It is very important to understand and believe that whatever choice the family feels is best for them IS the right choice for that family. No two families experience DIPG/DMG in the same way, so there is no expectation that families should make the same choices regarding navigation of the disease.
As much hope as there is with promising clinical trials, the only proven standard of care for DIPG/DMG is radiation. There ARE long-term survivors of DIPG, though they represent less than 2% of diagnosed patients. A family is justified in choosing to decline treatment and simply focus on quality of life or in choosing to try every clinical trial available to them.
The only approved standard of care for DIPG/DMG is radiation therapy. Radiation should begin as soon as possible after diagnosis in order to stall the progression of the tumor.
Clinical trials are the primary way researchers determine if a new treatment is safe and effective in people. There are currently multiple clinical trials available for DIPG/DMG patients that are showing promise.
Although chemotherapy has proven beneficial in fighting many types of cancers, there are specific challenges with DIPG/DMG that have inhibited this type of treatment from having the same success. In recent years, there have been developments showing promise in allowing chemotherapy to aid in DIPG/DMG treatment.
The blood-brain barrier poses a significant obstacle to treatment because it prevents toxins and other molecules in the bloodstream from entering brain cells. Newer delivery methods are being developed to disrupt the blood-brain barrier to allow more chemotherapy agents to pass. Studies are currently being conducted to investigate these new methods that deliver medication directly into the tumor.
Immunotherapy is a treatment that uses the body’s own immune system to fight cancer cells. Clinical trials using immunotherapy to treat DIPG/DMG patients are underway and showing promise.
Compassionate Use/Expanded Access
In searching for a clinical trial, there may be instances in which a patient will not be allowed to enroll due to an inclusion/exclusion requirement. If this happens, there may be other options to explore that might enable access to the treatment.
Complementary & Alternative Medicines
Complementary and alternative medicines (CAMs) are the use of medications or other products that are not considered standard of care. CAMs may be considered for cancer patients to help decrease cancer treatment side effects, but should be discussed with your medical team.