (12.4%). The drug was also tolerated by patients who would not have been candidates for treatment with the other approved treatments, such as those with low baseline platelet counts of less than 100,000/µL--with an overall response rate of 15 percent in this challenging patient population.


Future Directions

Looking toward the future, Cashen said: “We need more clinical trials of novel combination therapies in PTCL, and we need to improve the front-line therapy so fewer patients relapse.


“Also, since some patients do have dramatic and durable response to belinostat, we need biomarkers that can identify these patients.”

Monday, October 05, 2015

Of the nearly 1,000 current clinical trials devoted to lymphoma in the National Cancer Institute’s database, only seven are focused specifically on cutaneous T-cell lymphoma. They are the following (three Phase III, three Phase II, and one Phase I):


“A Phase 3 Trial of Brentuximab Vedotin(SGN-35) Versus Physician's Choice (Methotrexate or Bexarotene) in Patients with CD30-Positive Cutaneous T-Cell Lymphoma”

Phase: Phase III

Type: Treatment

Age: 18 and over

Trial IDs: C25001, NCI-2012-01066, 2010-024215-14, NCT01578499


“Study of KW-0761 Versus Vorinostat in Relapsed/Refractory CTCL”

Phase: Phase III

Type: Treatment

Age: 18 and over

Trial IDs: 0761-010, NCI-2012-02782, NCT01728805


“Topical SGX301 (Synthetic Hypericin) for the Treatment of Cutaneous T-Cell Lymphoma (Mycosis Fungoides)”

Phase: Phase III

Type: Treatment

Age: 18 and over

Trial IDs: HPN-CTCL-01, NCI-2015-00891, NCT02448381


“A-dmDT390-bisFv(UCHT1) Immunotoxin Therapy for Patients with Cutaneous T-Cell Lymphoma”

Phase: Phase II

Type: Treatment

Age: 18 and over

Trial IDs: FDA IND 100712, NCI-2014-00420, NCT00611208


“Donor Transplant, Total Lymphoid Irradiation, and Antithymocyte Globulin in Treating Patients with Cutaneous T Cell Lymphoma”

Phase: Phase II

Type: Treatment

Age: 18 to 75

Trial IDs: BMT206, NCI-2011-00855, SU-04062009-2138, NCT00896493


“Efficacy, Safety and Tolerability Study of SHAPE in IA, IB or IIA Cutaneous T-cell Lymphoma”

Phase: Phase II

Type: Treatment

Age: 18 and over

Trial IDs: SHP-141-003, NCI-2014-02164, NCT02213861


“Carfilzomib with or without Romidepsin in Treating Patients with Stage IA-IVB Cutaneous T-Cell Lymphoma”

Phase: Phase I

Type: Biomarker/Laboratory analysis, Treatment

Age: 18 and over

Trial IDs: NU 12H06, NCI-2012-01952, IST-CAR-532, SP0021927, STU00071042, NCT01738594

Tuesday, September 29, 2015



Gianni Bonadonna, MD, whose revolutionary research in combination adjuvant chemotherapy helped transform the treatment of both breast cancer and Hodgkin lymphoma, died Sept. 7, in Italy, at the age of 81.


His research has helped reduce morbidity and mortality for millions of patients after introducing adjuvant therapy at a time when radiotherapy and radical mastectomies were standard practice.


A widely revered, beloved, charismatic, and internationally acclaimed investigator, Bonadonna published over 550 papers and received numerous awards for his revolutionizing work. Until his death he chaired the Committee on Prospective Clinical Trials at the Istituto Nazionale dei Tumori, in Milan.


Although his early findings on the potential of early adjuvant therapies were not initially embraced by the oncology community in general, in the decades since, his and others’ research helped establish combination regimens that are today considered the optimal approach for treating many of these cancers.


In 1972, Dr. Bonadonna and his colleagues published preliminary findings in early trials among Hodgkin’s patients at Italian institute using a new combination chemotherapy regimen called ABVD (doxorubicin [Adriamycin], bleomycin, vinblastine, and dacarbazine). They determined that ABVD was more effective than the MOPP regimen (mustargen, oncovin, procarbazine, and prednisone), then the standard combination.


Developed in the 1960s at the U.S. National Cancer Institute by researchers that included Vincent T. DeVita, Jr., MD. MOPP was the first combination chemotherapy regimen to result in high success rates in Hodgkin’s disease and other blood cancers.


In 1973, Bonadonna and his colleagues published a groundbreaking study in the New England Journal of Medicine that demonstrated the effectiveness of combined chemotherapy using CMF (cyclophosphamide, methotrexate, and fluorouracil) for node-positive operable breast cancer. This was then confirmed in a 30-year follow-up review of treated breast cancer cases, published in 2005. That study showed that CMF, especially with the addition of prednisone (CMFP) significantly reduced the risk of recurrence and death.


Vincent DeVita

In an interview, DeVita, Director of the National Cancer Institute from 1980 to 1988 and now the Amy and Joseph Perella Professor of Medicine and Medical Oncology at Yale Cancer Center, remembered working with Bonadonna in the early years: “I first met him when he spent a week with us at the NCI Medicine Branch in 1969 going over the CMF protocol we had developed and modifying it for use as adjuvant chemotherapy in breast cancer.


“No one in this country would touch it at the time, but Gianni adopted it and ran the trial in Italy, with the NCI providing support. That 1976 trial, published in NEJM, rocketed him to fame.”


George Canellos

George P. Canellos, MD, the William Rosenberg Professor of Medicine at Harvard Medical School, who practices at Dana-Farber Cancer Institute, also recalled those days. At the time he was a clinical associate at the NCI, and from 1975 to 1995, he was Chief of Dana-Farber's Division of Medical Oncology; a former Editor-in-Chief of the Journal of Clinical Oncology and a past president of the American Society of Clinical Oncology, Canellos is currently a senior physician at Dana-Farber and Brigham and Women's Hospital, and was a major figure in the emerging field of adjuvant treatment while a visiting investigator in Milan.


“I first got to know Dr. Bonadonna when he came to the National Institutes of Health to see if the NCI was involved with adjuvant therapy for breast cancer. Indeed, we were in the process of completing a trial of combination chemotherapy for metastatic breast cancer in previously untreated women.”


Bonadonna’s proposed regimen of CMF and then CMFP was found to be very active in achieving remission of disease, Canellos said. “Dr. DeVita and I were in the process of compiling our data for review by the leadership and we hoped to use it to keep early breast cancer from metastasizing. At that time, however, the centers and other U.S. oncology groups were reluctant to participate.”


Today, adjuvant chemotherapy is a standard practice in treating breast cancer recurrence and metastases in many women undergoing therapy. 


The Early Years

Gianni Bonadonna was born on July 28, 1934, in Milan. After he graduated fromDopo la laurea in Medicina e chirurgia ottenuta presso l' Università di Milano nel 1959 si è perfezionato negli Stati Uniti per un triennio tra il 1961 e il 1964. Al suo rientro in Italia è stato assunto all'Istituto Nazionale dei Tumori dove ha svolto il resto della sua carriera. the University of Milan in 1959 with a degree in Medicine and Surgery he studied in the U.S. between 1961 and 1964. During his postdoctoral training from 1961 to 1964 he was a research fellow at Memorial Sloan Kettering Cancer Center, in New York. After returning to Italy he joined the Istituto Nazionale dei Tumori of Milano, where he stayed for the rest of his life. In 1976 he became the Director of Medical Oncology and in 1991 became the Head of Cancer Medicine at the Milan institute.


His work in adjuvent therapy for breast cancer and Hodgkin’s disease included the first trials of doxurubicin, bleomycin, and epirubicin. In subsequent years he was awarded many national and international honors.


Gianni Bonadonna Breast Cancer Award and Lecture

In recognition of his many contributions to cancer treatment, the American Society of Clinical Oncology in 2007 established the “Gianni Bonadonna Breast Cancer Award and Lecture.”


In announcing the creation of that award, ASCO then-President Gabriel Hortobagyi, MD, Professor of Medicine, in the Department of Breast Medical Oncology, the Nellie B. Connally Chair in Breast Cancer, and Program Director of the Susan G. Komen Interdisciplinary Breast Fellowship Program at the University of Texas MD Anderson Cancer Center, praised Dr. Bonadonna’s many contributions to the field of breast cancer treatment: Without Gianni Bonadonna’s initial work in demonstrating the activity of chemotherapy, we would not be where we are today in terms of the management and the cure of breast cancer,” he said.


“Bonadonna’s legacy is one of focus, persistence, passion, innovation, and creativity. That’s a tall order for most new members of our profession but clearly is a combination of attributes that make Dr. Gianni Bonadonna a role model for oncology professionals of the future.”


Gianni Bonadonna Hodgkin’s Disease Award and Lecture

His contributions to research in the field of Hodgkin lymphomas also was acknowledged by the Committee of the International Symposium on Hodgkin’s lymphoma in Cologne, Germany, where the organization created the “Gianni Bonadonna Hodgkin’s Disease Award and Lecture.”


Over the course of his professional career, in addition to his many research papers, he also wrote books aimed at lay readers, as well as a book on the Sepoy revolt in India, a rebellion in 1857 against the army of the East India Company, regarded as India’s first war of independence.


Unorthodox and Dedicated

In the interview with OT, Canellos also talked about Bonadonna’s many interests outside of his research pursuits: “Dr. Bonadonna was a very eclectic physician who enjoyed traveling to exotic places. He collected objects of art resulting in his home being almost a museum in itself.”


Similarly, DeVita said that by enthusiastically collaborating with other researchers around the world, Bonadonna gave breast cancer and Hodgkin’s disease what essentially amounted to a treatment makeover, and not just in terms of investigating adjuvant therapies: “He changed the practice of medical oncology in Italy by doing things they had not done before, like telling patients their diagnosis, and that CMF and CMFP were experimental treatments and asking patients for their informed consent. He also adopted rigorous precepts for clinical trials. This took a great deal of courage on his part, but paid off handsomely for Italian cancer patients.”


Bonadonna suffered a serious stroke in 1995, but continued to work toward improving treatment and practice. “He showed a different kind of courage; the courage of a severely disabled patient to continue to lead a productive life as founder and president of the Fondazione Michelangelo, remarking that with his disabilities he was better able to understand the pain his patients were experiencing,” DeVita said. "His approach to life in the face of adversity was an inspiration to us all.


“He was a good friend, and I always enjoyed his company. We shared a love of opera and were both always reduced to tears by Puccini's music during the last 12 minutes of the first act of La Bohème. I will miss him.”

Friday, September 25, 2015




WASHINGTON—Diagnostic errors are pervasive, and without concerted efforts they will get worse as U.S. health care delivery becomes more complex, according to a new report from the Institute of Medicine (IOM) of the National Academies of Science, Engineering and Medicine.


“Diagnosis sets the stage for subsequent decisions around the care of the patient,” said IOM President Victor J. Dzau, MD, speaking at a news briefing on the grounds of the National Academy of Sciences here. He said the comprehensive new report shows that diagnostic errors persist in all settings of health care, and “this cannot and must not continue.”


The report notes that diagnostic errors may cause adverse effects on patients by preventing or delaying appropriate treatment, providing unnecessary or harmful treatment, or resulting in psychological or financial hardships. In some cases, a wrong or delayed diagnosis can result in death.


Dzau praised the report, noting that it comes out 15 years after the influential “To Err Is Human: Building a Safer Health System” IOM report. That report, which estimated the number of U.S. deaths due to medical error at 100,000 per year, was “a wakeup call” for health care professionals, he said. Regarding the “Improving Diagnosis in Health Care” report, “this is now a second wakeup call in my mind.”


The document, which has 10 sponsors, gives specific recommendations to reduce medical errors (see below), including facilitating better teamwork in the diagnostic process among health care professionals, patients, and families, and ensuring that health information technologies (HIT) support a high-quality diagnostic process.


Diagnostic Error Defined

The committee that wrote the report defined diagnostic error as “the failure to (a) establish an accurate and timely explanation of the patient’s health problem(s) or (b) communicate that explanation to the patient.” Errors occur because of lack of professional and patient communication; lack of needed support and coordination in the health system; limited feedback to clinicians about diagnostic performance; and a culture that discourages transparency and reporting of errors.


The report recommends a robust process of voluntary, not mandatory, reporting of diagnostic errors to increase transparency, foster a learning health care system; and establish better data on the magnitude of the problem.



While data on diagnostic errors are sparse, the committee concluded that:

  • Most people will experience at least one diagnostic error during their lifetime;
  • Conservatively, five percent of U.S. adults who seek outpatient care each year experience a diagnostic error;
  • Postmortem examination research spanning decades has shown that diagnostic errors have contributed to about 10 percent of patient deaths;
  • Medical record reviews suggest that diagnostic errors account for six to 17 percent of hospital adverse events; and
  • Diagnostic errors are the leading type of paid medical malpractice claims, are almost twice as likely to have resulted in the patient’s death compared with other claims, and represent the highest proportion of total payments for malpractice claims.

'Quality-of-Care Issue'

Diagnostic error is a quality-of-care issue,” said John R. Ball, MD, JD, Chair of the report committee and Executive Vice President Emeritus of the American College of Physicians. “Diagnosis is not a simple linear process; it is complex,” added Ball, a former senior policy analyst in the Office of Science and Technology Policy, Executive Office of the President.


Ball emphasized that diagnostic error is “a significant but underappreciated health care challenge,” that patients themselves are central to the solution, and that diagnosis should be a collaborative effort. Today, he noted, the field of pathology, for example, is moving toward providing clinical support rather than just giving the answer to a particular diagnostic test. Indeed, he said, with the explosion of diagnostic tests, no single physician could ever decide alone which of them to use.


Declining Use of Autopsies

Ball decried the fact that autopsies have fallen off in the past 20 years, since they can reveal postmortem data about correct diagnoses. Health information technology (HIT), while it can be a boon, “is often a barrier to correct diagnosis in its current form,” cautioned Ball, former CEO of Pennsylvania Hospital as well as the American Society for Clinical Pathology. He said the IOM committee heard a lot about HIT, including the fact that it supports medical billing far more than it supports the diagnostic process. (The committee recommends that diverse health IT vendors meet interoperability standards by 2018.)


Praise for the Report from ASCO

The American Society of Clinical Oncology praised the new IOM report for drawing attention to important issues that affect oncologists: “We are particularly encouraged by IOM’s recommendation to require health IT vendors, by 2018, to meet standards for interoperability among different health IT systems so that effective, efficient, and structured flow of patient information across care settings can be supported,” ASCO Chief Medical Officer Richard L. Schilsky, MD, said in a statement.


“Cancer treatment is a complex undertaking that requires coordination of care and the exchange of detailed clinical information among multiple health care providers using different health information systems. Widespread interoperability for sharing electronic information is essential for optimal cancer care,” he said. “ASCO recently called on Congress to ensure the interoperability of electronic health records and to prevent the practice of information blocking.” 


Schilsky also praised the IOM report’s emphasis on teamwork and collaboration with pathologists and radiologists; on stressing partnerships between physicians and patients; and on reimbursing physicians adequately for their collaborative efforts.


‘A Systems Problem’

In today’s health care environment, “Diagnosis is a team process,” agreed IOM committee member George E. Thibault, MD, President of the Josiah Macy Jr. Foundation, Federman Professor Emeritus at Harvard Medical School, and former Vice President of Clinical Affairs at Partners Healthcare System in Boston. “Diagnostic errors can be and should be thought of as a systems problem.”


Therefore, he said, interdisciplinary education is an essential part of the education of health professionals.


Asked by OT if President Obama’s Precision Medicine Initiative, announced earlier this year, will likely improve the accuracy of medical diagnosis, Thibault said that improved testing will certainly improve diagnosis, but that it will also make the process of diagnosis more complex.


“There may be only one person in a hospital who understands a test; that’s why we have to work as a team.” No single physician can possibly know about all the molecular tests available, Thibault emphasized. “Also, many of the things we’re faced with clinically are not understood at the molecular level.”


“Physicians need to be open to feedback from their colleagues,” said another speaker, Christine K. Cassel, MD, President and CEO of the National Quality Forum, Adjunct Professor and Senior Fellow in the Department of Medical Ethics and Health Policy at the University of Pennsylvania School of Medicine, and former President and CEO of the American Board of Internal Medicine.


She noted that it should become second nature for a physician to pick up the phone and call another physician to share the knowledge that a patient has X diagnosis, not Y. Open-mindedness to hearing from other members of the health care team should be the norm, Cassel stressed.


Just One Sad Example…

The IOM report includes an example of a real patient who died because of a diagnostic error, the case of a man named Pat, who presented with neck pain, who had a mass on his cervical spine. The mass was removed by a neurosurgeon, who sent a tissue sample to a hospital pathologist while the operation was in progress. The pathologist reported back that it was an atypical spindle cell neoplasm. Assuming this meant a benign mass, the surgical team completed the operation and declared the patient cured.


But the pathologist did more tissue tests and determined that the mass was actually a malignant synovial cell sarcoma. Unfortunately, when this report was sent to the neurosurgeon 21 days after the surgery, it was somehow lost, misplaced, or filed without the neurosurgeon seeing it; neither Pat nor his referring clinician knew the mass was malignant. Following recurrence, Pat had another operation six months later. He ultimately had seven more surgeries, as well as chemotherapy and radiation. He died after two years of treatment at age 45, leaving a four-year-old daughter and six-year-old son. 




8 Recommendations

The IOM report makes the following eight recommendations:

            1.  Facilitate more effective teamwork in the diagnostic process among health care professionals, patients, and their families, including ensuring patient access to electronic health records and patient review of records for accuracy;

            2.  Enhance health care professional education and training in the diagnostic process, including competency standards set by certification and accreditation organizations;

            3.  Ensure that health information technologies (HIT) support health care professionals and patients in the diagnostic process, including a requirement on the part of the Office of the National Coordinator for Health Information Technology that all HIT vendors meet standards of interoperability by 2018;

            4.  Develop and deploy approaches to identify, learn from, and reduce diagnostic errors and near misses in clinical practice, including monitoring the diagnostic process and providing feedback to health professionals;

            5.  Establish a work system and culture that support the diagnostic process and improvements in diagnostic performance, including promoting a non-punitive culture that values open discussion and feedback on diagnostic performance;

            6.  Develop a voluntary reporting environment and medical liability system that facilitates improved diagnosis through learning from diagnostic errors and near misses--The Agency for Healthcare Research and Quality, one of the new IOM report’s sponsors, should evaluate the effectiveness of patient safety organizations as a major mechanism for voluntary reporting and learning from these events;

            7. Design a payment and care delivery environment that supports the diagnostic process, including providing reimbursement for time spent by pathologists, radiologists, and other clinicians in advising ordering physicians on the selection, use, and interpretation of diagnostic testing for specific patients; and

            8. Provide dedicated funding for research on the diagnostic process and diagnostic errors, including requiring federal agencies to develop a coordinated research agenda on the diagnostic process and diagnostic errors by the end of 2016.   

Thursday, September 24, 2015

To conclude – at least for now! -- our series of profiles of cancer care professionals discussing how they unwind during the summer (or other) months, we checked in with some oncology nurses and staffers. The surprise? They all volunteer many of their precious hours and days off to help others. Check out the entire series here, and you can also follow the tweets about the series here: #OTSummerVaca.




Beatriz Rozo, University of Texas MD Anderson Cancer Center

You'd think that Advance Nurse Practitioner Beatriz Rozo would want to put her feet up at the end of long workdays in the pediatric oncology division of The University of Texas MD Anderson Children's Cancer Hospital, in Houston. Instead, Rozo goes dancing. She is part of a Peruvian dance troupe called Raices Del Peru that's been together for more than three decades.


"It is the only Peruvian folkloric dance group in Houston," she says. "My family is from Peru and that's the dancing that I do. It has been something I've done since I was five years old. My parents and all my brothers and sisters were born in Peru and I was born here. My family is very Peruvian."


Rozo, whose mom is a social worker (and whose grandmother was also a nurse), says her parents are among the founders of Raices Del Peru. Her mom is the director and still very active in it.


"Anybody who is interested in Peruvian dance in Houston, somehow they get my mom's phone number."


For Rozo, Raices Del Peru is a family tradition she wants to pass on to her children. Her two daughters, ages seven and nine, now dance in the troupe, too. They practice every Friday night at a local Houston community center that lets the nonprofit organization use their facilities for free. They also perform at least once a month at community events or for private occasions, sometimes traveling to Dallas and other cities.


"We do quite a few wedding performances, especially in summer," says Rozo, who explains that the traditional Peruvian costumes are elaborate and performing in them can be very hot in the warmer months. "In Peru, we have mountains, coast, and jungle. There are very different costumes for each region, and the hairstyles and jewelry change, too."


Rozo says when she travels to Peru to visit relatives, she dances there, too. "When my family takes trips to Peru, my mom will sign us up for the dance academy there and we take it up to another level. We enjoy it as a family."


She says she cherishes the photos of herself and her children dancing with her dad and mom.


Raices Del Peru has a children's dance group, and Rozo volunteers as a teacher for their classes. "Most are my mom's grandkids," she laughs, noting that she has seven siblings.


The dance troupe also has a Facebook page. "That's how a lot of people find us. Or they find my mom through the local Peruvian association or the consulate," Rozo says.


"As we get older and busier and now with my family, it does get more difficult to commit to these kinds of responsibilities. I can't just sign up for a show, I have to practice, but it's something that I've made a priority."


Rozo says another perk of dancing during her time off is that it's a healthy way to shift gears and relax after work. "It's good-stress relief and a good workout, and family time."


She also enjoys sharing this other side of her life with her coworkers, who sometimes come to see her shows and cheer her on.


"We do get involved in some of each others' personal things and life outside of work. We do that for each other. It's nice. We do sometimes have to talk to parents about how their children will probably succumb to their disease--conversations we have to have more often than we want, so we definitely need things outside of work to help us."





Paulette Kelly, Memorial Sloan Kettering Cancer Center

Paulette Kelly, a pediatric oncology nurse at Memorial Sloan Kettering Cancer Center, spends her summers doing what she loves best – and exactly what she does every other day of the year – spending time helping kids with cancer.


Every July since 1995, Kelly has headed to northern New Jersey to volunteer at Happiness is Camping for Children with Cancer, a free-of-charge overnight summer camp for pediatric cancer patients and their siblings. She says that unlike regular summer camps for kids who have not had cancer, the million dollar facility provides a safe environment for immunocompromised children.


The grounds house built-in showers, heating, and a well-equipped medical facility where children can receive chemotherapy and pain management care, says Kelly, who first started helping at the camp as a nurse once a week 20 years ago. At that time, her own children were still little, four and six, so she brought them along, too.


"My son is now grown and his best friend is a friend from camp, a cancer survivor. They both grew up to become counselors at the camp. My daughter returns to camp now as a nurse. She is a pediatric oncology nurse at Sloan Kettering now, too, so this translated to a family affair."


In 2001, Kelly took over as the nursing director of Happiness is Camping, a month-long volunteer position, and she serves as a member of the board.


"I do policy and procedures, introduce it to new staff, and I'm the nurse staff recruiter – a recruiter who has to offer the nurses no pay behind it, and I have to ask them to go to Jersey for the camp where they have to apply for a New Jersey nursing license," says Kelly, chuckling.


The camp requires two to three nurses during any one-week session. Camp counselors are paid, but all of the doctors and nurses work there on a volunteer basis on their personal time.


The campers come from Memorial Sloan Kettering but also from other medical centers. "The kids there come from all over now, Montefiore, CHOP, Yale. This year, we had our largest population, 80 children each week. Out of those, two-thirds have cancer and one-third are siblings. We take the whole family in. It gives parents a respite. Some kids do two weeks and go home over the weekend in between," Kelly explains.


When it comes to the children's daily care at camp, Kelly says: "It's very much about palliation and wellness. We do whatever activities they can do to push their limits – zip lines, swimming, high ropes, arts and crafts, singing, dancing, nature, fishing, hikes –it runs the gamut."


Many inner-city kids attend and take swim lessons for the first time in their lives and become competent swimmers, she says.


The staff also helps the children develop friendships and helps them focus on personal development, because so many miss out on normal social activities at school due to their illness and medical-related absences. Kelly mentions one camper who was diagnosed at age three: "She turned 10 last year and was having poor function in her leg, which has growth pain issues. She wasn't building her life, but she came into camp and learned to climb rock walls, with appropriate pain medications and very good massages for her feet. She developed friendships last year and came back this year. You can see her talk about it on the camp Facebook page," says Kelly.


"Seeing kids with cancer live is my favorite part of camp. Cancer for me is not about death and dying or just treatment. It's about a chronic illness. Whether you live a lifetime of always coping with cancer or you pass away young, cancer is always about living well. I have seen many kids who come in and don't want to live life. We had this kid who lost his leg and I introduced him to my doctor friend. This kid went from drawing pictures of falling down stairs and he was going die to coming to camp and becoming a magician and going to medical school. He lived years and developed himself, and that moment at camp is why. That's why I go."


Kelly adds, "I see kids live again. Camp opens them up to a world of realizing, 'I'm not alone.' And they see there's hope even in death. My family is enriched by these children. Each of us takes home a new meaning of life and the power of living well."





Elaine Pottenger, Memorial Sloan Kettering Cancer Center

When pediatric oncology nurse Elaine Pottenger heads to Montana every July, she's not planning on doing any solitary hikes or nature watching. She travels with a group of teenage brain tumor survivors to attend Camp Mak-A-Dream


"It's the first time away from home for these teens who have very unique health issues," Pottenger says.


As a camp nurse, she leads daily cabin chats. "We talk about the challenges faced by teens with brain tumors – self-esteem, isolation, bullying."


She also runs a nutrition workshop that includes teaching a heart-healthy lifestyle. "We then bring the kids into the kitchen and they make their own food."


Pottenger also works in the camp wellness center managing the day-to-day medical needs of the kids, including giving medications, monitoring blood sugar levels, and providing intravenous hydration for those who need it.


"I have been lucky enough to be a part of this program for five years. The other health care providers, who come from other parts of the country, are not as experienced with this population, so I also help teach them about the unique needs of young brain tumor survivors," Pottenger explains.


Her favorite camp activity is hiking with the campers up the Butte, a nearby mountain. "Some never thought they could climb so high. It is a symbol of the struggles and achievements that face these teens."






Consuela Nance, Santa Monica Hematology/Oncology, UCLA’s Jonsson Comprehensive Cancer Center

Consuela Nance says she couldn't say no when a former patient, now in remission, asked for help with a charity event she was planning for the end of September.


Nance, a patient navigator lead at UCLA's Santa Monica Hematology/Oncology, says much of her free time this summer was spent coordinating plans for R2Cure, a fundraising event that benefits lymphoma research at UCLA.


"A lot of our patients come in on their last hope. We have a research department within our facility, and we have clinical trials and research studies here for different kinds of lymphoma. This particular event is to raise funds to help find cures for a less toxic therapy for lymphoma," Nance says.


R2Cure is held in Santa Monica at the art center Bergamot Station, and requires a team of volunteers to pull it off, she notes. While her day-to-day job is all about non-clinical crisis management for patients – including helping with bills, transportation, and guidance on how to navigate the medical system – her volunteer work for the fundraiser includes organizing a silent auction, a live auction, and a raffle.


"My team's goal has been to go out and get auction items that range from $100 and up. We were also looking into corporate sponsors for larger donations. We send out 4,000 invites and expect 200 to 300 guests," Nance says. To date, they've attracted some major hotel, restaurant, and corporate donors.


The fundraising event includes the viewing of a short documentary that features lymphoma doctors who talk about their specialty and how they're trying to find a cure for certain cancers, and guest speakers will include cancer survivors, caregivers, and doctors.


"The summer is really a short timeline to work within but we've done a lot on the weekends. We have a conference call after work once a week and speak to everyone, and figure out our timeline, who's doing what," says Nance, interviewed earlier this summer, noting that she had high hopes for a successful event, which also let people donate online