What is DIPG (Diffuse Intrinsic Pontine Glioma)?

 

DIPG, is a glioma tumor located in the pons (middle) of the brain stem. The brain stem controls breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat. These tumors (DIPG or brainstem gliomas) make up 10% to 20% of all pediatric brain tumors. There is a 0% survival rate and a life expectancy of about 9 months. There is no known cure for this disease. DIPG is arguably the deadliest form of childhood cancer. The current standard of care for DIPG is radiation in which has an 83% chance of giving your child a “honeymoon phase” and you are instructed to go make memories. Only 4% of federal government cancer research funding goes to study pediatric cancer. In the last 40 years, the only progress that has been made is a minimal increase in quality of life for kids diagnosed with DIPG.

“There is 0% survival rate and a life expectancy of about 9 months.”

Symptoms of DIPG

  • Facial numbness and weakness (usually one side)
  • Headaches, nausea, and vomiting
  • Problems with balance and walking
  • Problems with eyes (numbness, uncontrolled eye movement and double vision)
  • Decreased gag reflex
  • Problems with chewing and swallowing

How is DIPG Treated?

  • Radiation therapy — currently, is the primary therapy for newly diagnosed DIPG in children older than 3. It uses high-energy X-rays from a specialized machine or other types of radiation to kill cancer cells and shrink tumors (stop them from growing). Radiation provides a temporary response in most patients but does not provide a cure.
  • Chemotherapy — is being used along with radiation therapy and other biologic agents in multiple trials to decide if we can find ways to improve the survival rates of patients with DIPG.
  • Surgery — is rarely used to diagnose DIPG because of the risks involved in surgery in this area of the brain. There are cases where a biopsy can be obtained safely, but the use of surgery to remove the tumor is very rare.
    • A biopsy (removal of affected tissue to be examined) may be done to decide the tumor’s type and grade.
    • If the biopsy finds cancer cells and the patient is still in surgery, the surgeon may take out as much tumor as can be removed safely. Depending on where the tumor is located, this might not be an option.

To learn more about DIPG and how you can help support the fight against this deadly disease, please visit www.stjude.org