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 January/February 2014 A F O R U M F O R P H YS I C I A N A S S I S TA N T S

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Oncology Nurse Advisor VIRTUAL SUMMIT: BEST PRACTICES 3.5.14 | 3-6 PM EST SEE PAGE 46 for more information


Establishing a community survivorship care program



Addressing the unique support needs of BRCA gene mutation carriers The impact of weighing treatment options as prevention strategies can cause a different type of psychological stress

Too soon to say if soy is a promising adjuvant for radiotherapy


The waiting game


Nonpharma techniques can improve sleep in patients with cancer



Adjuvant endocrine therapy and alopecia

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Oncology Nurse Advisor (ISSN 2154-350X), January/February 2014, Volume 5, Number 1. P ­ ublished 6 times annually by Haymarket Media Inc, 114 West 26th Street, 4th Floor, New York, NY 10001. Oncology Nurse Advisor is available on a paid subscription basis at the following annual rates: USA $75, Canada $85, all other Foreign $110; Single copy price: USA $20; Foreign $30. To order, visit our Web site at www. or call (800) 558-1703. For advertising sales, call (646) 638-6000 (M-F, 9am-5pm, ET). Postmaster: Send changes of address to Oncology Nurse Advisor, P.O. Box 316, Congers, NY 10920. All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means electronic or mechanical, including photocopy, recording, or any information storage and retrieval system, without permission in writing from the publisher.

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January/February 2014

IN THE NEWS • Cancer deaths continue to decline • Out-of-pocket costs influence adherence to treatment • Navigator Notes: Cancer survivorship and health promotion FEATURES Establishing survivorship care in a community-based center Deb Ross, BSN, RN, OCN



Addressing the psychological impact of BRCA testing Rebecca McLamara, RN, OCN


STAT CONSULT Ofatumumab (Arzerra)


RADIATION & YOUR PATIENT Too soon to say if soy is a promising adjuvant for radiotherapy


Bryant Furlow






THE TOTAL PATIENT Nondrug interventions can effectively improve time to fall asleep and total sleep time Bette Weinstein Kaplan


More to come!


JOIN OUR COMMUNITY Submit a question to an oncology nurse advisor Have a question? Our panel of oncology clinicians is available to answer your questions. Submit questions to


FROM CANCERCARE Disclosing a diagnosis to children: Tell or not tell? Claire Grainger, LCSW


REFLECTIONS “Who called this code?” Aluem Tark, RN, BSN


Lisa A. Thompson, PharmD, BCOP


ONA asks… Answer our poll question and compare your opinions with those of your colleagues on key nursing issues at Subscribe to ONA newsletters

ASK A PHARMACIST Adjuvant endocrine therapy and alopecia


Answer the ONA poll question

FEATURES TCGA data allows better predictions for colorectal cancer Kathy Boltz, PhD

Nurse fatigue gets a wake-up call Dan Neel

STAT CONSULT Paclitaxel protein-bound particles (Abraxane) ISSUES IN CANCER SURVIVORSHIP Study shows pregnancy is possible for many female childhood cancer survivors

Stay current with daily news reports and special series from key oncology conferences on our Web site, sign up for our e-newsletters at Earn CE credits Each issue offers one new CE activity co-provided by the Nurse Practitioner Healthcare Foundation. Activities are active for 2 years. Socialize electronically Keep up with the oncology field through our social media. We’re on Twitter and Facebook. Now, we’re on Pinterest, too. Follow us!

Bette Weinstein Kaplan

VIDEOS Understanding targeted cancer therapies FACT SHEETS Cryosurgery in cancer treatment Biological Therapies for Cancer • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 7

IN THE NEWS THE AMERICAN CANCER Society (ACS) has published its latest annual report on cancer incidence and mortality, and the news is good. Cancer death rates have declined 20% over the past two decades. The overall cancer death rate peaked at 215.1 per 100,000 population in 1991; however, advances in prevention, early detection, and treatment, plus a significant trend toward smoking cessation brought that number down to 171.8 per 100,000 population in 2010. ACS estimates are based on the most recent data on cancer incidence, mortality, and survival from the National Cancer Institute (NCI) and the Centers for Disease Control and Prevention (CDC). Mortality data is culled from the National Center for Health Statistics. The report is published as “Cancer Statistics, 2014” in CA: A Cancer Journal for Clinicians (2014;64[1]:929) and its companion article, “Cancer Facts & Figures.” The report estimates 1,665,540 new cancer cases and 585,720 deaths in the United States in 2014. Prostate, lung, and colon cancers will account for approximately half of newly diagnosed cancers in men, with prostate cancer alone accounting for 27%

of cases; breast, lung, and colon cancers will account for approximately 50% of all cases among women, with breast cancer comprising 29% of new cancers. The four most prevalent cancers in both men and women—lung, colon, prostate, and breast cancers—account for approximately half of the total cancer deaths, with more than one quarter due to lung cancer. Trends in incidence Cancer incidence is 23% lower among women compared with men. But, the most recent 5-year period for which data are available (2006-2010) shows a decrease in cancer death rates for both sexes. Although incidence rates were stable in women, a decrease of 0.6% per year was seen in men. Improvements in cancer control and prevention contribute

The American Cancer Society report “Cancer Statistics, 2014” attributes the decline in cancer deaths largely to a reduction in lung cancer due to smoking, particularly among black men.

The largest declines in cancer deaths were among middle-age men and women, with black men age 30 years to 59 years showing the sharpest decline. 12 ONCOLOGY NURSE ADVISOR • JANUARY/FEBRUARY 2014 •

to the decline in incidence. For example, a decline of greater than 4% per year from 2008 to 2010 is attributed to increased use of colonoscopy, as the procedure also allows for removal of precancerous polyps. Despite the positive trends for the most common cancers, incidence rates for melanoma; esophageal cancer; cancers of the kidney, anus, and pancreas; and human papillomaviruspositive oropharyngeal cancers are increasing. The largest annual increases in both men and women are in cancers of the thyroid and liver. Trends in mortality An estimated 1,340,400 cancer deaths have been averted as a result of the decline in cancer deaths over the past 20 years. The largest declines in deaths were among middleage men and women, with black men age 30 to 59 years showing the sharpest decline (44%-55%). Tobacco use in older generations is a factor in the smaller declines seen in older persons. The decline in cancer death rates varied substantially by race and ethnic groups. Cancer incidence and death rates are highest in black men compared with white men and non-Hispanic white, Asian American/Pacific Island, American Indian/Alaska Native, and Hispanic men and women. The researchers conclude that expanding existing cancer control knowledge across all populations will lead to further decreases in cancer incidence and death rates. ■


Cancer deaths continue to decline


National Coalition of Oncology Nurse Navigators

Navigator Notes: Cancer survivorship and health promotion Survivorship has ben recognized as a distinct part of cancer care since the publication of the Institute of Medicine’s (IOM’s) 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition. The 5-year relative survival rate for all cancers diagnosed between 2001 and 2007 is 67%, compared with 49% for cancers diagnosed from 1975 to 1977.1 On January 1, 2012, 13.7 million Americans with a history of cancer were still alive, and that number is predicted to swell to 18 million.2 National Cancer Institute (NCI) statistics indicate that the number of patients cured of cancer and the number of those considered cured of the disease will increase, and many patients will survive multiple recurrences.3 What will your patients turn to you for as they continue through their survivorship journey? Health promotion and survivorship Health promotion is defined as the process of enabling people to increase control over their health and its determining factors, thereby improving their health.4 Cancer survivorship is defined as the span of time from diagnosis through the balance of the patient’s life.5 Cancer survivors may experience disease-related health issues such as organ damage and failure, infertility, premature aging, compromised immune system, and a damaged endocrine system; however, aging-related and other health problems may also emerge.6 Obesity, diabetes, dyslipidemia, menopause, osteopenia and osteoporosis, hypothyroidism, and hypertension are frequently reported.6 These comorbidities can occur as immediate, mid-range, or late-term issues,

and in addition to late- and long-term effects of treatment.7 Latencies of some side effects can be quite long, and not all survivors are affected; therefore, predicting a particular patient’s risk for side effects is difficult. Furthermore, patients may focus more on cancer recurrence than on other aspects of their health.8 Teachable moments Experts in the cancer community have described cancer as an event that causes changes in health behavior.9 The occurrence of cancer can be interpreted as a teachable moment, as patients may be more open to making lifestyle changes after a cancer event in an effort to prolong their survival. Oncology nurses are the ideal clinicians to engage patients in health promotion throughout the many stages of their treatment. Nurses’ multiple roles allow them to initiate important discussions about self-care and preventing recurrence, as well as comorbid conditions, at timely points in the patient’s journey. Availability and accessibility Studies of the health behaviors of cancer survivors indicate that clinicians need to stay engaged with their patients. For example, 20% of cancer survivors continue to smoke, and only 29% of cancer survivors meet the current recommendations for physical activity.10 Nurses have many opportunities to teach patients about these and other lifestyle modifications that can improve their risks. Modifiable risk factors that can reduce cancer incidence are tobacco use, obesity, poor diet, physical inactivity, alcohol abuse, unsafe sex and exposure to human papillomavirus (HPV), air Outside Front

pollution, indoor and/or secondhand smoke, and exposure to ultraviolet light.1 A wealth of resources The IOM’s report called for using evidence-based clinical guidelines to focus on the management of late side effects.11 The American Society of Clinical Oncology (ASCO), the National Comprehensive Cancer Network (NCCN), and other specialty organizations have developed specific guidelines. Other organizations have established clinical guidelines for several metabolic diseases that include guidance for cancer survivorship care, including the American Association of Clinical Endocrinologists (AACE); the American Diabetes Association; the National Heart, Lung, and Blood Institute (NHLBI); and the National Osteoporosis Foundation. Preventive measures for health risks are quite teachable, and several ACS publications offer self-help information on how to improve the risk from these factors. American Cancer Society reports provide clear guidelines and recommendations. Patients look to their nurses as credible health professionals for guidance and support. Programs for cancer survivors will vary from institution to institution, but nurses have a seat at the table for designing patient education and developing opportunities educate patients as they survive the cancer experience. ■ Go to the online version of this article at NavNotes0214 for the complete list of references. • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 13

Take a bite out of G-CSF acquisition costs* GRANIX is another option in short-acting G-CSF therapy TM

» GRANIX demonstrated a 71% reduction in duration of severe neutropenia (DSN) vs placebo1 – GRANIX significantly reduced DSN when compared to placebo (1.1 days vs 3.8 days; p<0.001)1 – Efficacy was evaluated in a multinational, multicenter, randomized, controlled, Phase III study of chemotherapy-naïve patients with high-risk breast cancer receiving doxorubicin (60 mg/m2 IV bolus)/docetaxel (75 mg/m2)1 *Based on wholesale acquisition cost (WAC) of all short-acting G-CSF products as of November 11, 2013. WAC represents published catalogue or list prices and may not represent actual transactional prices. Please contact your supplier for actual prices.

» Safety was evaluated in 3 Phase III clinical trials1


Important Safety Information (continued)

» GRANIX (tbo-filgrastim) Injection is a leukocyte growth factor indicated for reduction

» Use in patients with sickle cell disease: Severe and sometimes fatal sickle cell crises can occur


in the duration of severe neutropenia in patients with nonmyeloid malignancies receiving myelosuppressive anticancer drugs associated with a clinically significant incidence of febrile neutropenia.

in patients with sickle cell disease receiving hG-CSFs. Consider the potential risks and benefits prior to the administration of GRANIX in patients with sickle cell disease. Discontinue GRANIX in patients undergoing a sickle cell crisis.

» Potential for tumor growth stimulatory effects on malignant cells: The granulocyte colony-

Important Safety Information » Splenic rupture: Splenic rupture, including fatal cases, can occur following the administration of human granulocyte colony-stimulating factors (hG-CSFs). Discontinue GRANIX and evaluate for an enlarged spleen or splenic rupture in patients who report upper abdominal or shoulder pain after receiving GRANIX.

» Acute respiratory distress syndrome (ARDS): ARDS can occur in patients receiving hG-CSFs. Evaluate patients who develop fever and lung infiltrates or respiratory distress after receiving GRANIX, for ARDS. Discontinue GRANIX in patients with ARDS.

» Allergic reactions: Serious allergic reactions, including anaphylaxis, can occur in patients receiving hG-CSFs. Reactions can occur on initial exposure. Permanently discontinue GRANIX in patients with serious allergic reactions. Do not administer GRANIX to patients with a history of serious allergic reactions to filgrastim or pegfilgrastim.

stimulating factor (G-CSF) receptor, through which GRANIX acts, has been found on tumor cell lines. The possibility that GRANIX acts as a growth factor for any tumor type, including myeloid malignancies and myelodysplasia, diseases for which GRANIX is not approved, cannot be excluded.

» Most common treatment-emergent adverse reaction: The most common treatment-emergent adverse reaction that occurred in patients treated with GRANIX at the recommended dose with an incidence of at least 1% or greater and two times more frequent than in the placebo group was bone pain. Please see brief summary of Full Prescribing Information on adjacent page. For more information, visit Reference: 1. GRANIX TM (tbo-filgrastim) Injection Prescribing Information. North Wales, PA: Teva Pharmaceuticals; 2013.

©2014 Cephalon, Inc., a wholly-owned subsidiary of Teva Pharmaceutical Industries Ltd. GRANIX is a trademark of Teva Pharmaceutical Industries Ltd. All rights reserved. GRX-40137 January 2014.

Take a bite out of G-CSF acquisition costs* GRANIX is another option in short-acting G-CSF therapy TM

» GRANIX demonstrated a 71% reduction in duration of severe neutropenia (DSN) vs placebo1 – GRANIX significantly reduced DSN when compared to placebo (1.1 days vs 3.8 days; p<0.001)1 – Efficacy was evaluated in a multinational, multicenter, randomized, controlled, Phase III study of chemotherapy-naïve patients with high-risk breast cancer receiving doxorubicin (60 mg/m2 IV bolus)/docetaxel (75 mg/m2)1 *Based on wholesale acquisition cost (WAC) of all short-acting G-CSF products as of November 11, 2013. WAC represents published catalogue or list prices and may not represent actual transactional prices. Please contact your supplier for actual prices.

» Safety was evaluated in 3 Phase III clinical trials1


Important Safety Information (continued)

» GRANIX (tbo-filgrastim) Injection is a leukocyte growth factor indicated for reduction

» Use in patients with sickle cell disease: Severe and sometimes fatal sickle cell crises can occur


in the duration of severe neutropenia in patients with nonmyeloid malignancies receiving myelosuppressive anticancer drugs associated with a clinically significant incidence of febrile neutropenia.

in patients with sickle cell disease receiving hG-CSFs. Consider the potential risks and benefits prior to the administration of GRANIX in patients with sickle cell disease. Discontinue GRANIX in patients undergoing a sickle cell crisis.

» Potential for tumor growth stimulatory effects on malignant cells: The granulocyte colony-

Important Safety Information » Splenic rupture: Splenic rupture, including fatal cases, can occur following the administration of human granulocyte colony-stimulating factors (hG-CSFs). Discontinue GRANIX and evaluate for an enlarged spleen or splenic rupture in patients who report upper abdominal or shoulder pain after receiving GRANIX.

» Acute respiratory distress syndrome (ARDS): ARDS can occur in patients receiving hG-CSFs. Evaluate patients who develop fever and lung infiltrates or respiratory distress after receiving GRANIX, for ARDS. Discontinue GRANIX in patients with ARDS.

» Allergic reactions: Serious allergic reactions, including anaphylaxis, can occur in patients receiving hG-CSFs. Reactions can occur on initial exposure. Permanently discontinue GRANIX in patients with serious allergic reactions. Do not administer GRANIX to patients with a history of serious allergic reactions to filgrastim or pegfilgrastim.

stimulating factor (G-CSF) receptor, through which GRANIX acts, has been found on tumor cell lines. The possibility that GRANIX acts as a growth factor for any tumor type, including myeloid malignancies and myelodysplasia, diseases for which GRANIX is not approved, cannot be excluded.

» Most common treatment-emergent adverse reaction: The most common treatment-emergent adverse reaction that occurred in patients treated with GRANIX at the recommended dose with an incidence of at least 1% or greater and two times more frequent than in the placebo group was bone pain. Please see brief summary of Full Prescribing Information on adjacent page. For more information, visit Reference: 1. GRANIX TM (tbo-filgrastim) Injection Prescribing Information. North Wales, PA: Teva Pharmaceuticals; 2013.

©2014 Cephalon, Inc., a wholly-owned subsidiary of Teva Pharmaceutical Industries Ltd. GRANIX is a trademark of Teva Pharmaceutical Industries Ltd. All rights reserved. GRX-40137 January 2014.

BRIEF SUMMARY OF PRESCRIBING INFORMATION FOR GRANIX™ (tbo-filgrastim) Injection, for subcutaneous use SEE PACKAGE INSERT FOR FULL PRESCRIBING INFORMATION 1 INDICATIONS AND USAGE GRANIX is indicated to reduce the duration of severe neutropenia in patients with non-myeloid malignancies receiving myelosuppressive anti-cancer drugs associated with a clinically significant incidence of febrile neutropenia. 4 CONTRAINDICATIONS None. 5 WARNINGS AND PRECAUTIONS 5.1 Splenic Rupture Splenic rupture, including fatal cases, can occur following administration of human granulocyte colony-stimulating factors. In patients who report upper abdominal or shoulder pain after receiving GRANIX, discontinue GRANIX and evaluate for an enlarged spleen or splenic rupture. 5.2 Acute Respiratory Distress Syndrome (ARDS) Acute respiratory distress syndrome (ARDS) can occur in patients receiving human granulocyte colony-stimulating factors. Evaluate patients who develop fever and lung infiltrates or respiratory distress after receiving GRANIX, for ARDS. Discontinue GRANIX in patients with ARDS. 5.3 Allergic Reactions Serious allergic reactions including anaphylaxis can occur in patients receiving human granulocyte colony-stimulating factors. Reactions can occur on initial exposure. The administration of antihistamines‚ steroids‚ bronchodilators‚ and/or epinephrine may reduce the severity of the reactions. Permanently discontinue GRANIX in patients with serious allergic reactions. Do not administer GRANIX to patients with a history of serious allergic reactions to filgrastim or pegfilgrastim. 5.4 Use in Patients with Sickle Cell Disease Severe and sometimes fatal sickle cell crises can occur in patients with sickle cell disease receiving human granulocyte colony-stimulating factors. Consider the potential risks and benefits prior to the administration of human granulocyte colony-stimulating factors in patients with sickle cell disease. Discontinue GRANIX in patients undergoing a sickle cell crisis. 5.5 Potential for Tumor Growth Stimulatory Effects on Malignant Cells The granulocyte colony-stimulating factor (G-CSF) receptor through which GRANIX acts has been found on tumor cell lines. The possibility that GRANIX acts as a growth factor for any tumor type, including myeloid malignancies and myelodysplasia, diseases for which GRANIX is not approved, cannot be excluded. 6 ADVERSE REACTIONS The following potential serious adverse reactions are discussed in greater detail in other sections of the labeling: • Splenic Rupture [see Warnings and Precautions (5.1)] • Acute Respiratory Distress Syndrome [see Warnings and Precautions (5.2)] • Serious Allergic Reactions [see Warnings and Precautions (5.3)] • Use in Patients with Sickle Cell Disease [see Warnings and Precautions (5.4)] • Potential for Tumor Growth Stimulatory Effects on Malignant Cells [see Warnings and Precautions (5.5)] The most common treatment-emergent adverse reaction that occurred at an incidence of at least 1% or greater in patients treated with GRANIX at the recommended dose and was numerically two times more frequent than in the placebo group was bone pain. 6.1 Clinical Trials Experience Because clinical trials are conducted under widely varying conditions, adverse reaction rates observed in the clinical trials of a drug cannot be directly compared to rates in the clinical trials of another drug and may not reflect the rates observed in clinical practice. GRANIX clinical trials safety data are based upon the results of three randomized clinical trials in patients receiving myeloablative chemotherapy for breast cancer (N=348), lung cancer (N=240) and non-Hodgkin’s lymphoma (N=92). In the breast cancer study, 99% of patients were female, the median age was 50 years, and 86% of patients were Caucasian. In the lung cancer study, 80% of patients were male, the median age was 58 years, and 95% of patients were Caucasian. In the non-Hodgkin’s lymphoma study, 52% of patients were male, the median age was 55 years, and 88% of patients were Caucasian. In all three studies a placebo (Cycle 1 of the breast cancer study only) or a non-US-approved filgrastim product were used as controls. Both GRANIX and the non-US-approved filgrastim product were administered at 5 mcg/kg subcutaneously once daily beginning one day after chemotherapy for at least five days and continued to a maximum of 14 days or until an ANC of ≥10,000 x 106/L after nadir was reached.

Bone pain was the most frequent treatment-emergent adverse reaction that occurred in at least 1% or greater in patients treated with GRANIX at the recommended dose and was numerically two times more frequent than in the placebo group. The overall incidence of bone pain in Cycle 1 of treatment was 3.4% (3.4% GRANIX, 1.4% placebo, 7.5% non-US-approved filgrastim product). Leukocytosis In clinical studies, leukocytosis (WBC counts > 100,000 x 106/L) was observed in less than 1% patients with non-myeloid malignancies receiving GRANIX. No complications attributable to leukocytosis were reported in clinical studies. 6.2 Immunogenicity As with all therapeutic proteins, there is a potential for immunogenicity. The incidence of antibody development in patients receiving GRANIX has not been adequately determined. 7 DRUG INTERACTIONS No formal drug interaction studies between GRANIX and other drugs have been performed. Drugs which may potentiate the release of neutrophils‚ such as lithium‚ should be used with caution. Increased hematopoietic activity of the bone marrow in response to growth factor therapy has been associated with transient positive bone imaging changes. This should be considered when interpreting bone-imaging results. 8 USE IN SPECIFIC POPULATIONS 8.1 Pregnancy Pregnancy Category C There are no adequate and well-controlled studies of GRANIX in pregnant women. In an embryofetal developmental study, treatment of pregnant rabbits with tbo-filgrastim resulted in adverse embryofetal findings, including increased spontaneous abortion and fetal malformations at a maternally toxic dose. GRANIX should be used during pregnancy only if the potential benefit justifies the potential risk to the fetus. In the embryofetal developmental study, pregnant rabbits were administered subcutaneous doses of tbo-filgrastim during the period of organogenesis at 1, 10 and 100 mcg/kg/day. Increased abortions were evident in rabbits treated with tbo-filgrastim at 100 mcg/kg/day. This dose was maternally toxic as demonstrated by reduced body weight. Other embryofetal findings at this dose level consisted of post-implantation loss‚ decrease in mean live litter size and fetal weight, and fetal malformations such as malformed hindlimbs and cleft palate. The dose of 100 mcg/kg/day corresponds to a systemic exposure (AUC0-24) of approximately 50-90 times the exposures observed in patients treated with the clinical tbo-filgrastim dose of 5 mcg/kg/day. 8.3 Nursing Mothers It is not known whether tbo-filgrastim is secreted in human milk. Because many drugs are excreted in human milk, caution should be exercised when GRANIX is administered to a nursing woman. Other recombinant G-CSF products are poorly secreted in breast milk and G-CSF is not orally absorbed by neonates. 8.4 Pediatric Use The safety and effectiveness of GRANIX in pediatric patients have not been established. 8.5 Geriatric Use Among 677 cancer patients enrolled in clinical trials of GRANIX, a total of 111 patients were 65 years of age and older. No overall differences in safety or effectiveness were observed between patients age 65 and older and younger patients. 8.6 Renal Impairment The safety and efficacy of GRANIX have not been studied in patients with moderate or severe renal impairment. No dose adjustment is recommended for patients with mild renal impairment. 8.7 Hepatic Impairment The safety and efficacy of GRANIX have not been studied in patients with hepatic impairment. 10 OVERDOSAGE No case of overdose has been reported. ©2013 Cephalon, Inc., a wholly owned subsidiary of Teva Pharmaceutical Industries Ltd. All rights reserved. GRANIX is a trademark of Teva Pharmaceutical Industries Ltd. Manufactured by: Distributed by: Sicor Biotech UAB Teva Pharmaceuticals USA, Inc. Vilnius, Lithuania North Wales, PA 19454 U.S. License No. 1803 Product of Israel GRX-40189 January 2014 This brief summary is based on TBO-003 GRANIX full Prescribing Information.


FDA Update FDA approved revised prescribing information (USPI) and a communications REMS that allows ARIAD to resume marketing and distributing ponatinib (Iclusig). The USPI includes a revised indication statement and boxed warning, updated safety information, and recommendations regarding dosing considerations for prescribers. Ponatinib is now indicated for treatment of T315I-positive chronic myeloid leukemia (chronic phase, accelerated phase, or blast phase) or T315I-positive Philadelphia chromosome positive (Ph+) acute lymphoblastic leukemia, or chronic phase, accelerated phase, or blast phase chronic myeloid leukemia or Ph+ acute lymphoblastic leukemia for whom no other TKI therapy is indicated. The starting dose of ponatinib remains 45 mg daily. The combination therapy mekinist (trametinib) with Tafinlar (dabrafenib) received FDA approval for the treatment of unresectable or metastatic advanced melanoma. The drugs are used to block signaling in different sites of the same molecular pathway that promotes cancer cell growth. They are specifically indicated as a combination therapy in patients whose melanoma tumors express gene mutations BRAF V600E and V600K. ■

Out-of-pocket costs influence adherence to treatment MANY PATIENTS skip doses or stop taking medication entirely when their share of the costs becomes too high. Using data from health plan claims for the anticancer drug imatinib (Gleevec) filed between 2002 and 2011, Stacie B. Dusetzina, PhD, of the University of North Carolina School of Medicine in Chapel Hill, found that patients with higher copayments were 70% more likely to stop taking their cancer treatment and 42% more likely to skip doses. The study, published by the Journal of Clinical Oncology (2013; doi:10.1200/JCO.2013.52.9123), is one of the first to examine the effect of high out-of-pocket drug costs for targeted cancer therapies. The research team used health plan claims from privately insured adult patients age 18 to 64 years to examine the relationship between out-of-pocket costs and treatment


Patients with higher copayments were 70% more likely to stop taking their cancer treatment and 42% more likely to skip doses.


adherence. The data showed that insurance copayments for imatinib ranged from $0 to $4,792 for a 30-day supply, with the costs increasing over the study years. The data used in the study only included patients on employerbased plans. Most persons had low out-of-pocket costs—the most common cost was $30 for a 30-day supply—but copayments and coinsurance amounts required of patients varied substantially. The data has implications beyond imatinib. The cost of many new pharmaceuticals for rare conditions can cost insurers and patients more than $100,000 year. “Our results are particularly relevant for specialty pharmaceutical products, those that cost [more than] $10,000 a month, however, the lessons learned likely relate to any pharmaceutical product that has high out-of-pocket costs,” said Dusetzina. ■


Do your patients talk to you about the dietary supplements (soy, ginseng, etc) they may be taking while undergoing cancer treatment? Go online to answer our poll question. We’ll publish the results and a new question in the next issue. …AND YOU ANSWERED In the last issue, we asked which strategy you found most successfully minimizes barriers and misunderstanding when you educate your patients. 22%

45% 33%

Visual aids and plan language The teach-back method Summarize what my patient needs to know in a few key points • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 17

FEATURE | Establishing survivorship programs

Establishing survivorship care in a community-based center When should survivorship care begin? The definition of a cancer survivor and strategies for educating and engaging survivors in their care are explored.


Cancer survivor Anyone living with a history of cancer­­­—from the moment of diagnosis through the remainder of life



he American Cancer Society (ACS) published some astonishing numbers in its report, Cancer Treatment and Survivorship Facts and Figures 2012-2013. An estimated 13.7 million people in America are cancer survivors, and 59% of them are 65 years or older.1 This increasing population is in need of quality, evidence-based survivorship care. How to best serve this population with the resources available is challenging. When should survivorship care begin? This article explores the definition of cancer survivor and strategies for both informing patients and engaging them in their care. DEFINING SURVIVORSHIP The first Sunday in June is designated as National Cancer Survivors Day. Mercy Cancer Centers, in Toledo, Ohio, has hosted a Cancer Survivor Celebration for the past 9 years. To promote the event, we post and hand out flyers to our patients. After handing a flyer to one patient, he replied, “I don’t know that I am a survivor yet.” When does a patient with cancer become a survivor? A major controversy in oncology is how to define a cancer survivor. The National Cancer Survivors Day (NCSD) Foundation defines a cancer survivor as “anyone living with a history of cancer—from the moment of diagnosis through the remainder of life.”2 Understanding that survivorship is not the end of treatment or being disease-free for a designated period of time is crucial to developing a survivorship program. Continued on page 25


FEATURE | Establishing survivorship programs TABLE 1. Key elements of treatment plan and summary3 Treatment plan Diagnosis, including histology stage at original diagnosis Disease status Symptoms Physical manifestations Radiologic evidence Tumor markers Treatment purpose Treatment regimen

the health care team to ensure that the risk of long-term disability is minimized. Oncology nurses are on the front lines of survivorship for patients undergoing cancer treatment. The second and third phases, the transition from treatment to extended survival and long-term survival, are where most survivorship programs begin. Data from the treatment phase provide information for individualized patient management. “When treatment ends, you move into what has been called the neutral zone, which is characterized by feelings of chaos, loss, and confusion.”3 A separate survivorship visit is the ideal opportunity to provide useful information for maintaining health and identifying both the physical and emotional consequences of cancer and its treatment.

Drugs, route, frequency, toxicity


Re-evaluation strategy Timing Modality Summary How was the treatment tolerated? Hospitalization for toxicity Grade 3-4 toxicity Dose reductions Agents discontinued/stopped early What was the response to treatment? Disease-related symptoms Physical manifestations Radiologic evidence Tumor markers Reasons for treatment discontinuation Long-term sequelae of treatment Planned next steps

WHERE TO BEGIN Some larger institutions have late-effects clinics and other services that are tailored for patients who have completed therapy; however, community-based programs have limited resources. Cancer survival is divided into three separate phases.1 The first phase is from diagnosis to the end of initial treatment. Oncology nurses are most familiar with this phase. They educate patients about potential treatment-related morbidities and work with physicians to provide early identification and interventions. For example, recognizing the early signs of ototoxicity or neuropathy in a patient, then working with

The Institute of Medicine (IOM) provides guidelines for Survivorship Care Plans4 ( Table 1). These guidelines are a good starting point when deciding how your survivorship program will look. A detailed treatment summary that chronicles the initial diagnosis, staging, and types of treatment is the first component. Completing this portion can be tedious, but selecting a format for data collection makes the process smoother. The summary is also the place to document ongoing treatmentrelated toxicities, supportive services provided, and contact information for the treatment team. Different treatment summaries are available online; the American Society of Clinical Oncology (ASCO) offers a treatment summary on its Web site, The ASCO summary can be completed online and printed, or printed first and completed by hand. Another summary that can be completed online is available from Journey Forward ( This online tool needs to be downloaded to your computer, but it is another way to capture the necessary data. Some institutions prefer to create their own treatment summary. As long as the summary can be transferred into the medical record either by scanning or direct interface and captures the required elements, the origin is not important. A follow-up care plan is also required with the treatment summary. The care plan goes beyond just a schedule of follow-up appointments. The treatment summaries discussed adequately capture most of the information needed; however, they lacked a more in-depth look at long-term side effects and recommendations for healthy behaviors. LiveStrong Care Plans can be utilized to capture the remaining elements. The care plan is easy to access via the LiveStrong Web site ( and is a way to engage the patient in the survivorship visit. The care plan program asks a variety of questions related to the diagnosis and treatment, then uses • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 25

FEATURE | Establishing survivorship programs the data to compile a patient-specific care plan. The care plan can be printed in full or a health care provider summary can be printed and scanned for the medical record. The survivorship visit can generate referrals to resources within your facility and through community agencies. For example, a patient with lung cancer may be referred to your facility’s physical therapy program for ongoing issues with fatigue and also to a community-based cancer support group. In a nonrandomized study, 337 cancer survivors were asked to identify their extreme concerns.5 Table 2 lists the most frequently identified extreme concerns of the respondents. During the survivorship visit, the patient and family should be given the opportunity to ask questions and voice concerns. Identifying needs and connecting patients to services is part of care coordination in survivorship. STEP ONE: THE IDEAL TIME The published literature provides little direction in regard to the timing of the survivorship visit. Many programs choose a time after the acute effects of treatment have subsided. Depending on the therapy, 2 to 3 months allows for adequate recovery from the short-term side effects of treatment and identification of ongoing toxicities. However, a survivor who is even 6 months or 6 years posttreatment can still benefit from this service! It is never too late to review the current issues a patient is facing and provide a treatment summary. Furthermore, new strategies for managing long-term and late effects of treatment seem to emerge daily. Providing both information and support can give patients a sense of security at the end of treatment, when the frequency of visits declines quickly. A mechanism for scheduling survivorship visits for patients completing treatment helps assure that patients are not missed. STEP TWO: THE RIGHT PERSON FOR THE ROLE Larger cancer centers may have a multidisciplinary survivorship team, but smaller centers may need to identify the appropriate personnel for the survivorship visit. Community centers usually have lower patient volumes and less access to patient resources within their facility. Unlike larger centers, they are not likely to have specialty clinics; every diagnosis is treated in the same center. Oncology nurses are well equipped to take the helm of the survivorship visit.6 They understand the sequelae of both the disease process and the treatment for cancer; however, both registered nurses and advanced practice nurses can fulfill the role with the right tools. Survivorship care may become a primary role or can be assigned along with other responsibilities. Two or more nurses may share the role. In our center, breast cancer is a large percentage of our patient population. Due to the multifaceted treatment they receive

TABLE 2. Extreme concerns of cancer survivors4


Percent of ­respondents with the concern

Fear of recurrence


• Fatigue • Financial concerns


• Concerns about long-term effects of treatment • Peripheral neuropathy • Sexual issues


• Debt from medical bills • Hot flashes • Osteoporosis and bone health


• Living with uncertainty • Loss of strength • Health insurance • Hair and skin issues


and their protracted course of therapy, survivorship is a key component of their care.7 Our nurse navigator provides the survivorship visits for this group, and the nurse who provides chemotherapy education sees the remaining patients. STEP THREE: COLLECT THE TOOLS NECESSARY IOM developed a condensed fact sheet, Cancer Survivorship Care Planning, that defines the essential components of the care summary and follow-up plan.8 The fact sheet summarizes the information in their book and can be used as a checklist when selecting documentation tools. For those programs accredited by the American College of Surgeons using the Commission on Cancer (COC) Standard, the IOM Fact Sheet can be used to determine compliance with Standard 3.3: Survivorship Care Plan.9 The treatment summary from either ASCO or Journey Forward captures the majority of the information regarding treatment and follow-up necessary to meet the IOM Standards of Care. Elements such as long-term and late effects are not captured; however, incorporating a second care plan, such as the LiveStrong plan, can bridge the gaps. For example, two potential late effects for a patient who received radiation therapy to the mediastinum for Hodgkin lymphoma are breast cancer or skin cancer in the radiated field. Making sure the patient is receiving comprehensive and evidence-based information is important. The COC Standard does not stop at providing patient information. The COC wants to see that the program is monitored, evaluated, and presented to the Commission. Giving patients an evaluation form to complete at the end of the survivorship visit can provide valuable feedback and be used in the overall evaluation process.


STEP FOUR: CONDUCTING THE SURVIVORSHIP VISIT Approximately 1 hour should be allotted for each survivorship visit. This allows for adequate time to review the information and answer questions. The survivorship visit should be conducted in an area that ensures privacy. Computer access may be necessary depending on the tools that are utilized. The treatment summary should be completed prior to the visit because it requires researching the patient record. The summary often generates questions about tumor markers and staging. Many teaching opportunities arise from survivorship visits. Often, questions arise that are better answered by the patient’s primary care provider or another specialist. A form for listing these questions can be helpful, and the patient has a written record to take to future appointments. If an interactive electronic care plan such as LiveStrong is used, the patient answers the questions on a computer screen (sometimes with nurse assistance), and a care plan individualized to the patient’s disease site and treatment type is generated including the following information. • Side effects related to therapy • Potential late effects of treatment • Healthy lifestyle information • Follow-up care • Ongoing cancer screening Referrals to community agencies or supportive services are frequently given at the survivorship visit. The Cancer Legal Resource Center can help address questions regarding employment and/or insurance. The Center has a website ( and a toll free phone number (1-866-843-2572). At the end of the visit, patients receive a folder containing copies of their documents. In addition to the evaluation form,

patients also receive a copy of the National Cancer Institute (NCI) booklet, Facing Forward, Life After Cancer Treatment. Patients are encouraged to review the table of contents and read the sections that apply to them. They are also encouraged to write down any questions that come to mind while reviewing the information. A separate form is provided on which to record their questions.

Jen Discher, Director of Pastoral Care (left), and Beverly Vasko, a survivor of brain cancer

The author Deb Ross, Blackie Scott, and her daughter, Suzanne Holley (left to right)


THE IMPORTANCE OF REHABILITATION Cancer patients often report changes in their physical and functional ability during and after treatment. Instead of simply expecting patients to accept a new normal, incorporate available speech, occupational, and physical therapies to help them maintain and improve their function. Early identification of patient needs is important to minimize long-term disability. For example, a therapist may not be able to eliminate chemotherapy-induced neuropathy but can instruct the patient on adaptive techniques and equipment that help maintain normal activities. Educating the health care team about the benefits of rehabilitation can be accomplished through a variety of means. The Survivorship Training and Rehab (STAR) Certification Program ( is an avenue for educating both staff members and therapists. The staff receives information about which patients are appropriate for rehabilitation, and therapists receive instruction on the latest therapies. A physician with cancer who realized gaps in her care kept her from maintaining optimal function developed the program. A cost is associated with becoming a STAR Certified Program, but improved patient outcomes justify the cost. Beverly, who had a brain tumor, experienced difficulty with gait and balance toward the end of her treatment. She • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 27

FEATURE | Establishing survivorship programs was one of the first patients referred to the STAR program at our center. With physical therapy, she was able to improve her function and maintain an active lifestyle.

are keys to developing effective, individualized survivorship plans. Oncology nurses, with the right tools, are well equipped to provide survivorship care for their patients. ■

ENGAGE PATIENTS IN THEIR CARE The concept of survivorship is difficult to grasp not only for health care providers. Finding creative ways to educate patients about survivorship can be equally challenging. We held an annual Cancer Survivor Celebration for 6 years before a survivorship program existed. The Celebration is open to anyone with a cancer diagnosis regardless of when or where they were treated. Survivors are encouraged to bring a support person as their guest. The Celebration features a keynote speaker and local survivors who share their stories. Local agencies whose services support cancer survivors are invited to display at the event and provide information for attendees. Evaluations from the event identify educational needs of survivors and provide direction for future programs. Examples of these include “chemo brain,” fear of recurrence, sexuality, and nutrition/exercise. An evaluation of our 2012 program requested a speaker who survived ovarian cancer. In response, we featured Blackie Scott, a nationally known speaker and author, at this year’s Celebration. Scott is also a survivor of breast cancer and ovarian cancer. Messages of hope from those who shared their cancer experience are powerful and encouraging. They remind patients that they are not alone.

Deb Ross is the education coordinator at Mercy Cancer Centers in Toledo, Ohio. REFERENCES 1. American Cancer Society. Who are cancer survivors? In: American Cancer Society. Cancer Treatment & Survivorship Facts and Figures: 20122013. Atlanta, GA: American Cancer Society; 2012. 2. About National Cancer Survivors Day. National Cancer Survivors Day Web site. Accessed January 31, 2014. 3. Katz A. After You Ring the Bell… 10 Challenges for the Cancer Survivor. Pittsburgh, PA: The Oncology Nursing Society; 2012. 4. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006. 5. Ness S, Kokal J, Fee-Schroeder K, et al. Concerns across the survivorship trajectory: results from a survey of cancer survivors. Oncol Nurs Forum. 2013;40(1):35-42. 6. Grant M, Economou D, Ferrell BR. Oncology nurse participation in survivorship care. Clin J Oncol Nurs. 200;14(6):709-715. 7. Ganz PA, Hahn EE. Implementing a survivorship care plan for patients with breast cancer. J Clin Oncol. 2008;26(5):759-767. 8. Institute of Medicine. Cancer survivorship planning fact sheet. http:// Accessed


January 31, 2014.

Survivorship is an important component of cancer care. Recognizing the impact of the disease and its treatment


9. Commission on Cancer. Program Standards 2012, Version 1.2: Ensuring Patient-Centered Care. Chicago, IL: American College of Surgeons; 2012.

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FEATURE | BRCA mutation carriers

Addressing the psychological impact of BRCA testing A genetic predisposition to cancer is not the same as having cancer. Support for patients with the BRCA gene mutation should meet these unique needs.


Caption here like this one here like so.



ncology nurses are most often addressing an affected cancer patient when discussing treatment options. In the realm of genetics, however, often the same organizations that treat persons with cancer also address the needs of persons with a genetic mutation, or a hereditary predisposition to developing cancer: a previvor. But what is a cancer previvor? FORCE (Facing Our Risk of Cancer Empowered), a national nonprofit organization dedicated to support and advocacy for persons at high risk for hereditary breast and ovarian cancers, defines a previvor as “a survivor of a predisposition to cancer.”1 The risk of breast cancer for carriers of the BRCA gene mutation is up to 84%, compared with 8% for persons without the genetic mutation.2,3 A person whose risk for cancer is associated with a diagnosed genetic mutation would be considered a previvor. Considering the difference between survivorship versus previvorship, the psychological distress of previvors could be distinctly different from that of survivors. The impact of weighing treatment options for a known cancer, or a history of cancer, may be different from the impact of weighing those same options as prevention strategies. For example, a woman who does not have cancer would be considering a radical procedure such as a bilateral oophorectomy. In effect, she will go into the surgery for the most part as a well person, but soon afterward, she will experience all the issues that come with menopause. Continued on page 30 • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 29

FEATURE | BRCA mutation carriers TABLE 1. Quality of life of BRCA mutation carriers QoL scale




Well-being (emotional)

80.0 ± 2.6

70.6 ± 2.3a

74.0 ± 2.21a


93.1 ± 2.4

84.1 ± 4.0a

75.6 ± 6.0a

Physical functioning

89.3 ± 4.8

91.9 ± 2.1

85.1 ± 3.4


95.5 ± 2.1

92.0 ± 3.02

70.3 ± 6.5a,b


86.9 ± 3.3

84.6 ± 2.69

74.6 ± 3.8a,b

General health

79.3 ± 2.7

69.9 ± 2.6a

67.7 ± 2.6a

Social functioning

89.7 ± 2.7

83.5 ± 2.6

80.0 ± 4.0


62.8 ± 3.3

54.3 ± 2.6

52.2 ± 3.6a

Key: QoL, quality of life. 


P<.05 Controls 


P<.05 Previvors


Guilt and grief can also be associated with the diagnosis of a genetic mutation. Women, often in the position of caregiver and care promoter, are now confronted with the associated cancer potential not just for themselves, but their sisters, brothers, children, and other family members as well. However, other sources of psychological distress may also be factors in quality of life (QoL) for previvors. An interesting point to consider is whether these sources of distress are different from those of BRCA-positive cancer survivors, or do the two groups of mutation carriers experience similar amounts of psychological distress. While developing a genetics program, we considered a few issues voiced by BRCA mutation previvors. One issue was referrals to cancer support groups as a source of support. The women expressed feeling out of place in those support groups and not able to voice concerns with cancer survivors, as they had not had cancer. Another issue articulated was frustration with making treatment decisions. The previvors stated many times that they were not prepared for the side effects of preventive surgery and the impact of those side effects on their relationships. QUANTIFYING DISTRESS In a study by the Center for Genetics and Hereditary Disease at Celebration Health, data were collected on the psychological needs of BRCA mutation carriers via surveys during the 2012 annual FORCE Conference. Surveys used were the Rand 36-Item Health Survey, Beck Anxiety Inventory (BAI), General Practice Physical Activity Questionnaire (GPPAQ), and a general questionnaire, as well as anthropometrics and a 3-day food diary. Other issues studied in relation to psychological well-being included vital signs, sleep, sex life, and associated impediments (ie, vaginal dryness,

reduced desire, and poor body image). The participants were given all the survey results in an information packet the same day they took the surveys as well as information on healthy lifestyles and disease prevention. A total of 107 people were included in the study: 36 survivors of breast and ovarian cancers who had the BRCA mutation, 45 previvors with the BRCA mutation, and 26 controls with no history of cancer or BRCA mutations. In the domains associated with physical functioning, the cancer survivors reported a statistically significant decrease in quality of life compared with previvors and the control group ( Table 1). Both groups of BRCA mutation carriers had a significantly greater level of anxiety than the control group (P<.0001). Emotional distress was also more prevalent in the BRCA mutation carriers than in the control group, as evidenced by their lower scores (P=.02) on the SF-36 emotional scales. Significant effectors of psychological status (P<.05) included BRCA mutation diagnosis, quality of sex life, and presence of associated impediments. These findings were consistent with the consensus of focus groups that took place during the FORCE Conference. Participants expressed anxiety and lower emotional status. Findings from the study support concerns voiced by BRCA mutation carriers. Continued assessment of quality of life in BRCA mutation carriers is essential.4,5 Due to the significant decrease in cancer risk by many of the hereditary breast and ovarian cancer (HBOC) risk-reducing strategies, a strong argument can be made for BRCA testing. However, health care providers must also consider the emotional toll the decision to undergo testing, and the potential diagnosis, take on patients and their families. Providing adequate information

Resources for patients These Web sites provide information, support, and resources that address the specific needs of patients with a genetic or hereditary predisposition to cancer. FORCE Facing Our Risk of Cancer Empowered Bright Pink Myriad


In addition to referrrals for support organizations, these patients need referrals for genetic counseling and behavioral health counseling. prior to and after testing is the responsibility of anyone who recommends genetic testing. Genetic counselors should be consulted to ensure appropriate counseling is given to anyone who is considering testing or learning to cope with the results. Previvors and cancer survivors with BRCA gene mutations have greater psychological distress (lower emotional QoL, higher anxiety) than do people who do not carry the mutation.4,5 CONCLUSION A diagnosis of BRCA gene mutation has an adverse effect on psychological well-being. Nurse coordinators for patients who are BRCA mutation carriers need to consider the unique psychosocial needs of these patients. In addition to referrals to national and local support organizations and techniques for stress reduction, these patients need referrals for genetic counseling and behavioral health counseling. Nurse coordinator support is invaluable to community physicians as well. Providing physicians with information on community resources and engaging them to ensure patient access to a nurse coordinator are important for maximizing support for patients with the BRCA mutation. Although physicians may understand the unique needs of these patients, they may not know where to direct patients to meet those support needs. Outreach to physicians, hospital staff, and the community are an intricate part of the coordinator role,

y case stud

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insoming, chest pain, breath, wheez const ipation, mild the sion, falls during nia, confu lower extrem ities, and ed multiple three of the had sustain edema in the ng. . In describing encing a past month difficulty walki inatio n findin gs with reported experiin on him CASE ar-old man g cal exam heart falls, Mr. N. 45-ye closin Hg; a Physi e ion was mm sensat Mr. N. 100/70 renal diseas off just tunnellike end-stage and regular; included BP, ipe “clamping a histor y of ing dialysis three times per minute and his windp down.” His girlfriend rest and 90% rate, 78 beats (ESRD) receiv had been a patient in ion, 92% at rate, before he went that his lips were blue oxygen saturat respiratory for the past per week and lation; and reported noting ng. She dialed 9-1-l care clinic mucosa was with ambu gurgli e the trauma the palliative minute. Oral and he was Mr. N. becam had gone to 24 breaths per no masses were noted his airway. ) 3 days d and 2 years. He (TEC opene and arrived and adenopathy ency center dry, pink, paramedics out and and emerg . No lymph responsive after having passed ess of in the throat patient was alert and oxygen. ed a earlier after The administered ess and shortn time, and histor y includ was noted. , place, and reported dizzinLaboratory tests from Mr. N.’s socialof smoking 1.5 packs ed to person sed affect. ). , orient y (SOB depres globin l breath s with 32-year histor day and past alcoho included hemo results mildly anxiou he was cachetic, and per test the TEC visit pale, of cigarettes no current use. Other extremity decrease from (9.9 g/dL); His skin was 7.7 g/dL, a Bilateral lower mphetaddiction with weeks earlier appeared ill. Cardiovascular rate and included metha Mr. N. which was obtained 2 2+. ns. past drug use 4.4 mg/d L, edema was hallucinoge this patient; creati nine, shortness of amines and al limits for ed increasing mL, which within norm also report 500 ng FEU/ e and d-dimer, be inconclusive becaus to right his on was deemed had a bruise two units the patient He was given rib cage area. red cells (RBCs) and of packed blood with instructions home to discha rged testing and Hemoccult clinic for to perfor m palliative care return to the Mr. follow-up. from the TEC, Per instructions ive care clinic for palliat N. was at the His girlfriend of many the follow-up. him because she had years was withfall on the day he pre’s neck of the patient radiographs witnessed the she was conor and lateral TEC, and A R 27 Anteroposteri sented to the ic episode. FIGuRe 1. NURsE Adviso the syncop • oNcologY cerned about y revealed that Mr. N. RUARY 2011 • JANUARY/FEB subjective histor MArciA M.


along with developing relationships with genetic counselors, social workers, therapists, and other psychological support specialists. Through these efforts, a safety net of support can be woven to help patients with the BRCA mutation make informed care decisions and address the effects on themselves and their families of their decisions. The psychological stressors these patients experience should be acknowledged to ensure adequate access to support. Any health care provider who recommends genetic testing should understand these psychological stressors and plan for interventions that address the issues and impediments that can reduce patients’ psychological quality of life. ■ Rebecca McLamara is the survivorship and genetics coordinator at Global Robotics Institute at Florida Hospital Celebration Health in Celebration, Florida. REFERENCES 1. What is a previvor? FORCE: Facing Our Risk of Cancer Empowered Web site. Accessed January 31, 2014. 2. Ford D, Easton DF, Stratton M, et al. Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am J Hum Genet. 1998;62(3):676-689. 3. King MC, Marks JH, Mandell JB; New York Breast Cancer Study Group. Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science. 2003;302(5645):643-646. 4. Beran TM, Stanton AL, Kwan L, et al. The trajectory of psychological impact in BRCA1/2 genetic testing: does time heal? Ann Behav Med. 2008;36(2):107-116. 5. Wenzel L, Osann K, Lester J, et al. Biopsychological stress factors in BRCA mutation carriers. Psychosomatics. 2012;53(6):582-590.

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Ofatumumab (Arzerra) Drug type

• CD20-directed cytolytic monoclonal antibody


• Indicated for the treatment of patients with chronic lymphocytic leukemia (CLL) refractory to fludarabine and alemtuzumab (Campath) ——There is no data that demonstrates an improvement in disease-related symptoms or increased survival with the use of ofatumumab

——Dose 3 through 8: 2,000 mg, once weekly for six doses ■■ Initiate infusion at 50 mg/h ■■ Dose 9 administered 4 weeks after dose 8 ——Dose 9 through 12: 2,000 mg every 4 weeks ■■ Initiate infusion at 50 mg/h Pregnancy and lactation

• Ofatumumab binds to the CD20 molecule on normal B lymphocytes and on B-cell chronic lymphocytic leukemia, resulting in B-cell lysis • Possible mechanisms of cell lysis include complementdependent cytotoxicity and antibody-dependent, cellmediated cytotoxicity

• Pregnancy category C ——Should be used during pregnancy only if the potential benefit to the mother justifies the potential risk to the fetus. • Lactation ——Unknown whether distributed in breast milk ■■ However, human IgG is secreted in human milk ——Breastfeeding not recommended during therapy

Dosage and administration


• Recommended dosage and schedule (12 doses) ——Premedication ■■ 30 minutes to 2 hours prior to each dose ■■ Oral acetaminophen: 1,000 mg ■■ Oral or IV antihistamine (cetirizine [Zyrtec, generics] 10 mg or equivalent) ■■ IV corticosteroid (prednisolone 100 mg or equivalent) • Administration ——Dose 1: 300 mg (initial dose) ■■ Initiate infusion at 3.6 mg/h ■■ Next dose administered 1 week later ——Dose 2: 2,000 mg ■■ Initiate infusion at 24 mg/h ■■ Next dose administered 1 week later

• Infusion reactions ——Occur more frequently with the first two infusions ——Premedicate with acetaminophen, an antihistamine, and a corticosteroid ——Stop the infusion for any infusion reactions of any severity • Tumor lysis syndrome ——Administer aggressive intravenous hydration and antihyperuricemic agents, correct electrolyte abnormalities, and monitor renal function • Cytopenias ——Monitor CBC and platelet counts at regular intervals during therapy

Mechanism of action

Continued on page 40


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STAT CONSULT • Hepatitis B virus (HBV) reactivation ——Screen all patients for HBV infection by measuring hepatitis B surface antigen and hepatitis B core antibody before initiating treatment • Hepatitis B virus infection ——Monitor patients for clinical and laboratory signs of hepatitis • Progressive multifocal leukoencephalopathy ——Consider PML in any patient with new onset of or changes in pre-existing neurologic signs or symptoms • Intestinal obstruction ——Evaluate if symptoms of obstruction such as abdominal pain or repeated vomiting occur • Immunizations ——Do not administer live viral vaccines to patients who have recently received ofatumumab Adverse effects

• Most common adverse reactions (≥10%) ——Anemia, bronchitis, cough, diarrhea, dyspnea, fatigue, nausea, neutropenia, pneumonia, pyrexia, rash, and upper respiratory tract infections • Most common serious adverse reactions (≥10%) ——Infections (pneumonia and sepsis), neutropenia, pyrexia Drug interactions

• No formal clinical assessments of drug interactions with ofatumumab have been conducted. What to tell your patient

• Your doctor has ordered the anti-cancer medicine, ofatumumab, to help treat your illness. • Ofatumumab is used for the treatment of CLL refractory to fludarabine and alemtuzumab therapy. • This medication is only given intravenously. • Periodic blood counts will be needed for proper monitoring while receiving ofatumumab • Avoid vaccination with live viral vaccines while actively

receiving ofatumumab therapy • You should not plan to have children while receiving chemotherapy or for a while after treatments. ——No adequate information is available on the shortand long-term effects of exposing the unborn child to ofatumumab • Do not breastfeed while you are taking ofatumumab • Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. • Tell your doctor or nurse if you notice any of the following ——Signs and symptoms of infusion reactions including fever, chills, rash, or breathing problems within 24 hours of infusion ——Bleeding, easy bruising, petechiae, pallor, worsening weakness, or fatigue ——Signs of infection including fever and cough ——Symptoms of hepatitis (worsening fatigue or yellow discoloration of skin or eyes) ——New neurologic symptoms ■■ Confusion ■■ Difficulty talking or walking ■■ Dizziness or loss of balance ■■ Vision problems ——New or worsening abdominal pain or nausea • Ofatumumab may cause other side effects. Call your nurse or doctor if you have any unusual problems while using this medication. • You should keep a written list of all of the prescription and nonprescription (over-the-counter) medicines you are taking, as well as any products such as vitamins, minerals, or other dietary supplements. ——You should bring this list with you each time you visit a doctor or if you are admitted to a hospital. ——This list is also important information to carry with you in case of emergencies. ■ Prepared by Ashley Purohit, PharmD.




Curcumin as a means of cancer prevention

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Evaluating and treating cancer pain

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Too soon to say if soy is a promising ­adjuvant for radiotherapy Bryant Furlow New preclinical findings appear to bolster the case that a mixture of dietary plant estrogens derived from soybeans could prove to be a promising treatment adjuvant, reducing radiation toxicity and even possibly enhancing antitumor efficacy. Soy supplementation appears to be safe and headlines about soy compounds will increase cancer patients’ interest in the dietary supplements, but clinical trials are needed.


espite important advances in external-beam radiotherapy targeting that allow higher tumor doses with less irradiation of healthy, nontarget tissues, radiationassociated toxicities continue to limit

radiotherapeutic benefits for many cancer patients through dose limitation and treatment disruptions.1-3 This has sparked a search for radiosensitizing and radiation-protective or mitigating agents that can increase tumor susceptibilities or help protect patients’ other tissues from acute and chronic radiation-associated toxicities.2,3 Hillman and colleagues investigated soybean isoflavones as a potential treatment that can both radiosensitize tumors while mitigating radiation toxicity in healthy tissues.1,4,5 Soy isoflavones are plant estrogens, first recognized as potential cancer chemopreventive agents by epidemiologists studying dietary intake and cancer risks.1,6,7 These naturally occurring drugs are protein tyrosine kinase inhibitors (TKIs), estrogen receptor activators, and antioxidants.2,8 Early studies identified genistein as a particularly interesting soy isoflavone candidate for enhancing radiotherapy in preclinical models by upregulating tumor cell apoptosis (cell-suicide) gene pathways.9 Importantly, when administered alone, pure genistein increased lymph node metastasis.9,10 But the role of an apparently safer and potentially more efficacious mixture of genistein, daidzein, and other soy phytoestrogens in reducing acute radiotherapy toxicities in lung tissue has been under investigation in recent years.1,4,5,9 Findings from a preclinical model indicate the mixture of soy isoflavones enhances high-intensity (10 Gy) radiotherapy, facilitating tumor destruction while protecting lung tissue in nude mice injected with human non-small cell lung cancer (NSCLC) cells.5 Hillman’s team administered radiation to the left lung at 12 Gy to mice who received soy isoflavones pre- and postradiation. They found that the mixture alleviated the skin and pulmonary toxicities, such as

acute pneumonitis and chronic fibrosis, associated with radiation treatment to the thoracic area.1 “We report that supplementation with soy isoflavones pre- and postradiation clearly attenuated skin injury and hair loss caused by radiation, a cogent evidence for the radioprotective effect of soy isoflavones on normal tissues,” they noted.1 “Furthermore, soy isoflavones protected mice from radiation-increased breathing rate. Histologic observation of lung tissues confirmed that soy isoflavones protected normal lung structures against radiation-induced inflammation, damage, and fibrosis.”1

Headlines about preclinical findings are sure to increase patients’ interest. Irradiated lungs in animals that did not receive isoflavones were significantly damaged, showing alveoli-infiltrating inflammatory cells, chronic inflammation, and focal hemorrhages.1 But irradiated left lungs in mice treated with isoflavones before and after irradiation showed mostly normal bronchioles, alveoli, and blood vessels with minimal inflammatory infiltrate and hemorrhage indicating milder pneumonitis.1 The findings of this and previous studies by this team of researchers at the Barbara Anna Karmanos Cancer Institute at Wayne State University School of Medicine in Detroit, Michigan, demonstrate that soy isoflavones inhibit radiation-induced upregulation of survival pathways, resulting in greater cancer destruction in both animal and in vitro studies of lung • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 41



CT scan showing a rounded renal mass (left)

adjuvant is unclear. Efficacies of these and other candidate radioprotective compounds have not yet been studied in combination with concurrent radiochemotherapy or dose escalation.2 Therefore, oncology team members must convey to patients that although early, preclinical studies seem promising, and soy generally appears to be safe, whether soy will improve clinical outcomes for patients with lung cancer and other malignancies is still unclear. ■

of lung carcinoma. Radiother Oncol. 2013;109(1):117-125. doi:10.1016/j.radonc. 2013.08.015. 6. Potter JD, Steinmetz K. Vegetables, fruits and phytoestrogens as preventive agents. IARC Sci Publ. 1996;(139):61-90. 7. Ahmad IU, Forman JD, Sarkar FH, et al. Soy isoflavones in conjunction with radiation therapy in patients with prostate cancer. Nutr Cancer. 2010;62(7):996-1000. doi:10.1080/0163 5581.2010.509839. 8. Adjakly M, Ngollo M, Boiteux JP, et al. Genistein and daidzein: different molecular

carcinoma, renal cell carcinoma, and prostate cancer.1 Collectively, the team’s findings confirm that soy isoflavones can modulate the inflammatory response to radiation, thereby slowing progressive tissue damage.1 A phase 1 clinical trial based on the animal study findings is planned but not yet enrolling patients. Preclinical reports from other research teams suggest possible soy isoflavone mitigation of radiation injuries to hematopoietic, intestinal, and testicular tissues, as well.11,12 In a 2013 meta-analysis of data from randomized, controlled clinical trials of soy isoflavones in prostate cancer, researchers suggested soy isofl avones provide a good safety profi le and reduced risk of prostate cancer.13 (Overall effects on PSA or sex steroid levels were not statistically significant.13) In the meantime, headlines about preclinical findings are sure to increase cancer patients’ interest in soy supplementation. Despite the promises, clinical unknowns prevail. Until more clinical trials are completed, the utility of supplemental soy as a radiotherapy


Bryant Furlow is a medical journalist based in Albuquerque, New Mexico.

effects on prostate cancer. Anticancer Res. 2013;33(1):39-44. 9. Raffoul JJ, Banerjee S, Che M, et al. Soy


isoflavones enhance radiotherapy in a meta-

1. Hillman GG, Singh-Gupta V, Lonardo F, et al.

static prostate cancer model. Int J Cancer.

Radioprotection of lung tissue by soy isoflavones. J Thoracic Oncol. 2013;8(11):1356-1364. 2. Bourgier C, Levy A, Vozenin MC, Deutsch E. Pharmacological strategies to spare normal tissues from radiation damage: useless or overlooked therapeutics? Cancer Metastasis

2007;120(11):2491-2498. 10. Ahmad A, Biersack B, Li Y, et al. Perspectives on the role of isoflavones in prostate cancer. AAPS J. 2013;15(4):991-1000. doi:10.1208/ s12248-013-9507-1. 11. Son TG, Gong EJ, Bae MJ, et al. Protective

Rev. 2012;31(3-4):699-712. doi:10.1007/

effect of genistein on radiation-induced


intestinal injury in tumor bearing mice. BMC

3. Furlow B. The search for targeted radiosensitizing agents. Chemotherapy Advisor.

Complement Altern Med. 2013;13(1):103. http:// Accessed January 16, 2014. 12. Day RM, Davis TA, Barshishat-Kupper M, et

article/293606/. Published May 16, 2013.

al. Enhanced hematopoietic protection

Accessed January 16, 2014.

from radiation by the combination of genis-

4. Hillman GG, Singh-Gupta V, Rynyan L, et al. Soy isoflavones radiosensitize lung cancer while mitigating normal tissue injury. Radiother Oncol. 2011;101(2):329-336. doi:10.1016/j.radonc.2011.10.020.

tein and captopril. Int Immunopharmacol. 2013;15(2):348-356. doi:10.1016/j. intimp.2012.12.029. 13. van Die MD, Bone KM, Williams SG, Pirotta MV. Soy and soy isoflavones in prostate can-

5. Hillman GG, Singh-Gupta V, Hoogstra DJ, et

cer: a systematic review and meta-analysis

al. Differential effect of soy isoflavones in

of randomised controlled trials [published

enhancing high intensity radiotherapy and

online ahead of print September 5, 2013]. BJU

protecting lung tissue in a pre-clinical model

Int. 2013; doi:10.1111/bju.12435.


More to come!



The waiting game


Ann J. Brady, MSN, RN-BC

I expect tasks to fit into the time allotted for them. But communication with patients is another matter entirely.


hat do you do when a patient takes a long time to answer your questions? Do you push them along? How do you handle the situation when your time is limited? There is a lot of waiting involved for oncology patients. It begins right from the start. They go to the doctor because something is wrong, and wait to hear the diagnosis. “You have cancer.” Further testing requires waiting. Surgery requires blood work, and waiting to be scheduled. They wait for treatment planning. If they go for a second opinion, they wait for an appointment, wait while they consider which doctor to select. If they have surgery and need to chemotherapy after, they wait until a certain amount of healing occurs before they start. They wait for results, wait for side effects to manifest, wait for them to lessen, wait for medication to work, or wait for the need for them to

go away. Waiting becomes a way of life. Time is measured by the next milestone. “I see the oncologist next week,” “I start my second round of chemo tomorrow,” “I am scheduled for a follow up CT in 2 months.” The waiting seems endless. I tell patients there is real time and there is medical time and the two should not be confused. Busy nurses, including me, feel like there is never enough time. Any time spent waiting keeps me from the next item on my list. I can’t X out a task until I get to it; I can’t get to it until the waiting is over. I am often a bit impatient. I expect those tasks to fit into the time I allotted for them. But communication with patients is another matter entirely. By nature it is more organic, hard to quantify, timeless. When I talk with patients, their real issues and concerns may be embedded in a long story; one that I may not have planned to have the time to listen to. Sometimes, with the best of intentions, I try to hurry a conversation along, even filling in words when there is a pause. The clock is always ticking. CASE Mr. Sanders was a college professor, perhaps by profession a person inclined to talk and be listened to. Direct questions never elicited a direct response and hurrying him along only seemed to slow him down, like a child being hurried to get dressed and ready for school but who keeps sitting down and making it impossible. If I asked how he was doing he always answered the same way, “That’s a loaded question.” To answer, he had to navigate the provenance of his response, “Well, last night at 9 pm I had a dose of morphine …” It was 11 in the morning, but he ran through all of the night’s events to answer a • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 43


When I talk without stopping to ask myself why am I talking, I run the risk of missing an important interaction.

relatively simple question. More than one of his nurses and doctors commented on how irritating it was. One nurse thought he was “delirious” because he would not answer the question that was asked. There was a meandering style to Mr. Sanders’ conversations. He might start with a litany of events before answering, or he might begin way out in right field, preempting his answer with a seemingly unrelated story that finally arrived at an answer to the question. His personal autonomy was linked to his ambling conversational style. Interrupting him was not an option; pulling up a chair and settling in was. In an article in Psychotherapy Networker, Ronald Siegel references an acronym he recently learned and now uses with his patients: WAIT, or why am I talking?1 It reminds him not to speak unless there is purpose to what he is about to say. WAIT reminds me not just to wait, but to ask myself if what I am thinking of saying should be said. It also allows the time between comments to expand, and in so doing, end up in the right place. That may sound like double talk but it is surprisingly effective. DISCUSSION There are many times when I have to bite my tongue to keep from hurrying a conversation along. Waiting is often very uncomfortable. With Jack, the husband of a young woman dying of metastatic breast cancer, I actively reminded myself to WAIT as

JOIN THE CONVERSATION • Do you think WAIT is a practical tool? • Can you think of a time when WAIT might help you in your conversation with a patient?



Go to to join the conversation in the Comments section on using the WAIT strategy in conversations with patients and their family members.

he described his sorrow. They both knew she was dying, but they had arrived at this point sooner than he or his wife thought they would. Jack needed to talk it out. He couldn’t wait, so I had to. I needed to quietly wait to hear what Jack needed to say; wait while he cried; wait while he talked about how unbelievable the situation was; wait as he tormented himself wondering if he had handled the conversation with his children appropriately. Wait as he gathered his composure. But waiting was not just about time. WAIT is about processing. When I talk without stopping to ask myself why am I talking, I run the risk of missing an important interaction. Jack and I were in the hallway outside his wife’s room. His wife had slipped away mentally and was actively dying. But a young heart can take a long time to stop beating. Essentially, we were waiting for her to die. We stood face to face, and I thought it might be more comfortable if we were in a quiet place. But if I interrupted, he would lose his momentum and we might sacrifice this important moment. The dynamic with Jack was different from the one with Mr. Sanders, but it was similar too. Both needed me to wait while they spoke. I thought of Siegel’s article as we stood in the hall. This was not a two way conversation. I did not need to fill in the spaces with words. And because I didn’t, the conversational pauses detoured into the place Jack needed to be. Active listening implies action. I wanted to fix things for Jack, meaning I wanted to help him get where I knew he was heading. But he didn’t need me to give him directions. He needed me to stand by as he found his own way. And to do that, I needed to WAIT. ■ Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California. REFERENCE 1. Siegel B. Can we afford it? [Wisdom in Psychotherapy]. Psychotherapy Network. 2013;March/April:18-25.




Nondrug interventions can effectively improve time to fall asleep and total sleep time Bette Weinstein Kaplan


leep disturbance and insomnia, often associated with cancer treatment, affect 36% to 59% of patients.1 Researchers at the Perelman School of Medicine at the University of Pennsylvania sought to determine whether interventions used to treat insomnia could be more beneficial if they were also effective at reducing the distress of living with cancer. They evaluated two therapeutic interventions commonly used to manage sleep disturbance and insomnia: cognitive behavioral therapy for insomnia (CBT-I) and mindfulnessbased stress reduction (MBSR).2 Insomnia and disturbed sleep are significant problems that affect approximately half of all cancer patients, reports Sheila N. Garland, PhD, lead author of the study and a clinical psychology postdoctoral fellow in Integrative Oncology and Behavioral Sleep Medicine at Penn Medicine’s Abramson Cancer Center. If not properly addressed, sleep disturbances can negatively influence therapeutic and supportive care measures for these patients. Many patients with cancer do not want to take medications for their sleep problems; they feel they are taking enough drugs. They also worry about side effects and the possibility of developing drug dependence. Therefore, clinicians need to consider what effective, reliable, and nonpharmaceutical interventions can be tailored to this patient population.2

In their study, the investigators recruited 111 cancer patients from a tertiary cancer center in Calgary, Alberta, Canada. The participants were assigned to two groups: one group (47 patients) used CBT-I to manage their sleep disturbance issues, and the other group (64 patients) used MBSR. The authors noted that this is the first study to directly compare MBSR and CBT-I for insomnia in patients with cancer.2

A study evaluated two commonly used interventions: CBT-I and MBSR. COGNITIVE BEHAVIORAL THERAPY FOR INSOMNIA

CBT-I is deemed the treatment of choice by the American Academy of Sleep Medicine for nonpharmaceutical management of sleep disturbance.2 The method consists of four strategies: stimulus control, sleep restriction, cognitive therapy, and relaxation training. The study authors explained that the combination targets and reduces sleep-related physiologic and cognitive arousal to reestablish restorative sleep function. The participants assigned to the CBT-I group attended eight

weekly 90-minute sessions of CBT-I in groups of six to ten patients. MINDFULNESS-BASED STRESS REDUCTION

Studies have shown that MBSR can reduce distress and improve psychological well-being in patients with cancer.3-5 “Within the MBSR program, participants are guided in the development of mindfulness, defined as nonjudgmental awareness of the present moment, to modify appraisals of stressful situations and reduce overall levels of psychophysiologic arousal,” explained the study authors.2 Participants in the MBSR group attended eight weekly 90-minute sessions of MBSR in groups of 15 to 20 patients. They also attended an additional 6-hour weekend intensive silent retreat. “The program provides patients with psychoeducation on the relationship between stress and health, while meditation techniques and gentle yoga are practiced to support the development of mindful awareness and responding to stress,” said the authors.2 RESULTS SHOW MANY POSITIVES The study results demonstrated that insomnia severity was reduced across both groups. However, participants in the CBT-I group achieved positive results faster, whereas participants using MBSR exhibited more gradual improvement • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 45

ONA_TotalPatient0214.indd 45

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THE TOTAL PATIENT over a longer period of time. Both groups experienced a number of positive results, such as increased total sleep time as well as a decrease in the amount of time it took to fall asleep. This held true for participants returning to sleep during the night as well. Mood and stress-related symptoms were improved among all participants at the end of the study, no matter which intervention group they were in. The researchers concluded that although MBSR produced a clinically significant change in sleep and psychological outcomes, CBT-I produced a more rapid and durable improvement. Thus, CBT-I remains the better choice for treating insomnia without medication.2 ■

Bette Weinstein Kaplan is a medical writer based in Tenafly, New Jersey.

stress reduction in mood, breast- and endocrine-related quality of life, and wellbeing in stage 0 to III breast cancer: A


randomized, controlled trial. J Clin Oncol.

1. Savard J, Ivers H, Villa J, et al. Natural course of insomnia comorbid with cancer: An

2012;30(12):1335-1342. 4. Henderson VP, Clemow L, Massion AO, et

18-month longitudinal study. J Clin Oncol.

al. The effects of mindfulness-based stress


reduction on psychosocial outcomes and

2. Garland SN, Carlson LE, Stephens AJ, et al. Mindfulness-based stress reduction compared with cognitive behavioral therapy for the treatment of insomnia comorbid with

quality of life in early-stage breast cancer patients: A randomized trial. Breast Cancer Res Treat. 2012;131(1):99-109. 5. Bränström R, Kvillemo P, Moskowitz JT. A

cancer: A randomized, partially blinded,

randomized study of the effects of mindful-

noninferiority trial [published online ahead

ness training on psychological well-being

of print January 6, 2014]. J Clin Oncol. 2014.

and symptoms of stress in patients treated

3. Hoffman CJ, Ersser SJ, Hopkinson JB, et al. Effectiveness of mindfulness-based

for cancer at 6-month follow-up. Int J Behav Med. 2012;19(4):535-542.

VIRTUAL SUMMIT: Best Practices 3.5.14 | 3-6 PM EST

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Disclosing a diagnosis to children: Tell or not tell? Claire Grainger, LCSW

Patients and caregivers should keep in mind that children often already know when something is “going on.”


s a professional oncology social worker specializing in helping children affected by cancer, I often work with parents whose first and most pressing question is, “What should I tell my children?” As health care professionals, you may find yourself posed with this question as well. Sharing news of a cancer diagnosis with children can be difficult, but disclosing a diagnosis honestly and early on in the treatment process can strengthen communications and help children cope with the uncertainty of a cancer diagnosis better. Professional oncology social workers, available through most hospital/treatment center settings and organizations such as CancerCare (, help patients and families cope with the emotional, financial, and practical considerations of a cancer diagnosis. Social workers can also help parents determine the best way to communicate with their children and come up with a plan. There are some key points to keep in mind that will make you better equipped to answer this delicate question should a patient or caregiver ask it. Children are intuitive Patients and caregivers should keep in mind that children often already know when something is “going on.” They possess a knack for detecting a fluctuation in their family’s routine, even when they cannot pinpoint just what that difference is. So even when not told of a parent’s diagnosis, a child can still note that things seem amiss. This can be frustrating, especially to a younger child whose understanding of feelings, emotions, and language skills are limited.

I recently worked with a CancerCare client who had decided to tell her teenage children about her diagnosis, but not her 7-year-old son. The client noted that every time her son entered the room, she and her daughters would abruptly stop the conversation and a hush would ensue. This greatly confused her son and created anxiety in the home for everyone. There was a hypervigilance in the atmosphere as they strived to prevent her son from hearing the word cancer and learning the truth. Although I greatly respected my client’s strength and determination to shield her son from pain and worry, I encouraged her to disclose her diagnosis to her son. After doing so, she reported that, although it was a difficult conversation, she felt an immediate sense of relief that her family was now all on the same page. Explain things simply and truthfully

Answering children’s questions as directly and accurately as possible is best. Assure children that nothing they did caused the diagnosis, and tell them not be afraid to say the word cancer. Children will hear this word at some point, so hearing it used by trusted family members is better. Explaining the treatment plan and how it will affect their lives is also helpful. Prepare children for any physical changes they might observe during treatment (eg, hair loss, fatigue, or weight loss). Letting them know that their needs will continue to be taken care of will also go a long way (such as, “Daddy will take you to soccer practice instead of Mom for a while”). When helping children cope with a cancer diagnosis, being prepared for every situation • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 47


Remind parents that if they do not know the answer to a question, it is okay to say, “I don’t know.”

oncolo gy nurs e our Con sultants

questio ns &

is almost impossible. Sometimes, a parent may not know what to say. You should remind parents that if they do not know the answer to a question, it is okay to say, “I don’t know. I will try to find out the answer and let you know.”


eople with cancer sometimes ask if I think telling children they will be cured is a good idea. Life has no guarantees, and parents should always give children honest and accurate information but consider sharing it as optimistically as possible. For example, explain hair loss in a different light: losing your hair means the treatment is working hard to help your body fight the cancer. Include the child in caregiving Suggest that patients allow their children to participate in their care. Having age-appropriate tasks, such as bringing their parent a glass of water or an extra blanket, can make children feel more involved in their parents’ care. Extend the support network Encourage patients to build a support network that extends to close friends or school teachers. You can help by directing patients to organizations, such as CancerCare, that provide free

Claire Grainger is coordinator of Children’s Services at CancerCare.

Let us answer your questions!

advisor forum answer s

Can Hair Loss Be Which medi PreVente chemother cation regimens or D? apy-related treatments, undergoin hair loss, if any, can g especially to the scalp prevent or lessen ANP-BC, treatment for breas t cancer? CCRC — Susan and face, in women Minello, RN, MSN Prevention , of pathophysiol chemotherapy-induced ogy associa alopecia is ted of the hair follicle places with chemotherapy-induvery difficult to achiev e given the and radiati these ced structures at alopecia. The on (Onc Donald r. ( increased mitoti flemin Practice. Philad ology Nursing hematologist/o g, MD, Advisor: Com risk of damage by chemoc activity elphia, PA: Cancer Care ncologist, agent by the therapy Center, Davis hair bulb causesMosby; 2009:339-340). prehensive Guide Memorial to Clinical Manifestatio Hospital, Elkins, Absorption cellular divisio West Virginia n of of the alopec n chemo . and protein ia is and the route therapeutic synthesis of administratiodependent upon the treatm or lapatinib n. 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Because pharmacy, ) recommends University tics, antihistamines, insert recommends increases if older every 1 to 2 years. screening mamm of School of bleomycin package dose of 2 units or with antipyre volume expansion, and her Pharmacy, Colorado ography for Aurora. ids, especially if mother, sister, and/o A woman’s chance of a test women exper daughter administering they were young developing to their ticostero required. Patient were given breast cancer relative with a patients prior pressor agents as not a diagno rosemarie less to lymphom1 breast cancer er than 50 years at a. tucci, reactions should diagnosis. Havin sis of breast cancer woman in rn, Msn, manager riencing severe they for oncolog , your questi also increases a woma first two doses. in again unless y research & data services is no one univeron should n’s risk of develo g a close male blood there bleomyc nately, receive , start Unfortu Lankenau cancer routine screen ping the diseas Hospital, desensitized. n question. Many ing mamm Wynnewood, sal answer to this bleo- have been ography based e. The Pennsylvania ter a test dose of on her Do you r, centers adminis have a que first dose. Howeve NJ: stion for on REFERENCES mycin prior to the send insert]. Princeton, end it to been established our editor.ona 1. Blenoxane [package no consensus has Company; 2010. @haymark consultants? be done. Some Bristol-Myers Squibb etmedia.c whether this should bleomycin test www.oncol need for routine om. clinical trial groups, her. 2. Lam MS. The ogynursea large oncolog y century. Ann Pharmacot Oncology Group dosing in the 21st as the Children’s • september in such doses . /october include test 2005;39(11):1897-1902 2011 • onco (COG), do not review article logy nurs protocols. A 2005 e advisor their have 13 s to bleomycin noted that reaction point in treatment question to any give patients 2 The Do you have a been reported at We occasionally first two doses). ane, generics). Ask A Pharmacist? (not just with the bleomycin (Blenox always there is a lack of we that d to facility, author conclude E-mail your questions Per policy at my r, I timing of doses test dose. Howeve s association between editor.ona@hayma card administer a no severity of reaction $10 iTunes gift issue and found You may win a and the onset or test researched the use your question to against routine on whether to for it! We’ll forward answer. Then, and recommended clear cut answer more, some for an in. Dr. Thompson doses of bleomyc Dr. Thompson’s a test dose. Further s should be is used immedi your question and Web patient When a test dose posted on our nurses believe tration of a full response will be s (which prein this column. ately before adminis given their premed reactions) site and appear waiting time exists. standard nsitivity no 30 dose, vent hyperse times range from dose, and some Reported waiting with 1 hour being before the test s should not minutes to 4 hours, believe the premed the test dose. after be given until the test after We wait 30 minutesdose of bleoson, PharmD a test Lisa A. Thomp dose. Should tered? If yes, , Clinical Pharmacy mycin be adminis with department of dose be given assistant Professor, of Pharmacy, aurora, should the test dose? denver School just the initial university of Colorado every dose or OCN, CBCN ann J. Brady, rn, Bsn, symptom management coordinator care at Center, Huntingthe Cancer ton Hospita Pasadena, l, California.

professional counseling and support groups for parents and children. Kids Konnected (http:// offers face-to-face support groups throughout the United States for children affected by cancer. The American Cancer Society ( and the National Cancer Institute ( also have information on helping children affected by cancer on their respective Web sites. Cancer can impact a family greatly, but that does not mean that there is no more room for fun. Kids (and parents) still need to laugh and decompress from the stresses of cancer. Families that can tap into humor might find a renewed resilience. Suggest watching a favorite movie together, or even turn up the music in the house for an impromptu sing-along. Perhaps most importantly, parents and caregivers should always show their children a lot of love and affection. Letting children know that they are loved and will continue to be cared for can go a long way toward giving them—and their parents—some peace of mind during this challenging time. ■

Jia r. conwa y, DnP, crnP, aocnP, fnP-Bc nurse practitio , oncology Care Associa ner at Cancer tes Pennsylvania. of York in York,

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Should a test dose of bleomycin be given and when?

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— Jenene Kittleson

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intravenously for Bleomycin is given types, multiple cancer the treatment of NurSe adviSor 48 oNCoLogy

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“Who called this code?” © ISTOCK

Aluem Tark, RN, BSN

I wondered whether I had overreacted ... I even felt embarrassed, as if I had made a huge mistake.


had just finished my am patient assessments on a beautiful Saturday morning. Our often-busy floor, the pediatric oncology/bone marrow transplant unit, was calm and peaceful. I had just sat down to begin charting when I noticed a coworker seemed very distressed. Wondering what could be wrong, as the floor was quiet, I asked, “What happened?” My coworker told me that a patient’s condition had rapidly deteriorated while she was taking care of him a couple of days ago, and she was still feeling emotionally distressed from it. A seasoned nurse with years of experience, she had quickly recognized some red flags that indicated things were not right. With the warning signs there, she notified the medical care team without hesitation. The situation eventually turned into a code. Additional team members came to assess and intervene, including physicians, a respiratory therapist, a PICU fellow, and a charge nurse, and a code cart was readied. Fortunately, the patient was breathing on his own and was transferred to PICU for closer observation. My coworker’s distress was not caused by the change in her patient’s condition, however; it was the result of a comment she overheard. One of the responders to the code criticized my coworker’s actions, saying, “Who called the code? This was unnecessary!” The story reminded me of a similar experience I had had, and its effect on me was similar to my coworker’s distress. I heard such a comment for the first time 3 years ago. I was a new graduate shadowing one of the most experienced nurses in the unit as part of my staff-nurse orientation. We were caring for a patient who had

received a bone marrow transplant. The patient was fighting hard but was weakened by his illness and given a very slight chance of surviving. He was connected to at least five different medication infusion pumps—an overwhelming situation in the eyes of a new grad nurse. On the second day, the patient seized in bed, and the situation quickly turned into an emergency. My preceptor stayed in the room with the patient, and as physicians rushed in, I ran for the code cart wheeling it in as fast as I could. The patient was transferred to PICU, where he passed away several days later.


s I was packing up the patient’s remaining belongings, I heard two health care providers talking about what had just happened. One of them commented, “Who would call a code for that? We didn’t even use anything from the code cart!” I was stunned and could not speak; I just stood there silent. I started questioning our actions: calling for help, bringing the cart to the room, and assisting by providing necessary medical information as asked. I wondered whether I had overreacted to the situation, as they described. I even felt embarrassed, as if I had made a huge mistake. I finished my orientation and began working on my own. As a bedside nurse, I faced other emergent situations, and each time, I took a moment to weigh the situation. I made sure to look back on all the choices and interventions that were made, either by the medical team or by myself, and all the strengths and weaknesses I experienced while an emergent situation was acute. The more I look back, the more I believe that the statement I heard during my • JANUARY/FEBRUARY 2014 • ONCOLOGY NURSE ADVISOR 49


We cannot always accurately predict what will happen in any given situation, but we can prepare for the worst.

very first code was both inappropriate and unprofessional. As health care providers, we are trained to develop skill sets for recognizing problems and taking the necessary steps to produce positive patient outcomes. But we also learn that circumstances can turn grim fast, often without warning. We cannot always accurately predict what will happen in any given situation, but we can prepare for the worst. That preparation can take many forms, such as notifying the medical care team when any warning signs manifest, seeking additional help when your instinct tells you something is not right, or simply bringing the code cart closer to the patient when rapid changes are taking place.


lassifying a clinician’s decision to call a code as unnecessary or labeling a decision to seek help as overreacting can very well put someone’s life in jeopardy. In addition, it does not facilitate the process of having additional help available if it really is needed. Each time I think about that very first experience, I wish I could be in that situation again. I wish I had had the courage to turn around, look those colleagues in the eyes, and advocate for my decision by letting


es: patient decid When thetre atment e or m No Jia Conway,


ent. Her stop treatm ted wanted to because she and her body was exhaus practicchemothersoul was tired, that I’ve been of different ped n the 10 years one thing I’ve come from the onslaught she had develoesia, gy, be ns. And now ing oncolo dysesth therapy can apy regime that chemo -plantar erythro hair otherapy to learn is a painful palmar brushing her own lost. or a foe. Chem either a friend place. It has its time which made even n, hope was its quantity and difficult. For this woma compromised that certain ly has both t a patien er, we of life was so for her when it gives As clinicians, howev Her quality things she cherished life. may come little becom ing also the quality of were there even both aware that them herself cancer patient y robs life of are all too r ability to do chemotherap the patient ge. Only anothethe personal and leaves a time when challen a and tand es quantity instead. ain outcom possibly unders quality and ating side effects with a can te darkness of uncert r cancer battling debilit a recent encou nter for intima g cancer. Only anothe liberty the I remember undergoing treatment battlin ly understand being able from in was t can possib I sat across in patient who cancer. As back patien experienced led to hold power she metastatic breast ng as she strugg her face any- and “no more treatment.” to give up her, watchi ble to say streamed down we never want oath the tears that ized for feeling so “horri As clinicians, t cancer. We take an to patient our ability battle agains way, she apolog always known this our when every I had ve life, and embraced medical facts, and weak.” ing. to preser ged by the who fiercely the as a fighter now she was really struggl the do this is challen back and examine e is step in the absenc I had to deliver we can do treatment, but preserve life times when always ready for all instant meaning of Even in those was In this very presthis true e news, she medicine. ed that seen her like most horribl of physical I had never , I was remind had the cost of the next round. particular day, she with this patientshould not be at the this ers. She life t’s wishes before. On world on her should ervation of cting a patien e quality. Respe think we can achiev weight of the say No to everything. life’s is we to asked, “When just wanted spite of what interventions and novel at me and she at her, took her in medical should not She looked r with new y agents means we h?” I looked therap desire to stop enough, enoug “The decision about whethe on chemo a patient’s y is not based to override impor tant for us to offer hand, and said, nship try chemotherap ent. It is so can say how ratic relatio to continue that treatm where they It’s a democ Robin Wachsman, place OCN, RN, ts a BSN, feel that they dictatorship. have the right to decide CCRN patien must ts even feel. Patien treatment, in which you they can decide they truly voice, that want any morenow.” and not their own you do not themselves n is just for in a very long have need—for have been privileged if that decisio whattothey serve the first time a medi- granddaughter a sigh of neaselse. I think for was to be married and, with caleoncology breath nurseforforeveryo the past 23 years. I his fatigue she could judge her and shortness of breath, he always time, she felt now that I didn’t considered it a calling, and knew caring he would not be for those with life-threatenin able to attend her wedding. relief. She knew g illness- I resolved to find a resolution for Mr. es has been r.comfulfi lling and challenging. E’s yNurseAdviso symptoms so he could make the trip. • www.Oncolog Oncology nurses are charged with constant 2010 JUNE changes in therapy. New ADVISOR • oral chemotherapy SEARCHING OGY NURSE 44 ONCOL medications and other therapeutics FOR A CAUSE lead to I evaluated any new challenges and new and all causes that could have patient successes had this profound effect on him. I every day. We have to be reviewed on our toes all all of his bloodwork including CBC, the time. I tell newly hired BMP, nurses, “This is and tumor markers. CBC revealed decreased a thinking nurse’s job!” hemoglobin and hematocrit, In practice, I focus on maintaining which met the quality indication for of care, enhancing clinical ESA therapy, and I hoped standards, and the growth supporting progressive research, factors would improve Mr. E’s but I had fatigue. To complete become so involved in the the search for answers, “big picture” of ordered a PET scan to rule out metastasis. I patient care that I had forgotten the imporAs the test results came back, tance of reviewing the including an smaller details. A unremarkable recent patient, Mr. E, caused PET scan showing stable disme my big-picture focus and evolve to reassess ease, Mr. E’s symptoms remained relatively my approach unchanged. to more holistic patient care. Even with the ESA therapy, his hemoglobin levels did not Mr. E is a vibrant 90-year-old improve. Once man whose again, I dug infectious laughter can often in my heels and searched for be heard reso- answers. I reevaluated every step of nating throughout the his care chemo room. He from A to Z; despite this, Mr. is a special patient; that rare E was still person with a fatigued with shortness of breath. magnetic personality that Or, to put draws people to it in his words, “just plain tuckered his side. Nine months ago, out.” he was given a What was I missing? diagnosis of stage IV colorectal cancer. Mr. E’s performance status was excellent with few comorbities, so we s I reviewed all his test results proceeded with chemotherapy. After cycle with the nursing staff, one 3, however, Mr. of E was showing signs of my new trainees asked, “How severe fatigue and lethargy, and the hearty about his iron stores?” laughter that once The flowed through the room light went on! Mr. E’s iron with had diminished. As you might each visit studies were not current, and we had initiguess, he was ated ESA therapy. Could this be functional not a complainer, but in a quiet moment he iron deficiency revealed his greatest concern to me. His great were adequate anemia? Mr. E’s iron stores at the initiation of therapy,

t Patients mus feel that they have their own voice, that they can t decide wha they need.





I had become so involved in the “big picture” of patient care that I had forgotten the importance of reviewing the smaller details.

Seeing the forest for the trees





them know no interventions are unnecessary when it comes to a patient’s care, especially when the patient’s condition deteriorates or changes suddenly. If we put ourselves in the patient’s or the families’ shoes, can you possibly say an intervention was unnecessary? I assured my coworker that her decision to call a code and seek appropriate help was the best decision a bedside nurse could make. I shared my own experience with her. We related to each other’s story, comforted each other, and lifted each other’s spirits. Later, I thought of other nurses or caregivers who do their best in an uncertain situation and felt either unappreciated or even hurt by a careless comment made in regard to their care decisions. Although we might try to ignore such comments, they affect us and make us question ourselves, or our abilities. We should remember that caring for our patients may include advocating for our care decisions. When facing criticism, just advocate for your patient care and leave your doubts at the door. Remember, one positive action can bring about powerful change in the workplace. ■ Aluem Tark is a clinical nurse in the pediatric hematology/oncology unit at New York-Presbyterian Morgan Stanley Children’s Hospital, in New York City.

Do you have a story about a patient you want to share? Oncology Nurse Advisor welcomes narrative essays from oncology nurses for Reflections, our narrative medicine department. Write 1,200 words about an experience with a patient that was especially meaningful to you, and email the manuscript to



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Adjuvant ­endocrine therapy and alopecia A patient receiving adjuvant endocrine therapy for breast cancer is complaining of hair loss. Could the alopecia be due to her endocrine therapy?

Adjuvant endocrine therapy for breast cancer typically consists of 5 years of tamoxifen or an aromatase inhibitor (anastrozole [Arimidex], letrozole [Femara], exemestane [Aromasin]), with some studies supporting extension of this treatment to a total of 10 years in selected women. Although there are some anecdotal reports of hair loss in patients taking these drugs, alopecia is not frequently reported in clinical trials of hormonal agents. A recent meta-analysis found that only 5.8% of publications included data on alopecia.1

Grade 1 alopecia is characterized as loss of less than 50% of normal hair for that patient which is obvious only on close inspection.2 Patients may be able to cover the hair loss with a different hairstyle, but would not require a wig or hairpiece. Grade 2 alopecia is loss of 50% or more of normal hair for that patient and is readily apparent to others. If a patient wishes to camouflage the hair loss, a wig or hairpiece is required. Typically, grade 2 alopecia has a greater association with a psychosocial impact; however, due to the relatively long duration of endocrine therapies, some patients with grade 1 alopecia may experience a psychosocial impact. Hair growth occurs in three stages: anagen (the growth phase), categen (the conclusion of active hair growth), and telogen (the resting stage). Endocrine therapies are thought to cause alopecia through two mechanisms. One mechanism is through shortening of the anagen phase, resulting in thinner, more fragile hair shafts that are prone to breakage and loss; the other is endocrine therapies may increase the length of the telogen phase, resulting in increased hair shedding. The rates of alopecia reported in clinical trials of endocrine therapy appear to be related to the type of therapy used and the use of combination endocrine therapies. A recent meta-analysis suggested that selective estrogen receptor modulators (SERMs), such as tamoxifen, are associated with an increased relative risk of alopecia (relative risk [RR] 8.51 vs placebo) compared with the aromatase

inhibitors (RR 5.99 vs placebo).1 Use of combination endocrine therapies may be associated with increased rates of alopecia, with reports ranging from 10.5% to 25% in clinical trials. The data suggest that sequential use of therapies may also be associated with higher rates of alopecia; one study of tamoxifen followed by an aromatase inhibitor reported 14.7% rates of all-grade alopecia. When patients present with alopecia during endocrine therapy, it is important to detect and manage other causes of alopecia such as hypothyroidism, vitamin deficiencies, or inflammatory/scarring alopecia. Patients without other causes of alopecia may be managed supportively. Treatment options include camouflaging sprays, wigs and hairpieces, use of a different hairstyle, or topical minoxidil. In addition to educating patients about hair loss and management strategies, nurses can also inform patients of local resources (such as support groups) and programs that advise women regarding camouflaging their hair loss (eg, Look Good, Feel Better). ■ REFERENCE 1. Saggar V, Wu S, Dickler MN, Lacouture ME. Alopecia with endocrine therapies in patients with cancer. Oncologist. 2013;18(10):1126-1134. 2. Common terminology criteria for adverse events (CTCAE) v4.0. National Cancer Institute Web site. protocolDevelopment/electronic_ applications/ctc.htm#ctc_40. Accessed January 31, 2014.

Lisa A. Thompson, PharmD, BCOP Clinical Pharmacy Specialist in Oncology Kaiser Permanente, Colorado


Oncology Nurse Advisor January/February 2014  
Oncology Nurse Advisor January/February 2014  

ONA provides clinical information for oncology professionals