This definitive guide to best practices and treatment options for DIPG / DMG was developed by Sabine Mueller, MD, PhD, with input from leading pediatric neuro-oncologists who specialize in DIPG / DMG tumors.
Each topic here links to further information on My DIPG Navigator, our one-on-one support program for families battling DIPG / DMG.
A biopsy is a sample of tissue removed from the body for testing.
A biopsy is a crucial step in establishing a patient’s specific diagnosis. Understanding a tumor’s biological makeup and the key gene mutations that control the tumor cells’ growth can inform the best choice among possible treatment options. Biopsies are often a requirement for enrollment in a clinical trial.
An urgent first step in treating DIPG/DMG is for radiation to start relatively quickly. Radiation is the standard of care that has been used for many years and can generally be performed at most hospitals safely.
Radiation helps to preserve as much function as possible and can result in a “honeymoon period” — a time when the side effects or symptoms being experienced are alleviated temporarily.
Steroids may or may not be prescribed for DIPG/DMG after first being diagnosed. Steroids do not inhibit the tumor from growing, but they may help alleviate symptoms caused by inflammation surrounding the tumor.
In some cases, steroid use may negatively impact the effectiveness of some types of current or future treatments. Work with your medical team to learn the pros and cons of steroid use.
One way that patients themselves can contribute to the search for a cure is to share their blood, saliva, cerebral spinal fluid, cystic fluid, or tumor tissue samples for research.
Sharing data and samples is a highly personal decision to be made by each family. Patient information and biospecimen samples are precious resources.
Consenting to share personal material allows researchers to: study how tumors behave, investigate how they can be prevented from forming, and explore potential treatments when they do form.
Managing the necessary care for DIPG/DMG can often cause a financial strain on a family. Private health insurance often will not cover all medical costs, but there are secondary insurance options that may cover more (e.g. Medicaid). There are also various other sources of financial relief that we can help families access.
Clinical trials are the primary way researchers determine if a new treatment is safe and effective in people. Additionally, they determine whether the treatment is more effective and/or has less harmful side effects than the current “standard of care” treatments. Currently, the only standard treatment for DIPG/DMG is radiation.
Clinical trial availability varies, and not all trials are available in all geographical locations. There are also inclusion and exclusion criteria that must be met before a patient can enroll into a clinical trial.
A DIPG/DMG diagnosis comes with difficult treatment decisions that need to be made quickly. Getting a second, or sometimes third, opinion from a medical center that specializes in DIPG/DMG tumors is usually recommended.
Medical professionals who specialize in DIPG/DMG will offer guidance on tumor biopsy options, information on upcoming clinical trials, and appropriate progression care.
Enrolling in palliative care services does NOT mean giving up. Palliative care is not synonymous with hospice care.
Pediatric palliative care is a key support system to help deal with the obstacles that inevitably arise when navigating a serious illness like DIPG/DMG. It can help minimize a child’s pain or discomfort. It can provide social and emotional support for the entire family.
ChadTough Defeat DIPG Foundation is a 501(c)(3) nonprofit organization.
P.O. Box 907, Saline, MI 48176 | (734) 707-8732
Federal Tax ID: 47-4041494
© 2024 ChadTough Defeat DIPG Foundation | Privacy Policy
