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Odds & Ends Abstracts by Tom Swartz and Bruce Shriver
In this issue:
The Amschwand Sarcoma Cancer Foundation Expands its Corporate Apartment Program The Amschwand Sarcoma Cancer Foundation (ASCF) has recently expanded its popular corporate apartment program for sarcoma cancer patients. In 2007, ASCF started the program to complement its existing "Shared Families" hospitality house concept which connects Houstonians who have a room to share with visiting sarcoma patients. "While 'Shared Families' works for many of our patients, after Hurricane Katrina, we realized that the hospitality house program doesn't work for everyone," states Melissa Amschwand Bellinger, ASCF Board Chair. As a result, and after much research, ASCF board members voted unanimously to partner with Premier Corporate Housing on a new initiative.
With help from Premier President Marie Keramati, ASCF signed its first apartment lease in March 2007, with furniture and house wares generously donated by the Houston-based company. Since that time, the apartment has been occupied almost 100% of the time, only vacated for cleanings between its residents.
At the beginning of 2008, ASCF expanded the program to include a second apartment, which also has been occupied continuously by out of town patients (and their families) in desperate need of housing in the Houston area. ASCF Tangible Support Council Chairs Danetta Beaushaw and Margaret Ling both of whom have had family members claimed by the disease, hope to expand the program even more in the future as the need arises.
ASCF's corporate apartments are offered to sarcoma patients and/or their families free of charge. However, it is not just the financial toll that is lessened for our program's participants, but the emotional one as well. "Out of the many trips we've made to Houston for Eric's treatment, staying with you has by far been the best experience we've had to date...[the apartment] has literally been our home away from home," stated co-survivor Carrie Riley. Her husband Eric adds "when I get back on my 'feet' you will hear from me. I WILL find a way to give back to ASCF!" In fact, Eric already has. He is not just surviving, but thriving. Even after countless rounds of chemo and a leg amputation in 2007 (when the family stayed with ASCF), the Riley family's spirits are soaring....even more so since being declared "cancer free" in early 2008.
Unfortunately, no other program of its kind exists in the area and the need is tremendous. The emotional and financial toll taken on patients who receive treatment away from home (a necessity for most sarcoma patients) is inconceivable. "Imagine being diagnosed with a rare form of cancer and then being told you must seek treatment away from home, away from your loved ones, away from your entire support network" stated ASCF Founder Tom Amschwand. Fortunately, ASCF has stepped in to offer just a little support in this area. "We can't even believe the gratitude that we get from our patients and families....it certainly lets us know we're on to something good," states Bellinger.
For more information on the ASCF corporate apartment program, contact the ASCF office at (832) 367-9474 (WISH) or e-mail ASCF.
Positron Emission Tomography (PET) was much more sensitive and more accurate than conventional imaging methods in detecting response to treatment in sarcoma patients, according to a UCLA study that is among the first to directly compare PET to CT scanning.
The study has important implications for patients. If conventional imaging fails to detect treatment response, oncologists may discontinue therapies that in fact are working and study participants may be dismissed from clinical trials that are actually helping them. Conversely, if a patient is not responding, using PET scanning to evaluate response could help prevent them from undergoing toxic therapies that aren't working. The study, conducted by a multidisciplinary team of scientists at UCLA's Jonsson Cancer Center, appears in the February 1, 2008 issue of Clinical Cancer Research. Researchers found that standard size-based evaluation methods only identified 20 percent of responders, while PET was able to identify responders 100 percent of the time.
Current practice evaluates response to treatment using RECIST, or Response Evaluation Criteria in Solid Tumors. Patients are scanned using CT or MRI before and after treatment and the scans are then compared to determine if the tumor has decreased in size. If there is no change, the disease is considered stable. A partial response is tumor shrinkage of more than 30 percent, while a total response is tumor elimination.
"We knew from our considerable experience with neoadjuvant therapy (treatment before surgery) in sarcoma patients, that measuring tumor size correlated poorly with response," said Dr. Fritz Eilber, an assistant professor of surgery, director of the Sarcoma Program at UCLA's Jonsson Comprehensive Cancer Center and senior author of the study. "We have removed many tumors that have not changed in size with treatment or have even grown, but are completely dead on pathologic analysis. Just because the tumor doesn't shrink doesn't mean the treatment didn't work." Eilber and his team of top scientists, including PET scan inventor Michael Phelps, wanted to find a better way to predict response so patients would not have to undergo unnecessary treatment or be removed from therapies that were working. Since operable sarcomas are treated before surgery with chemotherapy and radiation, it was the ideal cancer in which to compare PET scanning to CT.
CT and MRI scans provide anatomical pictures of the body, while PET images many different biochemical functions in real time, acting as a sort of molecular camera. Unlike CT and MRI, PET doesn't just take a snapshot of body structures, it watches what the body is doing. In this study, researchers measured the metabolic activity of the tumor, or how much sugar was being consumed in the cancer cells. Cancer cells, because they're growing uncontrollably, use much more sugar than do normal cells. Using a specific PET probe that measures sugar metabolism, researchers could determine whether the cancer cells in the tumor were still alive and dividing after chemotherapy and radiation, Eilber said.
Researchers used a PET/CT scanner in the study, a technologic advance that combines the imaging modalities in one machine. The combined scanner allowed researchers to directly compare the before and after treatment scans for both tumor size and metabolic activity. "PET was much more sensitive in picking up response than size-based RECIST," Eilber said. "RECIST missed a large percentage of patients that actually had a response. PET picked up all of the responders." The study also has important implications for long-term patient follow-up, Eilber said. PET scanning quickly tells doctors how much of the tumor is dead. The amount of tumor that dies during treatment correlates with patient outcomes. If a large amount of the tumor is killed during treatment, sarcoma patients experience increased survival and lower recurrence rates. This form of monitoring response to treatment also will be important in evaluating patients whose cancers have spread throughout the body, Eilber said. "Evaluating biologic responses to therapy is the future of cancer imaging," he said.
Eilber and his team already are working to confirm their results in a larger study and are testing new metabolic tracers to assess treatment response. The study represented a true multidisciplinary effort, Eilber said. Experts from surgery, medical oncology, radiology, pathology, orthopedics, nuclear medicine and biostatistics comprised the research team.
Soft-Tissue Sarcoma Outcomes Vary Widely by Race, Ethnicity The treatment and survival of adults with soft-tissue sarcoma of the extremities varies widely by race and ethnicity. Compared with whites, the disease-specific mortality rates are significantly higher in blacks and significantly lower in Asians, according to authors of a paper in the March 1st issue of Cancer. To examine the effects of race and ethnicity on tumor characteristics and outcomes, Dr. Steve R. Martinez, of University of California at Davis Cancer Center in Sacramento, and colleagues used the Surveillance, Epidemiology, and End Results (SEER) database to identify 6406 patients with extremity soft-tissue sarcoma treated between 1988 and 2003. Included were 4636 whites, 773 blacks, 696 Hispanics, and 411 Asians.
"Hispanics tended to be diagnosed with extremity soft-tissue sarcoma at a younger age than their white, black, and Asian counterparts, which may suggest either a biologic predisposition or an environmental contributing factor for the development of these tumors," the authors suggest. Hispanics and blacks were less likely to receive radiation therapy than other groups, despite presentation with larger tumors. Hispanics tended to have higher rates of well-differentiated to moderately differentiated tumors, whereas blacks presented with more poorly differentiated or undifferentiated tumors. "Hispanics, although they are subject to several of the same socioeconomic factors and exhibit several of the same poor tumor prognostic factors and comorbidities as blacks, displayed a disease-specific survival that, although not significantly superior to whites, clearly trended in that direction," the investigators report.
There is no simple explanation for the racial and ethnic differences observed in treatment outcomes in patients with primary extremity soft-tissue sarcoma, the researchers state. Genetics, sociodemographics, and access to specialty care all likely play a role. "The identification of disparities represents a unique opportunity to improve care by addressing the issues leading to the disparities," Dr. Martinez told Reuters Health. "Extremity soft tissue sarcomas are rare and can be difficult to diagnose," he added. "If possible, patients should be referred to a nearby Cancer Center or center of excellence where patients can be treated by a multidisciplinary team of experts." "We are going to narrow our focus to identify potential genetic or epigenetic explanations for the differences in survival noted in this study," Dr. Martinez said. "In other words, are the survival differences between racial/ethnic populations due to the fact that these populations have, on a genetic and epigenetic level, very different diseases?"
American Psychosocial Oncology Society Referral Helpline The American Psychosocial Oncology Society (APOS) offers a national resource provided to help people with cancer and their caregivers find counseling services in their own communities. APOS has a toll-free Helpline through which cancer patients, caregivers and advocacy organizations may obtain referrals for local counseling services throughout the United States. This referral program aims to connect cancer patients and their caregivers to psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress. To request a confidential referral, please call: Toll Free 1-866-276-7443 (1-866-APOS-4-HELP) or you may send an e-mail to the Helpline. The following information is requested: caller's name (spelling of the last name), contact phone number(s), including area code, patient’s city/town and state of residence, area code of the location where you are searching for a referral, patient’s cancer diagnosis, Calls are accepted 24 hours a day through a voicemail system and then handled by trained staff members who have access to a national directory of community mental health resources. If no resources can be identified in the patient’s community, a mental health professional from the Helpline staff will provide counseling via telephone to callers in crisis. Helpline inquiries will normally be returned within 24 to 48 hours.
A Gift from the Miles Alpern Levin Philanthropic Fund and the Joanna McAfee Childhood Cancer Foundation It is not uncommon for parents and families of children who lose their battle with cancer to want to give to other families confronting this challenge. Joanna McAfee, a "beautiful, sweet, strong, courageous child", to quote her parents, was one such warrior. She was diagnosed with stage four alveolar rhabdomyosarcoma when she was three years old and, like a trooper, fought this disease until she succumbed three years later. Her parents, Jeff and Misty, established a foundation in her memory; one of the purposes is to support other families in just about any way possible. Nancy Levin recently wrote to us, “Our son, Miles, confronted the same disease with the same outcome. We, too, are looking for ways to assist other families, and have established a fund for this purpose. A financial gift was made to the McAfee's Foundation from the Miles Alpern Levin Philanthropic Fund and was to be given to a family, selected by the McAfees. A six year old patient, also diagnosed with rhabdomyosarcoma, and her family received the gift. Misty informed me that this girl's mom cried when she learned of the gift and who it was from. The interest and concern was, I'm sure, as valuable as the monetary value. Knowing others' care is worth its weight in gold.”
Cancer Vaccine Consortium and Cancer Vaccine Collaborative Unite under the Cancer Research Institute The Cancer Research Institute (CRI) announced today that it has brought together the Cancer Vaccine Consortium, a program of the Sabin Vaccine Institute, and the Cancer Vaccine Collaborative, a program of the Cancer Research Institute (CRI) and the Ludwig Institute for Cancer Research (LICR), to form the leading initiative on cancer vaccines. This joint effort establishes a unified voice in the cancer vaccine field and provides a major new resource to academia, industry, and governmental agencies involved in cancer vaccine discovery and development.
The Cancer Vaccine Consortium, now administered by the Cancer Research Institute, is an international association of 67 pharmaceutical, biotechnology, and academic institutions engaged in cancer vaccine and immunotherapy research and development. The Cancer Vaccine Collaborative is a coordinated global network of 22 academic clinical and laboratory centers with strong immune monitoring capabilities and the capacity to conduct early-phase clinical trials.
Linking these programs under a single organization offers great synergism for academic and industrial collaboration and provides improved capabilities for all its members. Together, the two programs aim to address the needs of the immunotherapy community with the goal to accelerate discovery and development, and facilitate regulatory discussions about cancer vaccines and other immunotherapies. The objectives and activities of the new Cancer Vaccine Consortium will encompass:
Lloyd J. Old, M.D., chairman of the Ludwig Institute for Cancer Research, director of the Cancer Research Institute Scientific Advisory Council, and director of the CRI/LICR Cancer Vaccine Collaborative, will also serve as director of the CRI Cancer Vaccine Consortium and chairman of its Executive Committee. Axel Hoos, M.D., Ph.D., medical leader in Immuno-Oncology at Bristol-Myers Squibb Company and former president of the Sabin Vaccine Institute’s Cancer Vaccine Consortium, will serve as co-chairman of the Cancer Vaccine Consortium Executive Committee.
“The time is ripe for stronger alliances between academia and industry,” says Dr. Old. “Integrating the clinical trials network of the CRI/LICR Cancer Vaccine Collaborative with the strengths of the pharmaceutical, biotech, and academic membership of the Sabin Cancer Vaccine Consortium will allow the Cancer Research Institute to present a single, united front on cancer vaccines to the scientific and medical communities. This alignment strengthens the overall position of all of its participants and establishes a unified voice that can represent the needs of a broader constituency.” Dr. Hoos anticipates that the joint effort will play a key role in facilitating knowledge exchange and creating a fertile environment for advances in cancer immunotherapy. “The Sabin Vaccine Institute’s Cancer Vaccine Consortium had very successfully begun to address issues of clinical paradigm development, immune assay harmonization, and regulatory dialogue,” Dr. Hoos says. “Based on the Consortium’s track record of bringing stakeholders together, identifying needs, and addressing them through focused initiatives, the alliance with CRI promises growth and delivery of further concrete solutions, which can be adopted widely.” The Cancer Research Institute has fostered the fields of immunology and tumor immunology over the past 54 years through the provision of research and training grants to academic investigators, and dedicates approximately 35 percent of its annual research budget to the support of cancer vaccine research. “By incorporating the Sabin Vaccine Institute’s Cancer Vaccine Consortium into the Cancer Research Institute’s clinical investigation efforts, we are expanding CRI’s reach and ability to deliver accelerated progress in this growing field,” says Jill O’Donnell-Tormey, Ph.D., executive director of the Cancer Research Institute. “That should be very appealing to the Institute’s donors who wish to make an impact on cancer with measurable outcomes that can be realized within a short period of time,” she adds.
See-through fish is created to give a clearer idea of how cancer spreadsA transparent zebrafish has been engineered to allow scientists to watch how cancers develop and behave inside the body in real time. Each internal organ of the fish and its bones can be seen clearly throughout its life. Observations have shown already that the spread of cancer cells is not random – they home in on a particular area. Researchers who bred the transparent fish at the Children’s Hospital, Boston, in the United States, were able to watch as melanoma cells left the abdominal cavity and made directly for the skin, where the disease took hold. Before the innovation, scientists were reliant on getting a snapshot of the spread by dissecting specimens. Richard White, the lead researcher in the project, reported in the journal Cell , said that cancer changed so rapidly in the body that dissection was “bound to miss something”, but the transparent fish allowed the whole process to be witnessed. Zebrafish were chosen for their strong genetic similarities to human beings. Having seen that the cells home in on one region of the body, scientists have started to look at how it might be possible to modify them so they lose all sense of direction.
The aim of this study was to assess symptoms consistent with posttraumatic stress (PTS; cognitive intrusions, avoidance, arousal) related to the child's illness, and generic distress (anxiety, depression) in parents of childhood cancer patients. Outcomes were compared to normative and relevant reference data, and analyzed for their dependence on time passed since diagnosis. Swedish parents (266 mothers, 208 fathers) were recruited at two centers. Data from a clinical sample of posttraumatic stress disorder (PTSD) patients and parents of healthy children were used for comparison. The Impact of Events Scale (IES-R) was used for assessing PTS symptoms, and self-report scales for anxiety and depression. Elevated stress and generic distress varied as a function of time from diagnosis. Up to 12% of parents for whom >5 years had passed since diagnosis still reported equally, or more intrusive thoughts, avoidance and arousal when contrasted to patients suffering from PTSD. Parents of recently diagnosed children had more cancer-related intrusive thoughts than those of long-term survivors. Heightened anxiety and depression was most prominent in mothers and fathers up to 2.5 years after diagnosis. In conclusion, severe generic distress characterizes the first years after diagnosis, and initially common PTS symptoms are found in a considerable portion of parents years after diagnosis. Clinically, attention should be paid to continuous parent support needs. Individual variation vis-à-vis distress vulnerability should be acknowledged, and presupposed gender differences avoided. When treatment situation asks the most of parents' collaboration, many are under pressure of severe stress.
Understanding high-quality cancer care - A summary of expert perspectives The Institute of Medicine’s (IOM) report “Crossing the Quality Chasm” proposed 6 aims for high-quality healthcare: effective, safe, timely, efficient, equitable, and patient-centered, and emphasized care coordination. Through interviews with nationally recognized experts in healthcare quality, perspectives on barriers and facilitators to achieving these aims for cancer patients were elicited in this report. In all, 23 peer-nominated experts with diverse backgrounds in policy, healthcare, patient advocacy, and research were individually interviewed. They were asked about barriers and facilitators to achieving high-quality cancer care, and information technology or other innovations that might improve the quality of cancer diagnosis, treatment, and surveillance. Interviews were tape-recorded and transcribed. Two analysts independently reviewed and coded each transcript using ethnographic software to elucidate key themes. The Results were as follows: The major perceived barrier to providing high-quality cancer care was unnecessary variation in cancer care because of lack of standardization or adherence to guidelines during diagnosis, treatment, and surveillance. Additional barriers included insufficient teamwork and communication among multidisciplinary care teams, lack of patient awareness and empowerment, diagnostic delays during provider transitions, and excessive reimbursement for treatment. Experts suggested improving cancer patients' experiences by standardizing care, adhering to guidelines, and using patient navigators and an interoperable electronic medical record accessible to patients and providers at multiple facilities. Some of these solutions have been developed and tested, whereas others have not. The authors hope that these suggestions provide impetus for new research, accelerating progress toward achieving the IOM's vision for high-quality cancer care.
The Sarcoma Foundation of America's Patient Registry The SFA Sarcoma Patient Registry records the significant events of the history and treatment of patients newly diagnosed with Sarcoma. The Registry is a data collection and reporting system managed by The Sarcoma Foundation of America. The Registry’s endeavor is to collect, store, analyze and interpret data on persons with sarcoma. We invite you to participate in our efforts to make the Sarcoma Patient Registry information as accurate and comprehensive as possible. Click here to download a PDF copy of the Sarcoma Patient Registry Brochure.
Curative therapy for childhood cancer has improved significantly in the last 2 decades such that, at present, 80% of all children with cancer are likely to survive 5 years after diagnosis. Prevention, early diagnosis, and treatment of long-term sequelae of therapy have become increasingly more significant as survival rates continue to improve. Cardiovascular disease is a well-recognized cause of increased late morbidity and mortality among survivors of childhood cancer. The Children's Oncology Group Late Effects Committee and Nursing Discipline and Patient Advocacy Committee have recently developed guidelines for follow-up of long-term survivors of pediatric cancer. A multidisciplinary task force critically reviewed the existing literature to evaluate the evidence for the cardiovascular screening recommended by the Children's Oncology Group guidelines. In this review the authors outline the clinical manifestations of late cardiovascular toxicities, suggest modalities and frequency of monitoring, and address some of the controversial and unresolved issues regarding cardiovascular disease in childhood cancer survivors.
V5N1 ESUN Copyright © 2008 Liddy Shriver Sarcoma Initiative.
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