To help get you started in figuring out some of the most important first steps of your journey, Sabine Mueller, MD, PhD, with input from additional pediatric neuro-oncologists who specialize in DIPG/DMG, suggests the following for your consideration:
Best Practices To Know Upon DIPG/DMG Diagnosis
Biopsy should be performed by someone who has experience with the procedure. If a patient is critically ill and needs to start radiation therapy quickly, a biopsy can also be performed after completion of radiation therapy. Biopsies are necessary to determine the specific DIPG subtype.
Having tissue available is becoming more important as many clinical trials require information or actual tissue from the biopsy prior to enrollment. The tissue may need to be sent to an outside laboratory for additional testing. Be sure the tissue is used for any relevant testing — often the tissue is fairly limited. Data generated from the tissue can easily be shared with others. Learn More
The most important first step is for radiation to start relatively quickly. For some children with fewer symptoms, this level of urgency might be less critical. 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. Proton and photon radiation have both been used for DIPG/DMG.
There is no documented survival difference between proton or photon radiation for DIPG/DMG, so whatever can be offered sooner should be considered. There might be specific considerations for each child that should be discussed in detail with a radiation oncologist trained to see children with brain tumors.
If considering a clinical trial, please note that some clinical trials start with radiation, while other trials start after radiation. Learn More
Steroids may or may not be prescribed for DIPG/DMG after first being diagnosed. When and how much to use depends heavily on the clinical presentation and should be discussed with your team. Steroids do not inhibit the tumor from growing, but they help alleviate symptoms caused by inflammation surrounding the tumor.
There should be a plan for steroid use to be decreased or weaned as quickly and safely as clinically possible. 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.
Alternatively, Bevacizumab, also known as Avastin, might be considered an alternative to steroids if deemed safe by your oncology team. Learn More
Not every hospital has extensive experience in treating patients with DIPG/DMG; therefore, it is often beneficial to obtain a second opinion.
A second opinion can confirm the initial plan or may expand your knowledge about other treatment options. Please note that DIPG/DMG expertise and treatment options can vary between different medical centers. Learn More
Clinical trial options should be discussed with your medical team. Clinical trial availability varies, and not all trials are available in all geographic locations.
There are inclusion and exclusion criteria that must be met before a patient will be able to enroll into a clinical trial. All trials are listed on clinicaltrials.gov. Your Nurse Navigator can help you explore and understand your options. Learn More
If your insurance is not covering all your needs, talk to your social worker about secondary insurance options (i.e., Medicaid). Learn More
Data sharing for a disease like DIPG/DMG is critical because more progress will be made working together as a team. An example of this is the DMG ACT. This group combines researchers around the globe to develop the best next therapies for children with DIPG and to make data available as soon as possible.
Consenting to share data with the Children’s Brain Tumor Network (CBTN) allows researchers to learn from DIPG patients to advance treatments. A family willing to share data collected throughout their journey can make a significant difference in this disease.
If interested, ask your medical team or nurse navigator about options. Learn More
Palliative care is a helpful resource to utilize throughout your child’s journey. In some states, it might be presented as pediatric hospice care.
Palliative care does NOT mean you have given up or that you can no longer seek treatments. Pediatric palliative care can be started WHILE on therapy and plays a different role than classic “hospice” end-of-life care in adults. This is especially helpful right after diagnosis and will help to coordinate care and provide emotional support. Learn More