CancerConnect News » Gastrointestinal Stromal Tumors

Clinical Trial Participation Is Inadequate

Cancerconnect — Wed, 31 Aug 2011 00:01:43 +0000

A large proportion of cancer patients do not enroll in clinical trials, and those who do participate may not adequately represent age groups, cancer stages, cancer types, and racial and ethnic groups. These findings were recently reported in the Annals of Surgery.

Clinical trials are the process through which medications ultimately become approved by the Food and Drug Administration (FDA) in the United States. Clinical trials provide necessary information about drug safety, efficacy, and optimal dose and schedule of treatment.

Research has suggested that for some medications, treatment effects vary by age, ethnicity, or gender. If certain subgroups of the population are under-represented in clinical trials, however, it may be difficult to determine whether this is the case.

To calculate recent patient participation in clinical trials in the United States, researchers reviewed data from 2001–2008 from the California Cancer Registry. Data were evaluated for enrollment in trials for Stage 0–IV solid tumors and included almost 250,000 patients.

Less than one percent of cancer patients enrolled in clinical trials: 0.64% or 1,566 of 244,528.
White patients were more likely to enroll than African-American patients: 0.67% versus 0.48%.
Certain factors were associated with a lower likelihood of participating in trials. These included older age, early-stage cancer, and lung or gastrointestinal cancers.
Under-enrollment was also more common among uninsured and underinsured patients.

Without broader representation of patient characteristics such as age, cancer type and stage, and race or ethnicity, it’s uncertain how well trial outcomes can be applied to a broader population. Increased patient participation in clinical trials may produce results that can help more patients. In other words, trials with patient demographics that best match real-world patient populations are likely to be better indicators of a drug’s performance.

Reference: Al-Refaie WB, Vickers SM, Zhong W, et al. Cancer trials versus the real world in the United States. Annals of Surgery. September 2011 – Volume 254 – Issue 3 – p 438–443 doi: 10.1097/SLA.0b013e31822a7047.

Preparing for Surgery

Cancerconnect — Wed, 22 Jun 2011 20:41:39 +0000

You can help ensure that your surgery and recovery go smoothly and that you have the best outcome possible by preparing yourself ahead of time. Here are a few tips to keep you healthy and comfortable and help you heal quickly:

Educate yourself. Learn as much as you can about your scheduled procedure ahead of time. Ask your medical team to explain your surgery and ask them to refer you to additional resources (such as journal articles and online material). Make sure all your questions are answered.
Ask about your choices for anesthesia. Options for anesthesia include local, regional, and general and, depending on the type, can be administered through IV or injection or can be inhaled. Find out which options are appropriated for your surgery and how anesthesia may affect you.
Be prepared to manage pain after surgery. You may experience discomfort after surgery, but there are ways to manage the pain. Ask your doctor about pain medications as well as other methods to ease discomfort; relaxation techniques, heat or cold therapy, and message are a few examples.
Reduce risk of infection. There is a risk of infection in hospitals (MRSA, a form of staph, for example). You can lower your risk by making sure you healthcare team washes and sanitizes their hands before treating you and by watching for signs of infection such as fever, chills, and weakness. Ask your doctor about other symptoms of infection.
Learn about your risk for blood clots. Surgery may put you at a higher risk of potentially life-threatening blood clots such as deep vein thrombosis and pulmonary embolism. Risk increase with age, smoking, being overweight, and a history of blood clots or cancer. Some medication also increases risk of clotting, so be sure to tell your doctor about all medications you are taking.
Tell your doctor about all your medical conditions. It’s important that your healthcare team is aware of any health issues, such as diabetes, high blood pressure, heart or lung conditions, as well as food and drug allergies.
Discuss all medications you are currently taking. Some medications, both prescription and over the counter, can put you at risk for complications during surgery. Your doctor can tell you which drugs you may need to stop taking before surgery.
Tell your doctor if you take supplements. Even natural supplements (such as vitamins and herbs) can be associated with a risk of surgical complications. Discuss all supplement use with your doctor before surgery. He or she can advise you on supplements to avoid around the time of surgery.
Find out if you need to donate blood. If there’s chance that you’ll need a transfusion during surgery, your doctor may suggest that you donate blood prior to the procedure. Blood must be donated at least four weeks before surgery.
Plan care after surgery. You may need assistance once you return home. Ask family and friends to help and prepare your home by stocking up on groceries and necessary personal items. Have bandages and other supplies on hand to care for surgical wounds.
Arrive for surgery with an empty stomach. Anesthesia can cause vomiting and interfere with normal reflexes that keep you from inhaling stomach contents, which creates a risk of choking and other complications. You doctor will tell you when before surgery you should stop eating and drinking.
Cut back on alcohol. Alcohol can cause serious complications during surgery, including increased bleeding and damage to the liver. Avoid alcohol before surgery or ask your doctor what amount you can safely consume.
Stop smoking. People who smoke have an increased risk of infection and other surgical complications. If you smoke and are planning to have surgery, it’s a good time to quit.

Three Years of Treatment with Gleevec Improves Survival in Gastrointestinal Stromal Tumors (GIST)

Cancerconnect — Thu, 09 Jun 2011 00:01:33 +0000

Treatment with Gleevec® (imatinib) for 3 years following surgery significantly improves survival compared with the standard one-year therapy for patients with gastrointestinal stromal tumors (GIST).

GIST is a type of soft tissue sarcoma that develops in the stomach, small intestine, or other parts of the gastrointestinal tract. Treatment of early GIST often involves surgery followed by treatment with Gleevec. Gleevec is a type of targeted therapy that inhibits a specific protein that is overactive in the majority of GIST cells.

Researchers from Scandinavia recently conducted a clinical study (The Scandinavian Sarcoma Group XVIII/AIO trial) to explore the effectiveness of longer therapy with Gleevec among patients with GIST. The study included 400 patients with early GIST who were at a high risk of experiencing a recurrence. Following surgery, one group was treated with Gleevec for 3 years while the other group was treated with Gleevec for one year.

Survival was significantly improved for the group of patients treated with Gleevec for 3 years compared to those treated for only one year. At 5 years, survival was 92% for the 3-year group and 81.7% for the 1-year group.
Survival with no evidence of cancer recurrences (recurrence-free survival) was also improved in the group of patients treated with Gleevec for 3 years. Three years following surgery, recurrence-free survival was 65.5% in the 3-year group compared with 48% in the 1-year group.
By the end of therapy with Gleevec, 14% of the group treated for 3 years and 8% of the group treated for one year had discontinued therapy due to side effects.

The lead author of the study stated that although one year of postoperative Gleevec is currently the standard of care for early GIST, “these results are very compelling.” Furthermore, the author stated that the optimal duration of therapy with Gleevec is not yet known, as trials evaluating longer treatment times have not yet been conducted.

Reference: Joensuu H, Eriksson M, Hatrmann J, et al. Twelve versus 36 months of adjuvant imatinib (IM) as treatment of operable GIST with a high risk of recurrence: Final results of a randomized trial (SSGXVIII/AIO). Paper presented at: 2011 Annual Meeting of the American Society of Clinical Oncology; June 3-7, 2011; Chicago, IL. Abstract LBA1.

Know the Signs of Depression in Cancer Patients

Cancerconnect — Thu, 07 Apr 2011 15:42:37 +0000

Because a significant number of cancer patients—an estimated 25 percent—experience major depression at some point during their illness, recognizing the signs of depression among patients is a critical part of optimal treatment. From feelings of hopelessness to an inability to carry out daily tasks, depression can affect quality of life and possibly survival. For these reasons, prompt recognition and treatment of depressed patients is vital. Learn to recognize the following signs of depression. If you or a loved one experiences any of these signs, seek immediate help from a medical professional.

Persistent sad, anxious, or “empty” mood
Feelings of hopelessness and pessimism
Feelings of guilt, worthlessness, and helplessness
Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
Decreased energy
Fatigue and a sense of being “slowed down”
Difficulty concentrating, remembering, and making decisions
Insomnia, early-morning awakening, or oversleeping
Appetite and/or weight changes
Thoughts of death or suicide or suicide attempts
Restlessness and irritability

The Challenge of Identifying Depression

Even though depression is a common complaint among cancer patients, it isn’t always diagnosed. Signs of depression may be confused with symptoms of the cancer itself, as symptoms (like those described above) often overlap. Furthermore, patients may also be experiencing a wide range of health issues, which can take medical priority over emotional and psychological concerns. These challenges in recognizing depression may be compounded by the fact that many patients don’t report depressive symptoms, perhaps due to an associated stigma or because they feel that cancer should take priority. Together, these challenges make a firm understanding of the symptoms of depression a critical step in recognizing this potentially debilitating yet treatable side effect. Once again, if you or a loved one experiences any of the above symptoms, seek help immediately.

Nexavar Shows Promise against Drug-Resistant GIST

admin — Tue, 01 Feb 2011 07:01:32 +0000

Among patients with gastrointestinal stromal tumors (GIST) that were resistant to both Gleevec® (imatinib) and Sutent® (sunitinib), treatment with Nexavar® (sorafenib) resulted in tumor shrinkage or stable disease in 68% of patients. The results of this Phase II clinical trial were presented at the 2011 Gastrointestinal Cancers Symposium.

GIST is a type of soft tissue sarcoma that develops in the stomach, small intestine, or other parts of the gastrointestinal tract. Treatment of early GIST often involves surgery. Advanced GIST tends to respond well to the targeted drug Gleevec, but resistance to Gleevec eventually develops in most patients. Another drug—Sutent—may be used to treat GIST that has become resistant to Gleevec, but treatment options are limited for patients who are resistant to both Gleevec and Sutent.

Nexavar is a drug that is currently used for the treatment of certain patients with kidney or liver cancer. To evaluate Nexavar for the treatment of GIST that is resistant to both Gleevec and Sutent, researchers conducted a Phase II clinical trial among 38 patients. All study participants were treated with Nexavar.

Nexavar controlled the cancer in 68% of patients: 13% of patients experienced tumor shrinkage (a partial response) and 55% of patients experienced stable disease.
One-year overall survival was 44% and two-year overall survival was 21%.
Side effects of Nexavar included high blood pressure, fatigue, and hand-foot syndrome (pain, swelling, numbness, tingling, or redness of the hands or feet). Side effects led to dose reductions in 63% of patients.

These results suggest that treatment with Nexavar may benefit patients with GIST that has become resistant to standard therapies. In a prepared statement, the senior author of the study commented “These results give us hope that we can find additional treatment options for these patients.”

Reference: Campbell NP, Wroblewski K, Maki RG et al. Final results of a University of Chicago phase II consortium trial of sorafenib (SOR) in patients (pts) with imatinib (IM) and sunitinib (SU)-resistant (RES) gastrointestinal stromal tumors (GIST). Presented at the 2011 Gastrointestinal Cancers Symposium, January 20-22, San Francisco, CA. Abstract 4.

Cancer Navigators

admin — Tue, 24 Aug 2010 15:37:12 +0000

Cancer navigators offer patients guidance as they find their way through a cancer journey.

By Sally Abrahms

In 1992 Anne McNerney was an insurance company executive and the mother of four children under the age of five, including two-year-old twins. One day she found herself racing between hospitals: her husband was in one with a broken neck from a work accident; her son was in another with a serious lung disease. “I said, ‘What else could go wrong?’” recalls Anne. “Two months later I got the answer.”

Anne was diagnosed with breast cancer. She received six different types of chemotherapy and underwent surgery and radiation. Gradually, her husband and son improved, and, “as my hair started to grow back, my life grew back, too,” she says. After returning to work, Anne decided that what she really wanted was to stay home with the kids. She resigned from her job to be a full-time mom.

But after a while she became antsy. Anne’s husband suggested that she volunteer at the hospital in Baltimore where she had been treated. “I volunteered so much the staff said, ‘Give this woman a job—she’s here all the time!’” Anne says.

Four years ago Anne took that job. She now works as a patient navigator in a rapidly growing field composed of social workers, nurses, and lay people—many of whom are cancer survivors themselves—who are advocates for newly diagnosed cancer patients (or others with ongoing, serious medical conditions). Navigators steer patients through the healthcare maze by connecting them to services and resources in the hospital and the local community, coordinating treatment schedules, expediting medical appointments, explaining issues, coaching them on questions to ask the doctor, arranging transportation to treatments if necessary, locating support groups, demystifying health insurance and prescription reimbursement, and acting as a sympathetic and empowering ear.

“It’s difficult to deal with all these issues when you’re well, but when you’re sick you don’t want to lift your head off the pillow much less make a bunch of calls or line up help,” says Anne, 55, who works at the University of Maryland Marlene and Stewart Greenebaum Cancer Center. “Every patient has a story, and with that comes individual needs they have.”

Understanding the Patient Perspective

Loretta Honeycutt, 46, who has leukemia, has benefited first-hand from Anne’s help. “Anne takes away that clinical side,” Loretta says. “You look at her, and she’s a survivor. She has the ability to understand what you’re feeling, whether it’s anger, anxiety, or frustration.” One day Loretta showed up at the hospital after she lost her hair. “In Anne’s office were beautiful wigs, and one just happened to be a perfect match,” says the brunette, who chose one that had bangs and a little flip at the ends. Anne also contacted the Leukemia Society of America on Loretta’s behalf and told her about grant money that pays highway tolls so that Loretta could get to the hospital for her treatments, and introduced her to Look Good…Feel Better, an American Cancer Society (ACS) program that brought in a professional makeup artist to teach her to apply makeup and style her wig.

Patient navigators like Anne who are themselves survivors provide a powerful dose of hope to patients. Charlene Smith, a radiation therapist and patient navigator at St. Joseph’s Medical Center in Stockton, California, is an 18-year breast cancer survivor. She works to ease the anxiety that breast cancer patients may experience upon diagnosis. Patients are often “freaked out and don’t know what to do,” Charlene says. “They are scared to death.” By providing resources and the perspective of a longtime survivor, Charlene offers a unique toolkit to the patients she counsels. “We have a library and offer literature, and we talk to them. But what they get the most out of the service is the knowledge that someone like me survived. I tell them my babies were ages one and two when I was diagnosed, that I never thought I’d see them get into kindergarten, and now they have graduated from college. It is a relief to newly diagnosed patients.”

Also a relief is the continuing support and direction that navigators offer as patients consider treatment options and process medical information—all of which can be confusing. Many people turn to the Internet first, which can result in information overload. They wind up with lots of questions, but often don’t know where to go to find answers. This is where a navigator can again ease the burden: “There are a lot of resources,” says Charlene, “but patients have to know they exist.”

Patient Navigators: The Back Story

The concept of patient navigators was conceived in 1990 by Dr. Harold P. Freeman, past national president of the ACS and founder and president of the Ralph Lauren Center for Cancer Care and Prevention, as a way to help low-income, immigrant, and other underserved groups get the best care—and thus, the best outcome—possible. Typically, the ACS trains navigators in a three-day course that involves learning about the disease, effective ways to communicate with patients, and obstacles a patient may face in the hospital system or at home. Navigators sometimes also attend other training workshops, conferences with fellow navigators and professionals, and community meetings.

Some navigators are nurses; others are healthcare professionals such as physicians and social workers; and still others are lay people, many of whom are cancer survivors, who undergo training to prepare them for their role. Patient navigator Carol Spitz has a master of education degree in counseling and a master of social work degree and has attended patient navigator training sessions, but she says she has learned a lot from the patients themselves: “Each patient has taught me enormously about social problems, health disparities, survivorship, and end-of-life issues,” Carol says.

The American Cancer Society sponsors 140 patient navigator programs in U.S. cancer facilities; and the National Cancer Institute, which collaborates with the ACS, is in the midst of a five-year Patient Navigator Research Program at nine cancer sites (Boston; Chicago; Columbus, Ohio; Denver; Portland, Oregon; Rochester, New York; San Antonio; Tampa; and Washington, D.C.). All of these programs contribute to the hundreds of patient navigator programs that exist across the country—many specifically geared toward cancer patients and some toward diseases other than cancer. Navigator salaries are paid by the ACS, the hospitals themselves, federal grants, or a combination of the three.

A handful of private Cancer Navigation Consultants™ also exists, including New York City–based navigator Kathy Gurland, who started her own business, Peg’s Group, in honor of her sister, Peggy. Clients pay an hourly fee for Peg’s Group services, which range from one-on-one counseling (in person, via e-mail, or by telephone) to help with doctor appointments and translating medical information to providing personalized action plans and access to resources.

The Benefit to Patients

In today’s cutthroat healthcare climate, where policymakers and hospitals are scrambling for ways to cut costs and reduce readmissions, the patient navigator concept is particularly appealing. So far the results look promising. Radiation oncologist Lynette Hart, MD, who works with Charlene Smith in the patient navigation program at St. Joseph’s Medical Center, says, “The Cancer Navigator program functions as an important link in the chain of cancer patient care. Because they lack education or computer skills, some cancer patients don’t advocate for themselves. They can fall through the cracks and can suffer as a result by not receiving the appropriate information, evaluation, therapy, and support. These can lead to a poorer outcome in terms of cancer cure or survival.” A 2003 study at Harlem Hospital, which had the first patient navigator program in the country in 1990, found that breast cancer survival there rose from 39 percent to 70 percent after the patient navigation program was launched.[1]

When Rebecca Kay Chafin, 50, learned in 2005 that she had Stage IV breast cancer, the Temple, Texas, resident was told she would need to see several specialists, including an oncologist, a radiologist, and a social worker. “I was totally undone,” says Rebecca, a former pediatric nurse. “The report said the cancer had metastasized into my abdominal cavity, my liver, and my spleen. And then I was told I had to wait three weeks to see a doctor! I couldn’t possibly wait that long, knowing what I knew.” Rebecca picked up the phone and called her patient navigator. “The patient navigator said, ‘Give me 15 minutes, and I will call you back.’ I thought, Yeah, right!” recalls Rebecca. “But she called me right back and said, ‘Can you be here in 35 minutes?’ I had an appointment that morning with an oncologist. She also set up a radiation consult for that day, and I saw a social worker. She was a godsend! Those first few months everything was chaos. I just couldn’t believe what had happened. The patient navigator was really important. She arranged all my appointments, and I would see her in the hospital halls. She was on the ball, very caring, and very calm.”

Having someone who cares can make all the difference. It clearly did for one of navigator Anne McNerney’s lung cancer patients. Conventional treatments had failed, and the unemployed plumber was offered access to a clinical trial. But he didn’t have a telephone, and the hospital needed to be in touch with him; it was required to be a part of the trial. Anne and a nurse in radiation arranged for him to get a prepaid cell phone. “A year later he comes through the clinic, and he’s fine,” remembers Anne. “I never expected him to make it. He was working again, and he had brought the phone back so we could give it to someone else. That $100 prepaid phone was a pivotal moment for the man. He was at such a low point in his life and thought, Someone cares enough to get this for me, and maybe I can do this. That was an aha moment, and it inspired me to think, It’s not just about the medicine, it’s about hope, which comes in many forms. In many ways a patient navigator is a hope coach. I go home at the end of the day and feel as if I’ve really made a difference in someone’s life.”

Reach Out

Find a patient navigator near you:

Contact a local hospital’s Patient Relations Department.
Call the American Cancer Society at (800) ACS-2345 [800-227-2345] and ask about a patient navigator program in your area.
Google “patient navigators” or “cancer navigators” plus your location.

Reference

[1]. Freeman, HP. Patient navigation: a community based strategy to reduce cancer disparities. Journal of Urban Health. 2006;83(2):139–41.

Money Matters

admin — Thu, 19 Aug 2010 15:03:22 +0000

Managing the financial aspects of a cancer diagnosis can seem overwhelming, but there are resources available to help.

By Diana Price

You have just been diagnosed with cancer. You grapple with the physical reality of the diagnosis, you rise to the challenge of making important treatment decisions, and you face another—sometimes shocking—reality of your new normal: cancer is expensive.

According to the Cancer Financial Assistance Coalition (CFAC), cancer patients face myriad costs when they are diagnosed. First, direct medical costs can include doctors’ fees, hospital charges, and medication expenses. Some of these costs may be covered if you are insured, but many insurance plans place limits on many aspects of this care. Second, nonmedical costs, including transportation to treatment, over-the-counter medication, child care, home care, and medical supplies, are generally not covered by health insurance. Finally, the daily living expenses don’t stop when you’re diagnosed; you’ll still need to cover food, housing, utilities, and other living expenses, even if you can’t work during this time. Yikes.

So, what’s a newly diagnosed cancer patient to do? First, take a deep breath. Know that there are resources out there to offer assistance with this aspect of your journey. And here to gather those resources under one roof—or on one Web site, anyway—is CFAC, “a coalition of financial assistance organizations joining forces to help cancer patients experience better health and well-being by limiting financial challenges.” Jane Levy, LCSW, director of patient assistance programs at CancerCare (the organization that spearheaded the coalition), says that CFAC was founded in April 2007 when the 12 original members met, with funding from Genentech, to discuss the rising demand for financial assistance and ways that their separate organizations could increase communication, share best practices, and develop more strategies to help patients.

Now, two years later, CFAC hosts a Web site—www.cancerfac.org—featuring a resource directory for patients that, Jane says, offers “one-stop shopping for national and local resources for financial assistance, information on issues of financial concern, information about how to access resources, and the latest news on the financial and insurance fronts.” With so many important resources in one place, patients and families save time and find customized help.

The American Society of Clinical Oncology has also answered the call to educate patients about topics related to the financial aspects of cancer. In Managing the Cost of Cancer Care (available online at www.cancer.net), the organization provides valuable information about understanding costs related to care, important questions to ask related to treatment costs and insurance, and organizing critical financial and treatment information. The booklet also includes a comprehensive resource directory, listing financial and co-pay assistance providers as well as travel and lodging resources; it also includes a glossary of financial and insurance terms.

Also extremely valuable to patients and families facing financial issues as a result of a cancer diagnosis is the work of the Patient Advocate Foundation (PAF), a national 501(c)(3) nonprofit organization linking patients and families with case managers within the organization. Case managers work with their clients to resolve insurance and health access issues ranging from insurance disputes and medical debt crisis, to social service concerns related to their illness (including child care, transportation, and home health needs) and general financial assistance. According to Nancy Davenport-Ennis, who founded the organization 12 years ago, the PAF case managers who handle the incoming calls are part angel, part translator, and part mediator—all with a common goal: “We want every caller to know that though they may not understand insurance or how to overcome their particular problem, they’re not alone.” In addition to the in-person help that the case managers provide to callers who reach out, PAF offers valuable information via its Web site (www.patientadvocate.org).

Though the financial issues in the wake of a cancer diagnosis can seem daunting, the organizations described here provide information, financial assistance, and expertise in dealing with the challenges that arise. Reach out for the help you need and take comfort in the many helping hands that these organizations provide.

Patient Advocate Foundation

The Patient Advocate Foundation seeks to safeguard patients through effective mediation, ensuring access to care, maintenance of employment, and preservation of their financial stability.

www.patientadvocate.org

(800) 532-5274

Here to Help You!

Here are the 13 member organizations of CFAC offering financial assistance to patients:

American Cancer Society
CancerCare
CancerCare Co-payment Assistance Foundation
Chronic Disease Fund
Healthwell Foundation
Leukemia & Lymphoma Society
Leukemia & Lymphoma Co-pay Assistance Program
Max Foundation
National Marrow Donor Program
National Organization for Rare Diseases
Patient Access Network Foundation
Patient Services Incorporated
Sarcoma Alliance

Proactive Financial-planning Tips

When faced with the significant challenge of a cancer diagnosis, a proactive approach to financial planning can keep you from getting weighed down by a financial mess, leaving you time to focus on your health and relationships. Here, Michael Searcy, president of Searcy Financial Services, Inc. (www.searcyfinancial.com), a registered investment advisory firm in Overland Park, Kansas, offers some practical steps to help you plan.

Gather and organize important papers.

Gather yearly statements (toss monthly statements only if provided a year-end recap), insurance information, retail account numbers, computer passwords, magazine subscriptions, association and membership information, and a list of important financial and other advisers (and their contact information). Let someone know where this documentation is. If you’re single, make sure two trusted people know the location of these documents.

Understand your financial position.

Prepare a net worth statement through a balance sheet so that you have documented your assets and liabilities, including an income statement to show everything coming in the door and a categorized living expense report to show everything going out the door (and where it’s going).

Meet with an estate-planning attorney.

If you haven’t revised your estate-planning documents within the past three years, you should meet with an estate-planning attorney who can help you make sure that all your affairs are in order.

Document all medical expenses.

Keep receipts and mileage forms for medical-related situations; these will come in handy (and could save you money) during tax season.

Attack small debts first.

Pay off your smallest debt; then attack the next with the original payment plus more. You’ll be surprised how quickly you can eliminate a number of debts using this method.

Consult your financial adviser or insurance professional.

Explain your entire circumstances. There are many planning opportunities to help those dealing with cancer, but they depend on each unique situation.

Streamline and plan for an easier financial transition if you become unable to manage your finances yourself.

Consolidate bank accounts to a single institution, but be aware of FDIC limitations, and consolidate brokerage accounts to a single custodian.

Make all your moments and memories count!

Managing a rare cancer

admin — Wed, 18 Nov 2009 17:43:17 +0000

Managing a rare cancer diagnosis presents unique challenges. One survivor shares her tips for navigating the sometimes-murky waters.

By Phyllis A. Domm, with Ashley and Chris Laub

Happy New Year: January 7, 2008 (the day I became really special). On January 7, I became really special. The pathologist at Good Samaritan Medical Center in West Palm Beach, Florida, where I had been hospitalized for a complete hysterectomy the week before, informed me that my excised tumor was a malignant perivascular epithelioid tumor (PEComa)—a rare cancer—and that he was forwarding research articles to my gynecologic oncologist.

But it wasn’t until the next morning, when I had the chance to have a detailed conversation with my physician, Howard Goodman, MD, that I realized just how significant this medical news was. There have been only 120 documented PEComa cases since 1994, and the World Health Organization only differentiated and named the tumor in 2002. Additionally, I had become confirmed case number four of cervical PEComas.

Armed with the rush of information I gleaned through a fast read of articles online, I flooded my wonderful physician with questions: What is a PEComa? What did he really learn from my surgery? What did the pathology report truly reveal? How could an 8-plus-centimeter tumor grow with virtually no symptoms (my only symptom was extensive bleeding on Thanksgiving weekend 2007)? Why did this PEComa attach itself to my cervix? What should we do? Did he suggest any additional medical opinions? Were there other search engines I should be investigating? My mind had been racing for 24 hours, and my words and questions could barely keep pace with my thoughts.

My conversation with my doctor left me feeling much better. The tumor had been completely removed, there was no lymph node involvement, and the margins were wide and clear. With my mind put off the immediate concerns that had filled my head initially, I still felt I needed more information.

What would follow during the weeks and months after my diagnosis, as I sought information and came to terms with it, was a process of research and self-discovery. What I learned, and what others diagnosed with rare cancers should be aware of, is that the diagnosis of a rare cancer can present unique challenges, medical and psychological, but that there are tools—clinical and within ourselves—to help us cope with the challenge we are facing.

Become the CEO of Your Own Healthcare Team

As a healthcare management professional, I approached my diagnosis as I do my business, and I have found that the model has helped me throughout this challenging process. Managing your care journey as a successful, competent chief executive officer (CEO), you’ll be able to approach the diagnosis with a clear, goal-oriented approach that will help you overcome obstacles and use all the resources at your disposal. The qualities of a successful CEO become even more critical in this lifesaving role you are taking on:

Leadership. Lead your support team of family and friends.
Delegating. Find family and friends who can take responsibility for caregiver tasks, financial matters, cheerleading, and analyzing your care decisions with you.
Prioritizing. You will need to prioritize how much time you devote to research, to support, and to your personal care and wellness. It will be more important than ever to maintain a good work/life balance.
Communicating. A rare cancer requires a lot of outreach and ongoing communication through electronic media. Like a CEO with a communications director, you may need to choose a friend or family member who can update your entire resource team about your status.
Decision-making. As the CEO of managing your own care, you’ll be called on to make many decisions about your care. You may find it useful to write down some decision-making guiding principles or to turn to family members or close friends who can help you think through issues at crucial decision points.
Organizing. A competent CEO organizes not only her team but also her resources, finances, and research data.

Rare Cancer 101
Now that you have taken on the role of CEO, it’s time to understand the unique challenge with which you have been presented. The federal government defines rare cancers as those with fewer than 40,000 cases per year in the United States. Some rare cancers have fewer than 100 cases. A cancer is classified as rare if it affects an unusual body site, presents as uncommon (exceptional), is difficult to diagnose, or requires special treatment (and often undefined). In short, you have been challenged by a disease that will require a commitment to research.

Do Your Homework
You’re aware now of the challenge that your diagnosis presents; the next step is to educate yourself about your condition. Any good CEO knows the value of research, and this step is especially important in the case of rare cancers. The more you know, the more empowered you will be as a patient.

The following resources are a good place to start searching for and locating information about rare cancers:

General Internet search (Google, Yahoo!). In my experience the information about rare cancers returned from a general search can be hard to wade through and might even be misleading. The more-specific medical and rare cancer sites (below) will provide better results.
PubMed (www.ncbi.nlm.nih.gov/pubmed). From the Web site: “PubMed is a service of the U.S. National Library of Medicine that includes over 17 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources.”
UpToDate (www.uptodate.com). From the Web site: “UpToDate is an electronic information resource available on the Web, desktop, and PDA. With UpToDate, you can log in from the office, exam room, or bedside and get specific, detailed answers to your clinical questions. Over eighty million patient-related problems are researched each year with UpToDate.”
Rarer Cancers Forum (www.rarercancers.org.uk). International/global connection for all rarer cancers; includes blogs and news.
Rare Cancer Alliance (www.rare-cancer.org). From the Web site: “RCA’s primary purpose is to disseminate information and provide support to all pediatric (childhood) and adult rare cancer patients.”
Association of Cancer Online Resource (www.acor.org). A free lifeline for everyone affected by cancer and related disorders. Access to 159 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders. Notification system for events, support groups, research.

As you locate resources and information, seek out as many pertinent research articles as possible related to your diagnosis. From these articles you can assemble a list of medical experts and centers that treat your condition and create a plan to contact them and thereafter plan your treatment.

Overcome Challenges
All CEOs are faced with challenges and obstacles, as is anyone diagnosed with a rare cancer, but there are tools and strategies available to help you. As CEO you will utilize the tools effectively to get the best care possible. Here are some of the key challenges along with some strategies from the trenches.

1. Getting an accurate diagnosis
This may be the most difficult step. How and where do you get an accurate diagnosis? By researching your diagnosis through the rare cancer Web sites listed here, you can learn who has published research on your cancer, which will lead you to an expert in the field.

PubMed is especially useful in this way. Search the database for your cancer type, and you will find peer-reviewed articles describing research on your cancer; the authors of these articles are likely good resources. A list of these doctors and their affiliated institutions can lead to appointments with the experts you seek for first, second, and even third opinions.

2. Finding excellent—and expert—care
Having received a diagnosis, where do you go for treatment? You may choose to stay with the doctor who offered you a diagnosis, or you may seek care elsewhere. This is a time when, as CEO, you will need to make a series of important decisions about your care. You will need to ask questions, seek advice from your trusted support network, and evaluate your care team carefully. It is important that you feel confident that you are being treated by an expert in the area of your rare cancer and, if necessary, in a place that provides a multidisciplinary approach to manage the complicated nature of many rare cancer diagnoses.

Most rare cancers are more effectively treated in a specialized center. The National Cancer Institute (NCI) Web site (www.cancer.gov) is a good resource to help locate major, high-quality cancer centers and their resources (though it’s important to note that not all rare cancers are treated at NCI cancer centers). In addition, the National Comprehensive Cancer Network Web site (www.nccn.org) provides information on 21 of the world’s leading not-for-profit cancer centers.

When you locate a doctor or a cancer center that you think will accommodate your needs, consider asking a few questions to determine if the treatment center is the right place to seek care:

What is the goal of treatment for my cancer?
What are the chances the treatment will work?
What are my various treatment alternatives and with what risks?
After treatment, will I be cured, in remission, or relieved of my symptoms?
How much will the treatment cost?
How do you manage collaboration for optimal care in my case? Within the center and with other centers?
Can I meet with my team together?
Can I have checkups with all my doctors in one visit?

3. Accessing clinical trials
How do you find clinical trials for a rare cancer? There are often few options in clinical trials available for patients with a truly rare cancer because most trials are cancer specific. On the other hand, your rare cancer may be similar to another, more common kind of cancer. Your physician may be able to guide you to a clinical trial for more-common cancers that is possibly applicable to your rare cancer. Unfortunately, no single resource lists every clinical trial. As with other areas of research related to your rare cancer, you will need to search online, ask your healthcare team for guidance, and seek resources wherever you can find them.

Here are a few places to start:

Coalition of Cancer Cooperative Groups:www.cancertrialshelp.org
eCancerTrials:www.ecancertrials.com
National Cancer Institute:www.cancer.gov/clinicaltrials
Center Watch:www.centerwatch.com
Acurian:www.acurian.com
EmergingMed:www.emergingmed.com

Find Support
You’ve taken on the challenge of becoming the CEO of your own rare cancer journey, you’ve done your homework, and you’ve found good care. Now what? Chances are you have already discovered that you will need a lot of support throughout this process; if you haven’t already put together a support team, now’s the time.

Creating your own support network is especially important for those diagnosed with a rare cancer because the most distinctive feature of a rare cancer diagnosis is often isolation—there may be few survivors and no available support network.

So who will help you throughout your journey? Whom can you count on? Who will be there throughout to help you manage the process? As CEO consider how the best teams in business are created: teams are most effective when they are inclusive (a variety of talents and skills), effective (information necessary for success is openly shared), and communicative (thanks to all the marvels of technology, virtual teams can be joined electronically). In forming your own team, you might also consider choosing some individuals who are experienced in unconventional thinking and relentless questioning—two attributes that are critical in addressing a rare cancer diagnosis.

In building your team, also think about who should constitute your best networking, resource, and support systems within that larger team. It can be helpful to call on people from many different areas in your life:

Your medical contacts
Your spiritual advisors
Your family
You friends and “inspirers”
Online support (chat groups and blogs can be especially useful for rarer cancers)
Your technical team (accountant and financial planner)

Unfortunately, there are few formal support groups to accommodate rare cancer survivors, although the online support network available through the Rarer Cancers Forum (www.rarercancers.org.uk) has been a wonderful resource for me.

Where Do You Go from Here?
There is no doubt that a rare cancer diagnosis will change your life. In my case, I made the decision following my diagnosis that it was my time—time for self-care, for wellness, and for spirituality. I was determined to find new vitality and to refocus my energies. I prepared a list of activities I would choose not to do, and I eliminated them from my life. Incredibly, the time I now need is available! The decision of what to do with my time takes on a new significance as I move forward. However your journey redefines you, remember that this diagnosis need not overwhelm you. Take on the challenge, use these strategies from business (and others you find along the way), and know that there are resources available to get you through.

With more than 20 years’ experience in human resources leadership positions in a variety of healthcare, insurance and consulting organizations, Phyllis A. Domm has worked diligently to design and implement programs that reflect the highest level of integrity and corporate values. Her book, Human Risks and Resources: How Every C-Level Executive Can Assess Human Risks and Improve Their Human Resources, has been recognized in business publications and Directors Education sessions. Phyllis has served on the Board of Equitable Resources (NYSE EQT) for the past 12 years and currently chairs the Compensation Committee. She holds an EdD from Boston University, an MA and an M Ed from Tufts University, and a BA from Mount Holyoke College. After a January 2008 extremely rare sarcoma diagnosis, Phyllis is focusing on service by devoting her time and experience to museums, hospitals, and education on rare cancers. She has teamed with Dana Farber Cancer Institute (DFCI), Massachusetts General Hospital and others to educate patients and stimulate research and resources, and a dedicated research fund—The sPECial Fund—has been created at DFCI. In addition to research, a series of articles and lectures is planned. She can be reached at phyllis.domm@solutionsm2.com.

What to Tell Children when Facing a Diagnosis of Cancer

admin — Wed, 18 Nov 2009 18:36:57 +0000

If you have children in your life, you already know that they tend to be creatures of habit who rely on their daily routine. There may be unexpected changes in their routine with your fight against cancer, and you may be concerned about the best way to talk to them about it. Whether you’re a parent or have children you love in your life, you probably already know how children can react to different types of stress. In order to set things on the right track, it’s best to be open and honest with them. If you have children in school, it’s also a good idea to inform your children’s teachers or other care providers that your children may be facing some tough challenges. Here are some informative tips to help the children in your life understand what is going on:

Hold regular family meetings to discuss your diagnosis, how treatments are going, and what your doctors are telling you.
If you are unable to go to your children’s special events—like games or school plays—have another parent tape the event so you can watch it with your children at a later date.
Reassure children that you did not get cancer because of something they did. Also be sure to let them know that you cannot “catch” cancer like you can catch a cold.
Make every effort to be there for the children in your life—as long as your doctor says it’s safe to do so. For the times you can’t be there, send along a good luck note to let them know that you care.

While it might take your children a little while to adapt, your honesty and love will help them through this difficult and challenging time.

Gleevec® Approved for Adjuvant Treatment of Gastrointestinal Stromal Tumors

admin — Sun, 08 Mar 2009 18:11:18 +0000

Gleevec® Approved for Adjuvant Treatment of Gastrointestinal Stromal Tumors

The U.S. Food and Drug Administration has expanded the approval of Gleevec® (imatinib mesylate) to include the adjuvant (post-surgery) treatment of Kit-positive gastrointestinal stromal tumors in adults.

Gastrointestinal stromal tumors (GIST) are a relatively rare but aggressive type of soft-tissue sarcoma. These cancers are most commonly found in the stomach or small intestine.

It is estimated that there are between 4,500–6,000 cases of GIST diagnosed annually in the United States. More than 90% of these cases are Kit-positive, meaning that the cancers contain a particular protein (Kit) that contributes to cancer growth.

Early GIST, or GIST that has not spread to distant sites in the body, is often treated initially with surgery to remove the cancer. Unfortunately, the risk of recurrence is high, and GIST remains relatively resistant to chemotherapy and/or radiation therapy. Targeted drugs that inhibit the Kit protein, such as Gleevec, offer an important new approach to treating these cancers.

Gleevec was first approved in 2001 for the treatment of Philadelphia chromosome-positive chronic myelogenous leukemia. Since that time it has been approved for several other uses, including the treatment of Kit-positive GIST that cannot be surgically removed or that has metastasized (spread to other parts of the body).

The study that led to the approval of Gleevec for adjuvant (post-surgery) treatment of GIST was a Phase III clinical trial that involved more than 700 patients. After surgery to remove the cancer, patients were assigned to receive either Gleevec (400 mg/day) or placebo.

After a median follow-up of 14 months, 8.4% of patients treated with Gleevec had experienced a cancer recurrence or death compared with 19.8% of patients treated with placebo. Gleevec was generally well tolerated. The most frequent adverse reactions were diarrhea, fatigue, nausea, edema, decreased hemoglobin, rash, vomiting, and abdominal pain.

This study suggested that Gleevec significantly reduces the risk of cancer recurrence after surgical removal of Kit-positive GIST, and Gleevec is now approved for this purpose.

Reference: Novartis media release. Glivec receives US approval as first treatment to reduce risk of cancer returning in patients with gastrointestinal stromal tumors. Available at: http://www.novartis.com/newsroom/media-releases/en/2008/1279094.shtml. Accessed December 23, 2008.