Patient Feedback Requested: Osteosarcoma Surgical Choices and Results
Dr. Eric Henderson of Dartmouth-Hitchcock Medical Center is seeking input from osteosarcoma patients and their families as he studies surgical choices and outcomes. If you are willing to help shape this research, please send an e-mail to JC that includes the following information:
- Are you the patient/survivor or parent?
- What was the age of the patient when diagnosed?
- Where was the tumor located?
- What was the ultimate surgical choice?
- Before surgery, what questions can a physician ask a patient in order to learn about that patient's life and to present surgical options based on the patient's lifestyle and needs?
- Before surgery, what do you wish you had known about other patients who previously had a surgery similar to yours?
- What functional issues do you think are most important for patients who have a a tumor in the same location as yours?
An Opportunity for Patients to Accelerate LMS Research
The LeioMyoSarcoma Direct Research Foundation is reaching out to the patient community to collect tissue samples for vital LMS research. This is the second tissue drive that LMSDR has conducted, and it provides a unique opportunity for LMS patients to create a resource of immense value. The resulting tissue bank will allow investigators around the world to access enough tissue to conduct promising research.
The Initiative encourages everyone who has been diagnosed with LMS to consider participating in this project. Learn more about sending your tissue sample.
V10N2 ESUN Copyright © 2013 Liddy Shriver Sarcoma Initiative.
Community Update: Selected Archives
Dan’s House - A "Home Away From Home"
Most of us are touched by cancer at some point in our lives, either directly or through a family member or close friend. However, it’s usually with adults and elderly family members (older parents or grandparents) where we’re most familiar with cancer. The average age of a woman with breast cancer is 61 and a man with prostate cancer is 67. The incidence rate of these cancers is very high. For instance, each year a ¼ million women (and men) get breast cancer.
On the other end of the spectrum, how can our hearts not be touched by pictures of little ones fighting cancer? Parents devote their lives to nurturing and protecting their children, and it’s devastating when cancer reminds us that there are some things we can't control. In 2007, ten thousand four hundred children under the age of 15 had cancer, with the most prevalent being leukemia.
However, there’s another age demographic that we rarely hear about with cancer, an age group that is "stuck in the middle." They are stuck, not because they don’t get cancer, but because there hasn't been a focus on their age group until recently. And they are usually force-fit into the pediatric or older adult world of oncology, neither of which is right for them. Each year, more than 72,000 Adolescent & Young Adults (AYAs - defined as ages 15 to 39) will have cancer. There are 20,000 new AYA cases diagnosed each year, twice as many as in the pediatric world.
My son, Dan, was one of those AYAs. He was diagnosed with osteosarcoma at age 17 in the summer of 2006 before his senior year of high school. Dan’s treatment schedule was grueling and initially successful, but a local recurrence and lung metastasis led his local medical team to deem him incurable early in 2008. But Dan wasn’t ready to give up, and we spent months living in hotels and apartments as he obtained expert care, far from home, at Houston’s MD Anderson Cancer Center. While MDACC gave Dan hope and a unique perspective on life, there was no stopping this monster, and Dan spent the last three months of his life in the Philippines receiving a trial drug that, although made in the US, was only available in Manila because all US trials were closed.
During these trips, literally around the world, Dan experienced isolation and separation from family and friends. While all of his friends went on with their lives – to school, jobs, relationships, and fun on Saturday nights – Dan was stuck in his medical world and longed for a return to a life of normalcy. Dan and his mom started to brainstorm about a place where others in his age group fighting cancer could gather together, to support each other, to create a sense of community and try and regain a little bit of that normalcy.
This was the genesis of what has become known as Dan’s House of Hope (DHOH). Through supportive programming and housing targeted to AYAs, we strive to give a little bit of "normal" back to AYAs dealing with cancer. While fine organizations like Ronald McDonald House provide needed housing for youngsters, once an AYA turns 19, with few exceptions, they can no longer take advantage of RMH. DHOH will go above and beyond to fill that gap - providing programming such as organized events and outings, guest speakers, music and art sessions, shopping, or just a chance to "hang out." More than just housing, DHOH will be a home away from home.
Our mission:
Dan's House of Hope, Inc. is a nonprofit corporation dedicated to reducing the financial burden of young adult cancer patients and their families who must travel lengthy distances from home to receive medical treatment. Dan's House of Hope is committed to providing comfortable, affordable, temporary accommodations and sense of community that promote healing in a supportive, hope-filled, home away from home environment.
We are founded on 4 pillars:
- Education & Awareness: Through community events, many of which are sponsored by students at the high school and college level, we are alerting AYAs to watch out for the warning signs of cancer and to be their own advocates. One in every 168 Americans aged 15 to 30 develops cancer. While pediatric and older adult cancer survivability rates are improving, they have been stagnant for the past 20 years for AYAs, typically due to delayed diagnosis by primary care physicians, as cancer isn’t expected in this age group. AYAs are the most under or uninsured age group, and coupled with a sense of invulnerability, this leads to delayed care, diagnosis and ultimately a poorer prognosis. Seventy-two thousand (72,000) AYAs will have cancer this year; we intend to improve these numbers through increased education of AYAs and caregivers.
- Fundraising: Dollars raised allow DHOH to focus on providing tangible benefit now – through printing of literature, programming related expenses, etc. Programming is a critical component of our awareness message, and fundraising supports those efforts. DHOH also has temporary housing available in Houston, but our longer range goal is to build facilities dedicated to the unique needs of AYAs near major cancer centers around the country. While most gifts received are general operating funds, we have received large gifts that are restricted – for instance, from Houston, for a building in Houston. A capital campaign later this year will focus on the bricks and mortar, and we are hoping to break ground late next year.
Recent fundraisers have been tied together with Education & Awareness events. Most recently, a high school student organized a jazz concert with school bands that raised thousands of dollars and gave us the opportunity to present the somber statistics of AYA cancer. And of course, an Annual Campaign is a critical element to our ongoing mission.
- Housing: When our son Dan’s doctors in Wisconsin ran out of options, Dan wasn’t ready to quit. Research took us to the best cancer care treatment center in the country (according to US News & World Report), MD Anderson Cancer Center (MDACC) in Houston. In the waiting room at MDACC one day in 2009, Dan met Michael and Rick – these three young men lived 30 minutes from each other in Wisconsin yet never met until in Houston for treatments. We knew the need was great in Houston, and that little story and a needs assessment proved it. At MDACC alone (one of several superior cancer centers in what is known at the Texas Medical Center south of downtown Houston) it is expected that 7,800 AYAs will be treated for cancer multiple times in 2013. A quarter of those come from more than 100 miles from Houston, and another quarter of those come from outside the state or outside the country. We are in the early stages of organizing ourselves for needs assessments near other major cancer centers in New York, Los Angeles, Seattle and elsewhere. However, our initial focus is on Houston.
As an interim step while new building plans take shape, we are planning on making apartment space available to AYAs in the summer of 2012.
- Travel In Peace (TIPS): Whether through direct financial assistance or aligning patients with existing resources, DHOH will help patients get where they need to be for the best care – regardless of where that is in the country.
We have had many terrific individuals from around the country step forward to help us in our mission. Most recently, the Executive VP and CFO from a major Houston energy company volunteered to fund programming and to sponsor several AYAs on trips to speak at major conferences. Our volunteer base for our golf outings and other events has been strong, and the list of those wanting to help at the first and future house continues to grow.
Just recently, we were contacted by the advocate for a 20-year-old woman from Georgia. She has been fighting osteosarcoma for years, and recently had a relapse that has put her life in peril. She will be traveling to Houston in the coming days for care, and she is exactly the type of person that DHOH could benefit by providing a support group and safe housing in a foreign (but welcoming) city. She recently posted the following on her blog:
You’ve probably heard the saying, "The Journey is the destination." I absolutely love that saying, because it so beautifully depicts how we should go about living life. For the sake of brutal honesty, I may not make it through this battle. That’s actually a very good possibility. But guess what. The destination is not what matters- it’s how richly lived and loved the journey was, and God knows I have had one of the best journey’s I could ever, ever hope for. THAT is where I find peace with this.
For this young lady, and for the many whom we know will follow her, our pledge is to do what we can to ensure enjoyment of the journey. Until important research, such as that funded by the Liddy Shriver Sarcoma Initiative, puts us out of business, our passion of supporting AYAs will continue. If you’d like to join us, please visit our website or contact us.
V9N3 ESUN Copyright © 2012 Liddy Shriver Sarcoma Initiative.
Dealing with a Life-Changing Diagnosis
The following papers and guidelines will be of interest to many who deal with the life-changing effects of a sarcoma diagnosis.
What Happens Now? Care for Cancer Survivors After Treatment
The growing population of adults living with a history of cancer in the United States mandates attention to quality of life and health in this group, as well as to the implementation of evidence-based interventions to address psychosocial and physical concerns at completion of medical treatments and beyond. The goals of this article are to document the need for attention to psychosocial domains during the re-entry and later phases of the cancer survivor trajectory, offer an overview of current evidence on efficacy of psychosocial interventions during those phases, and offer suggestions for application and research regarding post-treatment psychosocial care.
Psychosocial Care of Adolescent and Young Adults with Cancer
The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group—the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and other life-threatening or chronic diseases, particularly the positive effects of peer support, technology-based interventions, and skill-based interventions. The article concludes with recommendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.
NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology
The National Comprehensive Cancer Network® (NCCN®) has issued new NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Adolescent and Young Adult (AYA) Oncology. AYA patients are defined in the guidelines as individuals 15 to 39 years of age at initial cancer diagnosis. The guidelines address the critical issues that AYA patients with cancer and their caregivers encounter at diagnosis, during treatment, and after therapy. A free account/login at the NCCN website is required to see the practice guidelines.
Guidance on Genetic Testing and Sharing Genetic Information
Sarcoma patients and caregivers might be interested in this report from the Royal College of Physicians in the United Kingdom which aims to provide up-to-date guidance on issues of consent and confidentiality arising in clinical genetic practice. The first version of this guidance was aimed specifically at professionals within the specialty of clinical genetics and was partly prompted by proposed legislative changes such as those governing the use of human tissue. This new report recognizes that many of these issues are becoming increasingly relevant for all medical specialties as clinical genetic practice branches out into mainstream medicine, and outlines relevant changes in legislation in the UK and professional guidelines. The main section of the report introduces general principles of consent and confidentiality in clinical genetic practice and expands on these using clinical case scenarios as illustrations. This section explores the issues involved in taking a family history and in the giving and sharing of genetic information and samples. The appendices outline and examine relevant recent changes in legislation in the UK. The guidance also takes account of the revised General Medical Council (GMC) guidance on consent and confidentiality and the House of Lords Science and Technology Committee Inquiry on Genomic Medicine (2009). Throughout this document, the underlying ethical and legal principles are illustrated using hypothetical (but based on real) clinical cases to highlight key points. Each case should be judged on its own facts, as the clinical scenarios are intended to guide rather than dictate practice.
Guide for Patients with Advanced Cancer
In a partnering of oncologists, patients and patient advocacy groups, the European Society for Medical Oncology European Society for Medical Oncology (ESMO) has produced a booklet called: A guide for patients with advanced cancer, how to get the most out of your oncologist. The booklet is designed to help patients with advanced cancer and their treating oncologists.
For patients and their family members, it provides practical advice regarding cancer care, communicating with oncologists, important questions to ask, getting information and the challenges of living with an advanced cancer.
For practicing oncologists, the guide will serve as a tool to help focus important discussions with their patients and to assist in addressing the many issues their patients are confronting.
Help for Those seeking Pediatric Proton Therapy
Many treatment protocols for pediatric sarcomas include a significant phase of radiation treatment. There are advantages of proton therapy for pediatric patients as compared to traditional radiation or even Intensity-Modulated Radiation Therapy (IMRT). Children’s bodies are still growing and developing making children more susceptible to radiation-induced damage to healthy tissues and organs. Protons are physically superior to traditional radiation and can offer the pediatric patient greater accuracy in targeting the tumor – within 1 millimeter. Protons have no exit dose as their depth is controlled.
Recent studies have shown excellent results with protons in controlling aggressive tumors such as sarcomas, and also reducing damage to healthy tissues. With less radiation to the child’s body, protons lower the risk for developing secondary tumors later in life. There are also fewer side effects from this type of treatment as most children are simultaneously undergoing chemotherapy.
Part of the reason so few sarcoma pediatric patients receive proton therapy is the lack of knowledge and information. The Pediatric Proton Foundation is designed to help families, at any stage of treatment, make those quick unexpected decisions of what to do when faced with childhood cancer. Susan Ralston, Executive Director of the Foundation, said, "We help families gain access to protons." We encourage you to contact her for information about the Foundation’s services.
February 2011
New opportunity to participate in genetic research for chordoma
by Josh Sommer of the Chordoma Foundation
Since 1996 researchers at the Genetic Epidemiology Branch (GEB) of the National Cancer Institute (NCI) have been studying families with multiple members affected by chordoma in order to identify genes responsible or causing chordoma. Last year researchers at GEB and Duke University discovered that chordoma in four families was caused by one extra inherited copy of a gene called brachyury. However, several additional families in the NCI study had no abnormalities in the brachyury gene, suggesting that additional genes could be responsible for causing familial chordoma.
GEB researchers are looking for more chordoma families to participate in research on familial chordoma. The goal of the research is to identify other genes that increase the risk of family members developing chordoma. GEB researchers are also looking for people who are the ONLY person in their family who has ever been diagnosed with chordoma to participate in research on sporadic chordoma (also called non-familial chordoma). One goal of this research is to find out whether genes for "familial chordoma" play a role in causing chordoma to develop in people without a family history of this cancer. To answer this question, GEB has opened a new study for sporadic chordoma patients, which aims to recruit at least 100 participants.
Patients with familial chordoma, or sporadic (non-familial) chordoma, or close relatives who wish to inquire about participating in this study should contact Ms. Stephanie Steinbart at 1-800-518-8474. More information is also available on the GEB chordoma research webpage.
Synovial Sarcoma Survivors
by Sarah Ann Cuy
I am one of the moderators of an online patient community that provides support for people living with synovial sarcoma, as well as survivors and families affected by synovial sarcoma. Being a patient of a serious disease is difficult enough; being a patient of a rare disease adds loneliness to the situation. These patients desperately need to connect with others like them, and that's where our patient community comes in. Members of our patient community provide support to each other during the most difficult of times. Our community has helped many members connect, but since there are millions more to reach around the world, we need your help to spread the word. How can you help these patients in need?
The International Sarcoma Symposium
The Liddy Shriver Sarcoma Initiative was pleased to participate in the International Sarcoma Symposium held on February 4, 2011, in Oslo, Norway. Dr. Ola Myklebost and Bruce Shriver gave the opening remarks, which can be viewed online (the video takes a moment to load). Presentations by physicians and researchers are also available online.
V8N1 ESUN Copyright © 2011 Liddy Shriver Sarcoma Initiative.
October 2010
An Update from the QuadW Foundation
In 2006, the WWWW Foundation, Inc. (QuadW) was created when we lost our son, brother and dear friend, Willie Tichenor, to osteosarcoma. Our board is comprised of Willie’s parents, brother, seven of his closest friends and one of his doctors
Our largest grant ($643,000) has been in partnership with CureSearch, the foundation affiliate of the Children’s Oncology Group, to create the QuadW Osteosarcoma Bisostatistics and Annotation Office (QuadW OBAO). This project provides infrastructure for the collection and storage of osteosarcoma patient samples by providing personnel support and resources devoted to sample annotation, patient follow-up, and biostatistics.
Dr. Chand Khanna, National Cancer Institute Center for Cancer Research Senior Scientist and QuadW OBAO project manager, noted, "Most noteworthy of the ongoing accomplishments of the QuadW OBAO was the recent announcement at the Children’s Oncology Group Fall 2010 Meeting, that the clinical annotation of the osteosarcoma biospecimen repository had been taken from less than 5% complete to over 90% complete. This accomplishment has markedly enhanced the value of the biospecimen repository. The immediate impact includes the opportunity to complete pending statistical analysis for 14 osteosarcoma biology studies that have in some cases were halted over 5 years ago due to insufficient clinical annotation of the banked materials."
"A second and similarly important advance supported by the QuadW OBAO has been the restructuring of the previously antiquated, inefficient, and slow process of requesting tissues from the osteosarcoma biospecimen repository. On April 27, 2009 the QuadW OBAO in collaboration with the intramural NCI’s Center for Cancer Research released a web-based solution. Through this web-enabled portal, investigators interested in the study of osteosarcoma have been able to request samples in support of hypothesis driven research in studies. This system provides efficient review of requests, statistical analysis for feasibility, and reporting of results to investigators."
Left: QuadW board members visiting with COG chair Dr. Greg Reamon and chair-elect.
Right: Dr. Peter Adamson at the September COG meeting.
We at QuadW are very hopeful that efforts of all those associated with the QuadW Osteosarcoma Bisostatistics and Annotation Office will translate into a better understanding of osteosarcoma, resulting in more therapeutic options and improved outcomes for patients. We also look forward to extending this model to other sarcoma disease groups that would benefit from this type of support.
V7N5 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.
August 2010
GIST Summit to be Held
GIST Support International, in collaboration with Dr. Jon Trent, would like to extend an open invitation to the 2nd GIST Summit at M.D. Anderson Cancer Center to be held on September 25th. It will be a full day, beginning at 8:00am with a GIST 101 pre-session. Talks on all aspects of GIST treatment and disease management follow throughout the day, until the final talk about future treatment directions which ends at 5:00pm.
The summit will build on last year's success, when there were more than 100 participants from all over the United States. Everyone with an interest in GIST is welcome to come. Lunch and refreshments will be provided, and there is no charge to attend. For more information and to pre-register, see the GIST Summit web page, or contact Barbara.
V7N4 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.
April 2010
The Team Sarcoma Everyday Heroes Competition
Everyone who has dealt with sarcoma knows a hero or two. Heroes support, encourage and inspire us in extraordinary ways. Just when we need them most, they are there. They challenge us, comfort us, and give us hope.
The Team Sarcoma Everyday Heroes competition invites you to tell us about your hero. Entries will be published at the Team Sarcoma website, and three winning submissions will be chosen. A donation will be made to sarcoma research in honor of each winner's hero, and each winner will choose which type of research their prize will fund.
Please spread the word about this competition within the sarcoma community. The deadline for submissions is June 1, and everyone who has been touched by sarcoma is invited to participate.
The Wendy Walk
The Wendy Walk to fund sarcoma research will be held in Los Angeles, New York, and Miami on April 18, 2010. The walks were created and organized by Ali, Matt and Jackie Landes, to support their mom who has liposarcoma. She is currently undergoing treatment as part of a clinical trial.
V7N2 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.
December 2009
New Book to Benefit the Liddy Shriver Sarcoma Initiative
by Mary Sorens
Scott Alcott, a Ewing's sarcoma survivor, published I'm Not Lance! this month. In a surprising announcement, he pledged to donate all of the book's proceeds to the Liddy Shriver Sarcoma Initiative. When we heard this exciting news, we set out to learn more about Scott's journey and his new book.
At the age of 40, Scott was diagnosed with an unusual case of Ewing's sarcoma. He explained: "Ewing's normally hits younger people of course, but mine was strange for 3 other reasons: there was no bone involvement (soft tissue only); the tumor was in the deep tissue of my face (head and neck Ewing's is rare); and the tumor had none of the known gene translocations."
Mary: Why did you write I'm Not Lance! ?
Scott: "People kept sending me Lance Armstrong's book for inspiration, and I found it hard to relate to. Lance's endurance, discipline, and competitive spirit is legendary and hard to emulate; I wanted to write a book for regular people."
Mary: So...is this a book about your cancer journey?
Scott: "I'm Not Lance! is not an autobiography. It has many moments of controversy and sometimes blunt assessments. I've dared to say what patients, supporters, and doctors actually think, with an eye on raising understanding and better dynamics between these wonderful and caring people."
Mary: What do you hope readers will gain from the book?
Scott: "I hope this book can make others feel better understood, supported and tooled for the fight. I'm Not Lance! is for patients and their supporters; it gives a tour of the practical, social, and psychological challenges facing all members in our community and tips for how to manage those challenges."
Mary: Why did you choose to give the book's proceeds to the Liddy Shriver Sarcoma Initiative?
Scott: "When I was scared, overwhelmed and confused, I found an amazing group of people supporting each other at the e-sarc Yahoo user group. Bruce Shriver, Mimi Olsson, and scores of others welcomed me in and helped me until I was able to begin helping others. Liddy and her family seem to infect others with positive values and that impressed me."
Scott Alcott's book, I'm Not Lance!, is available in paperback and digital download and will soon be listed on Amazon.com.
"Team Bob" Competes in the Inaugural Las Vegas Rock and Roll Half Marathon
The "Team Bob" challenge effort, took place on Sunday, Dec 6th. Seven people raced in the Inaugural Las Vegas Rock and Roll Half Marathon (13.1 miles). The race course was done up in grand Vegas style. There were running "Elvi", fireworks, run through weddings, skydivers... even caged white Bengal tigers at the start line.
Team Bob wore Team Sarcoma shirts and "Sarcoma Knows No Borders" wristbands all over town. During the race, a team member was approached by a girl named Kim. Her 29 year old boyfriend was recently diagnosed with a sarcoma in his foot. She tearfully confided their devastation and bewilderment as to what to do next. She was thrilled to find someone else who had heard of sarcoma.
The Team had a terrific experience to aid a deserving charity.
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V6N6 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.