Patient Resources

Concentrating On The Cure

OSI Connect
(formerly OSI Hotline)

OSI Connect (formerly OSI Hotline) is a one-of-a-kind resource dedicated to supporting those impacted by osteosarcoma. This free resource connects patients, families, and caregivers with knowledgeable osteosarcoma expert physicians to answer questions about all aspects of the disease. OSI Connect physicians can discuss available treatments, possible side effects, and provide helpful advice for getting the most out of your visits with your treating physician.

OSI Connect (anteriormente conocida como la línea de atención de OSI) es el único servicio dedicado completamente en ayudar a las personas afectadas por el osteosarcoma. Este servicio gratuito ayudará a los pacientes, padres y personal médico encontrar respuestas a sus preguntas a través de nuestro grupo de expertos médicos. Allí se podrá encontrar información acerca de todos los aspectos de esta enfermedad, tratamientos disponibles, posibles efectos secundarios y un asesoramiento útil para poder maximizar las visitas con los médicos tratantes.

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OSI Connect Frequently Asked Questions

What is OSI Connect? How can it help?

OSI Connect (formerly OSI Hotline) is a free resource for patients who have been diagnosed with osteosarcoma, or suffered a relapse after initial treatment. These events are devastating and overwhelming, and start a desperate pursuit to gain knowledge and understanding. Often people turn first to the internet but encounter an avalanche of search results with no way to assess their accuracy, quality, or applicability. This resource will help patients, families, and caregivers find answers to their questions from experienced, knowledgeable osteosarcoma expert physicians about all aspects of the disease, including available treatments and possible side effects, as well as helpful advice for getting the most out of your visits with your treating physician. OSI Connect is available in English and Spanish.

How does it work?

A member of the Osteosarcoma Institute staff will answer your form submission via email and, on a confidential basis, gather your information and questions for review by one of the sarcoma experts who serves on our board. After this review, we will arrange a phone call between you and the expert.

OSI Connect provides general guidance about the treatment of osteosarcoma. OSI Connect helps patients, their families and physicians. We can provide referrals for care if you wish. We do not provide medical care or specific medical advice.

OSI Connect is provided free of cost as a service of the Osteosarcoma Institute. Information gathered from you will be treated confidentially by us as described in our Privacy Policy.

 

How does OSI Connect benefit your physician/oncology team?

Osteosarcoma is a rare cancer diagnosis, and often excellent and compassionate physician teams do not include an expert in this disease. Care teams in this situation routinely welcome the input offered by a disease expert like those that are available through OSI Connect. These physicians are uniquely trained and experienced in the management of osteosarcoma, and their consultation may result in additional options or nuance in care to be considered by your physician team as it maintains continuity of direct clinical care.

OSI Connect Testimonial

Colette R.

Mother of Osteosarcoma Patient

OSI Connect is an amazing resource for our family! As a mother with a 13 year old osteowarrior, I couldn’t rest without knowing I am doing absolutely everything to give her the best care. OSI Connect gave me that peace of mind and the reassurance that I’m doing everything possible for my daughter. They are knowledgeable, kind and compassionate. I can’t thank the Osteosarcoma Institute enough for providing this service.

Gavin, osteosarcoma patient, connected to a
trial through OSI Connect

SEARCH FOR

A Clinical Trial

The Osteosarcoma Institute is pleased to connect interested parties with CareBox, a free and confidential trial matching service that will help guide you through a search and referral process to find a clinical trial that may be right for you. This matching system shortens the clinical trial search process from weeks to minutes, helping users identify clinical trials with eligibility criteria that match a patient’s specific diagnosis, stage, symptoms, and treatment history. Fill out your contact information below, and a Clinical Trial Navigator will call you within one business day. Se habla Español.

Funding Partnerships

Here at the Osteosarcoma Institute, we care about progress, not credit. We believe the more people working on the problem, the better. We establish partnerships with like-minded families and foundations wishing to co-fund osteosarcoma research studies and trials with the assistance of our organization.

Lizzy’s Walk of Faith Foundation

Lizzy’s Osteosarcoma Science Fund

In 2020, the Osteosarcoma Institute partnered with Lizzy’s Walk of Faith Foundation to establish Lizzy’s Osteosarcoma Science Fund at the OSI. Together, we have raised more than $75,000 (as of April 2022) in honor of Lizzy. Lizzy’s Fund is being applied towards a breakthrough liquid biopsy study selected by Lizzy’s parents and the founders of LWOF Foundation, Jennifer and John Wampler. This study was selected after the Wamplers met with OSI’s osteosarcoma experts to review proposals from our grant process.

 

#TeamIzzy’s Osteosarcoma Science Fund

In 2021, the Osteosarcoma Institute joined forces with osteosarcoma survivor, Izzy, and her family to start a fund in her name. Together, we have raised more than $250,000 (as of April 2022), which will be applied to a breakthrough clinical trial or study in osteosarcoma this year. Of her experience opening a fund with OSI, Izzy says, “Research and trials are necessary to help kids like me. None of it can happen without money. The more we talk about it, the more people will know and the more they can help.”

 

Rally Foundation & Osteosarcoma Institute

The Rally Foundation for Childhood Cancer Research partnered with the Osteosarcoma Institute to co-fund a Phase II Clinical Trial at MD Anderson Cancer Center. The Rally Foundation is dedicated to empowering volunteers to raise awareness and funds to find better treatments, and ultimately cures, for all pediatric cancers.

 

Advocacy Collaborations

Beautifully Flawed Foundation

 

A retreat designed to unite and inspire young women ages 14-25 who face limb differences or the loss of a limb; to uncover the beauty in every story.

 

Lazarex Cancer Foundation

At Lazarex Cancer Foundation we improve the outcome of cancer care, giving hope, dignity and life to advanced stage cancer patients and the medically underserved by providing assistance with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement. We provide resources for cancer patients who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up.

 

MIB Agents

MIB Agents is a leading pediatric osteosarcoma nonprofit dedicated to Making It Better for our community of patients, caregivers, doctors, and researchers through programs, education, and research. 

 

Osteosarcoma Project

Osteosarcoma Project by Count Me In is stewarded by the Broad Institute of MIT and Harvard, the Dana-Farber Cancer Institute and Emerson Collective. The Osteosarcoma Project has been designed and implemented collaboratively with osteosarcoma patients, advocates, caregivers, loved ones, cancer researchers, and clinicians. The goal of this project is to generate a large dataset that includes genomic, clinical, molecular, and patient reported information that can be shared with the biomedical community in order to accelerate discoveries and better therapies for this disease.

 

The Osteosarcoma Collaborative Logo

The Osteosarcoma Collaborative

The Osteosarcoma Collaborative brings together data, researchers, patients and families to find new cures for osteosarcoma through advocacy, fundraising, education and awareness regarding the disease.

 

The Osteosarcoma Collaborative Logo

The mission of The Power of Will is simple – to support and enhance the lives of sarcoma patients and their loved ones. Established in honor of Will Hudson, The Power of Will is on a steadfast pursuit to change the narrative for sarcoma patients. The Power of Will provides both educational tools and financial support opportunities because they have seen firsthand how overwhelming a sarcoma diagnosis can be.

 

Emily, Osteosarcoma Survivor

Want to share your story with us?

Fill out the form below to tell us about yourself. Sharing stories of osteosarcoma families helps us raise awareness and funds for much-needed research.

Osteosarcoma in Canines

Carl Zilkerbark, Osteosarcoma patient

Click to Read Carl’s Story 

Canine Osteosarcoma Background

The problem of cancer in pet dogs is significant. In the United States approximately 1 million pet dogs will be diagnosed with cancer each year. Cancers that develop in pet dogs share strong similarities with human cancer patients. Tumor initiation and progression are influenced by similar factors in both human and canine cancers, including age, nutrition, sex, reproductive status, and environmental exposures. The spectrum of cancers seen in pet dogs is as diverse as the cancers seen in human patients. Not surprisingly the genetic events that are understood to be associated with cancer development and progression in humans are also the same as those that occur in canine cancers. Furthermore, the conventional treatments that are effective in the treatment of human cancers are for the most part effective in the treatment of pet dogs cancers. The biological complexity of cancers in pet animals is high and emerges from a similar intra-tumoral (cell-to-cell) heterogeneity seen in human cancer patients. A natural consequence of this heterogeneity is the acquisition of resistance to therapy, recurrence of disease, and spread or metastasis to distant sites. In these ways the problem of cancer in pet dogs is identical to the problem of cancer in people.

Helping Patients on Both Sides of the Leash

An opportunity exists to help both pet dogs and people, particularly children with cancer. This opportunity integrates clinical trials that assess new drugs for the benefit of both canine and human cancer patients. The goal of this integrated effort is to speed the development of new cancer treatments by allowing questions to be answered in both the dog and the human rather than the human alone. Indeed, the formal integration of studies that include pet dogs with cancer has recently begun and is becoming a more common part of an innovative cancer drug development process.

Similarities in Canine and Human Osteosarcoma

Of the cancers that occur in both pet dogs and humans, osteosarcoma is perhaps the most similar. Osteosarcoma is the most common primary tumor of bone in both pet dogs and children. Pet dogs develop osteosarcoma at similar sites as pediatric patients, with identical microscopic features, and response to traditional treatment regimens such as surgery and chemotherapy. Most importantly, this cancer is associated with a high risk for spread from the bone to the lungs. An important difference between the species is that there are more than 10,000 new cases of osteosarcoma diagnosed in dogs each year, whereas there are approximately 800 osteosarcoma diagnoses made in people each year. New treatments are needed for this highly aggressive cancer in both species.

Resources

Canine Clinical
Trial Finder

Canine Clinical Trial Resources

Find a Veterinary Oncologist in your area

Frequently Asked Questions

English

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    What is Osteosarcoma?

    Osteosarcoma (OS) is the most common primary bone tumor seen in children/adolescents and young adults, with around 600 cases diagnosed yearly in the United States between the age of 10 and 30, and a peak incidence during the adolescent growth spurt. It can occur anywhere along with the skeleton, but the most common sites are in areas of extensive longitudinal bone growth, around the knee (distal femur and proximal tibia, and shoulder (proximal humerus). The overwhelming majority of OS cases requires both surgery and chemotherapy for curative treatment but about 1/3 of cases will relapse and metastasize. The most common site of metastatic disease in the lung, although metastases to bone also occur.

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    What are the symptoms of OS?

    The most common presenting complaint of patients with OS is pain. The pain is commonly associated with some form of trauma, although there is no association of osteosarcoma with trauma. Since pain is so common among young active children and adolescents as is mild trauma, this presenting sign often is present for weeks to months prior to seeking medical attention, with the pain frequently becoming more persistent and often more severe over time, ultimately leading to medical attention. There may also be associated swelling over the area of pain that may also increase over time. Eventually, imaging of the affected area leads to the diagnosis.

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    What is a Clinical Trial?
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    What is Immunotherapy?
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    Trial Phases
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    Introduction to Advancements in Cancer Treatments
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    What is Chemotherapy?
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    Are Osteosarcoma Tumors Hard?

    Osteosarcoma is considered a solid tumor. Since these tumors usually originate in a bone and form bone like substance, they are often hard and can be calcified.   

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    Can Osteosarcoma Spread?

    The most common site of spread or metastases in osteosarcoma is the lung. But it can also metastasize to other bone sites less commonly than the lung.

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    Can Osteosarcoma Be Misdiagnosed?

    Osteosarcoma can be misdiagnosed, especially if the biopsy sample is small. Standard confirmation of the diagnosis includes examining the tumor under the microscope and seeing the presence of “malignant osteoid”, which is the disordered attempt at bone formation by the malignant cells and can often be difficult to see so small biopsy samples can miss this. The increasing use of molecular characterization can also help but is not definitive by itself, unlike other solid tumors such as Ewing’s sarcoma. 

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    How is Osteosarcoma Diagnosed?

    See “Can osteosarcoma be misdiagnosed” in terms of pathology. Once the diagnosis of OS is confirmed by pathology, standard additional test as part of the staging procedure include a Chest CT scan (to rule out the presence of pulmonary metastases, CT /MRI scans of the primary tumor site (to determine the extent of the tumor and help the surgeon determine the surgical approach to be taken), and bone scans/PET scans to rule out bone metastases.

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    What Does Osteosarcoma Mean?

    Osteosarcoma comes from the Greek words sarc, meaning fleshy substance, and oma, meaning growth. Osteo adds bone like to the word sarcoma.

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    When Was Osteosarcoma First Discovered?

    Osteosarcoma is the oldest tumor identified in humans, identified in a 1.7 million year old human fossil from Africa. It was also identified in the fossil of a 77 million year old dinosaur specimen. It can be identified in fossils because of its origin in bone that is preserved in fossil specimens.

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    Who Does Osteosarcoma Usually Effect?

    The average age at diagnosis is 15 in boys and 13 in girls, corresponding the peak growth spurt in girls and boys. It is slightly more common in boys. It is very rare in children below 5.

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    Why Does Osteosarcoma Spread to the Lungs First?

    Tumor spread to the lung occurs by tumor cells traveling to the lungs through the blood stream. But since our blood always travels to the lung to provide oxygen to our blood, and not all cancers spread to the lungs first, there must be additional reasons that OS is so prone to lung metastases. We believe there is some not clearly defined interaction between lung tissue and OS tumor cells that travel to the lung that allows them to stick in the lung and begin to grow. This is an area of active research.

Español

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    ¿Qué es el Osteosarcoma?

    El osteosarcoma (OS) es el tumor óseo primario más común observado en niños / adolescentes y adultos jóvenes, con alrededor de 600 casos diagnosticados anualmente en los Estados Unidos entre las edades de 10 y 30, y una incidencia máxima durante el período de crecimiento de la adolescencia. Puede ocurrir en cualquier lugar junto con el esqueleto, pero los sitios más comunes se encuentran en áreas de extenso crecimiento óseo longitudinal, alrededor de la rodilla (fémur distal y tibia proximal, y hombro (húmero proximal). La gran mayoría de los casos de SG requieren cirugía y quimioterapia para el tratamiento curativo, pero aproximadamente 1/3 de los casos recaerán y harán metástasis. El sitio más común de enfermedad metastásica en el pulmón, aunque también se producen metástasis en los huesos.

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    ¿Cuáles son los síntomas del OS?

    La queja de presentación más común de los pacientes con SG es el dolor. El dolor se asocia comúnmente con algún tipo de trauma, aunque no existe una asociación de osteosarcoma con trauma. Dado que el dolor es tan común entre los niños y adolescentes activos jóvenes como lo es el traumatismo leve, este signo de presentación a menudo está presente durante semanas o meses antes de buscar atención médica, y el dolor con frecuencia se vuelve más persistente y a menudo más severo con el tiempo, lo que finalmente conduce a problemas médicos. atención. También puede haber inflamación asociada sobre el área del dolor que también puede aumentar con el tiempo. Finalmente, la obtención de imágenes del área afectada conduce a la diagnóstico.

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    ¿Qué son los Ensayos Clinicos?
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    ¿Qué es la Inmunoterapia?
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    Fases de Prueba
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    Introducción
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    ¿Qué es la Quimioterapia?

Reading Recommendations

from the Director’s Desk

Each quarter the Osteosarcoma Institute Director, Dr. Lee Helman, shares a reputable reading reccomendation to guide our supporters through learnings, breakthroughs, and updates in osteosarcoma and childhood cancer.

Targeting the VEGF Pathway in Osteosarcoma

Researchers discuss the pathophysiology, rationale, and role of targeting angiogenesis via the VEGF pathway in patients with osteosarcoma with emphasis on the published clinical trials and future directions.
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