We don't know enough about Osteosarcoma!
Team Arnav Foundation was established by Arnav's brother Dhruv Krishna with support from his family and friends. Team Arnav's primary goal is to create awareness and raise money to eradicate Pediatric Osteosarcoma.
What is Osteosarcoma?
Osteosarcoma is the most common type of bone cancer. It occurs primarily in children and young adults. However, it can occur at any age.
In children and young adults, osteosarcoma usually starts in areas where the bone is growing quickly, such as near the ends of the leg or arm bones. Osteosarcoma mostly develops around the knee, either in the femur or the tibia. It can also develop in the upper arm close to the shoulder. In adults, Osteosarcoma can develop in any bone, including the bones of the pelvis (hips), shoulder, and jaw.
Osteosarcoma is divided into two stages - Localized or Metastatic. Localized osteosarcoma is only in the bone it started in and the tissues close to the bone. Metastatic osteosarcoma spreads to other parts of the body. It typically starts with the lungs, but can also spread to other bones, the brain, or other organs.
Arnav’s Osteosarcoma was in his tibia close to the knee. At the time of diagnosis, his tumor was presumed to be localized. However, it was later deduced that his tumor may have metastasized early on. This is one of the challenges faced by Osteosarcoma patients. It is tough to tell at diagnosis, with complete certainty, if the cancer is local or metastatic.
The standard treatment all over the US is the same. It starts with a chemotherapy regimen called MAP for ten weeks. It is a concoction of three different chemotherapies. After chemotherapy, you go through surgery in which is when the tumor is removed. Surgery can mean either amputation or Limb Salvage Surgery (LSS). After surgery, the OS warrior goes through another 20 weeks of chemotherapy. The tumor taken out during surgery is sent to the lab for testing where you find a percentage of necrosis (% of dead tumor cells). One of the downsides of this chemotherapy is the lifelong issues it creates like hearing loss, and organ issues for the survivors.
Arnav went through this treatment. He had limb salvage surgery to save his leg; this surgery reduced his mobility. My active 14-year-old son (who at the time was a nationally recognized track cyclist), was not allowed to run or jump again in his lifetime. His necrosis was close to 40% which was not a good number. This meant that the chemotherapy was not killing the cancer cells in his body effectively. However, the standard treatment is to continue this chemotherapy as there are no other known options. Arnav had severe hearing loss from the chemotherapy.
For those who fight osteosarcoma, the chances of being “event-free” for 5 years is 55%, and the overall chance for survival is 70%. This can further be broken down for those with a localized tumor at 60% (5-year event-free) and 76% (survival) and those with metastatic tumor at 28% and 45%.
The key questions facing researchers (apart from treatment of the disease, easing the physical toll of the side effects, and safe-guarding the Osteo warrior from the mental trauma) are:
Why can’t this cancer be staged correctly at diagnosis so that it can be treated appropriately?
How do we figure out ahead of giving chemotherapy if it will be effective for a particular Osteosarcoma patient?
What are the other options for Osteosarcoma treatment?
Are the event-free and overall survival statistics acceptable for children and teenage kids?
The most important question of all is how can we help?
We can help by raising funds for research that can answer these questions and whatever new ones arise as we progress. We can help by learning from our experience and fighting for research dollars so that other parents do not have to tell you stories like ours.