Patient Resources
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 lรญnea de atenciรณn de OSI) es el รบnico servicio dedicado completamente en ayudar a las personas afectadas por el osteosarcoma. Este servicio gratuito ayudarรก a los pacientes, padres y personal mรฉdico encontrar respuestas a sus preguntas a travรฉs de nuestro grupo de expertos mรฉdicos. Allรญ se podrรก encontrar informaciรณn acerca de todos los aspectos de esta enfermedad, tratamientos disponibles, posibles efectos secundarios y un asesoramiento รบtil para poder maximizar las visitas con los mรฉdicos tratantes.
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 couldnโt 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 Iโm doing everything possible for my daughter. They are knowledgeable, kind and compassionate. I canโt 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 patientโs 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 Espaรฑol.
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 the 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 the 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
The Beautifully Flawed Retreat was 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. It includes expert advice, instruction and practical health and wellness tips that specifically focus on limb differences from onsite doctors, trainers and nutrition specialists.
Osteosarcoma Now was developed with the sole purpose of supporting osteosarcoma patients and their families throughout their cancer journey, wherever they live in the world. Their curated clinical trial database gives patients the tools and information to explore new treatment options and make decisions that are right for them. Each trial has been summarised in accessible language to give a clear picture of its aims, what it involves and who to contact about the trial.
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 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. OsteoBites is a weekly webinar and podcast where Osteosarcoma Experts share their research, hope, and innovation.
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 brings together data, researchers, patients and families to find new cures for osteosarcoma through advocacy, fundraising, education and awareness regarding the disease. They manage the Osteosarcoma Information Facebook page which was created for discussions focused on osteosarcoma treatment, clinical trials, and scientific research.
The mission of The Power of Will is simple โ 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. They provide 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
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
- What is osteosarcoma?
Osteosarcoma is a type of bone cancer that originates in cells of the bone. The word โosteosarcomaโ comes from the Greek words sarc, meaning fleshy substance, and oma, meaning growth. Osteo adds bone-like to the word sarcoma. It can occur anywhere along the skeleton, but the most common sites are in longer bones, for instance around the knee (distal femur and proximal tibia) and shoulder (proximal humerus).
- How common is osteosarcoma?
Osteosarcoma is rare โ only around 1,000 people are diagnosed in the United States each year. Osteosarcoma most commonly occurs in children, teenagers and young adults between the ages of 10 and 30. It is slightly more common in boys and young men. There is a peak incidence of osteosarcoma during the adolescent growth spurt. It is very rare in children under 5 years old.
- What causes osteosarcoma?
The exact cause is still unknown. Osteosarcoma develops when healthy cells responsible for making new bone experience changes in their DNA. These DNA changes tell the cells to make abnormal bone. This results in a tumor that invades and destroys surrounding healthy bone and surrounding tissue.
- Can osteosarcoma be prevented?
It cannot be prevented. However, there are certain risk factors to be aware of. Osteosarcoma risk factors include:
โ Bone disorders (Pagetโs disease and fibrous dysplasia)
โ Exposure to radiation (for example, previous cancer treatment)
โ Rare, inherited disorders (hereditary retinoblastoma, Bloom syndrome, Li-Fraumeni syndrome, Rothmund-Thomson syndrome and Werner syndrome) - What are the symptoms?
People with osteosarcoma may have a variety of symptoms, including:
โ Pain in and around a bone that becomes persistent and severe over time
โ Swelling near a bone
โ Limping and/or inability to lift or use a limb
โ Bone injury/fracture from minor trauma
If you or your child is experiencing any of the above symptoms, contact your doctor. - How is osteosarcoma diagnosed?
The diagnosis of osteosarcoma can only be definitively made with a biopsy of the affected area. Thanks to advanced imaging technology, doctors can see โ with precision โ where the abnormality is located in the body and help guide the biopsy. Once a biopsy confirms the diagnosis of osteosarcoma, a variety of other tests may be ordered to further determine the extent of the tumor. These may include:
โ X-Ray
โ Computed tomography (CT) scan
โ Magnetic resonance imaging (MRI)
โ Positron emission tomography (PET) scan
โ Additional blood tests
- Can osteosarcoma spread?
Yes, osteosarcoma can metastasize, or spread, to other areas of the body, most commonly to the lungs. Osteosarcoma that spreads to the lungs happens when tumor cells travel to the lungs through the bloodstream. But since our blood always travels to the lungs to provide oxygen to our blood (and not all cancers spread to the lungs first), there must be additional reasons that osteosarcoma is so prone to lung metastases. This is an area of active research.
- What are the treatment options for osteosarcoma?
Current therapy for osteosarcoma almost always includes the combination of a standard chemotherapy treatment and surgery. Most commonly, chemotherapy is given for several months before surgery and is continued after the patient has recovered from their surgery. The type of surgery performed can vary, but usually includes limb-preservation surgery. Following recovery from surgery, patients begin physical rehabilitation as part of their recovery process.
- What should I know about clinical trials?
Clinical trials are available, if and when a patient recurs, following standard treatment. These trials provide patients access to novel treatment methods and drug therapies that are being developed to treat osteosarcoma. Depending on your individual case, you may be eligible to participate in one. The Osteosarcoma Institute is pleased to connect you with a free and confidential clinical trial matching service. Most clinical trials for osteosarcoma include newer โtargeted therapy drugโ or combinations with immunotherapy.
- What are treatment side effects?
With any cancer treatment, there are side effects. This is also true for osteosarcoma treatment. Surgery often involves use of an internal prosthesis and rarely an external prosthesis. Physical therapy will be provided as you heal to help guide rehabilitation and ensure strength and movement are regained in the safest way possible. Chemotherapy side effects can include hair loss, nausea, fatigue, weakness, loss of appetite and weight loss. These side effects will resolve when chemotherapy is completed.
- What is the outlook for people with osteosarcoma?
The outlook depends on many factors, including the location and size of the tumor, whether the cancer has spread and the personโs age and overall health. For more information on osteosarcoma survival rates, click here.
- Why is more research needed?
There have been no improvements in survival of osteosarcoma patients for more than 30 years. Osteosarcoma is complex, and more research is needed. For a brief history of osteosarcoma treatment, click here. Areas of research include gene therapy, targeted drug therapy and immunotherapy.
Espaรฑol
- ยฟQuรฉ es el Osteosarcoma?
El osteosarcoma (OS) es el tumor รณseo primario mรกs comรบn observado en niรฑos / adolescentes y adultos jรณvenes, con alrededor de 600 casos diagnosticados anualmente en los Estados Unidos entre las edades de 10 y 30, y una incidencia mรกxima durante el perรญodo de crecimiento de la adolescencia. Puede ocurrir en cualquier lugar junto con el esqueleto, pero los sitios mรกs comunes se encuentran en รกreas de extenso crecimiento รณseo longitudinal, alrededor de la rodilla (fรฉmur distal y tibia proximal, y hombro (hรบmero proximal). La gran mayorรญa de los casos de SG requieren cirugรญa y quimioterapia para el tratamiento curativo, pero aproximadamente 1/3 de los casos recaerรกn y harรกn metรกstasis. El sitio mรกs comรบn de enfermedad metastรกsica en el pulmรณn, aunque tambiรฉn se producen metรกstasis en los huesos.
- ยฟCuรกles son los sรญntomas del OS?
La queja de presentaciรณn mรกs comรบn de los pacientes con SG es el dolor. El dolor se asocia comรบnmente con algรบn tipo de trauma, aunque no existe una asociaciรณn de osteosarcoma con trauma. Dado que el dolor es tan comรบn entre los niรฑos y adolescentes activos jรณvenes como lo es el traumatismo leve, este signo de presentaciรณn a menudo estรก presente durante semanas o meses antes de buscar atenciรณn mรฉdica, y el dolor con frecuencia se vuelve mรกs persistente y a menudo mรกs severo con el tiempo, lo que finalmente conduce a problemas mรฉdicos. atenciรณn. Tambiรฉn puede haber inflamaciรณn asociada sobre el รกrea del dolor que tambiรฉn puede aumentar con el tiempo. Finalmente, la obtenciรณn de imรกgenes del รกrea afectada conduce a la diagnรณstico.
- ยฟQuรฉ son los Ensayos Clinicos?
- ยฟQuรฉ es la Inmunoterapia?
- Fases de Prueba
- Introducciรณn
- ยฟQuรฉ 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.
Current approaches to management of bone sarcoma in adolescent and young adult patients
Advancing therapy for osteosarcoma
Doctors diagnose advanced cancerโin a dinosaur
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