Specific treatment for a gliomatosis cerebri may include:
Biopsy / Surgery - The first procedure, if the tumor is accessible is surgery. If surgery not an option, a biopsy may be recommended to confirm a diagnosis and grade the tumor. Surgery is rarely considered a treatment as the tumor is frequently widespread.
Radiation therapy - The primary therapy for newly diagnosed gliomatosis cerebri, radiation therapy uses high-energy rays (radiation) from a specialized machine to damage or kill cancer cells and shrink tumors.? Chemotherapy may be chosen as the first line of treatment for a young child to delay the risks of radiation to a young child.
Chemotherapy - Experimental chemotherapy delivered along with radiation therapy is actively being investigated as a treatment of gliomatosis cerebri. Temodar is frequently given as the standard chemotherapy during radiation and following radiation treatment.
Biological Agents - Biological agents such as Bevacizumab ( Avastin ) is sometimes used as a treatment either during or following radiation. It may be given along with another chemotherapy agent or on its own. Avastin focuses on interfering with the blood supply to the tumor.
Clinical Trials - Several trials evaluating new agents may be available for high grade gliomas. These are trials involving new drugs and trials evaluating whether new ways of delivering the traditional drugs might improve responses. Current trials can be researched at www.clinicaltrials.gov
The concept of personalized medicine is to look at each brain tumor individually. Instead of grouping all of one type brain tumor together and treating them all the same, it looks at each tumor individually, identifying the specific mutations of that tumor, and determines a treatment based on the specific mutations, not by the type of tumor.
This concept is explained well in the following video by Dr Mark Kieran
Video - Dr Mark Kieran "Multi-disciplinary Approaches to Treating Pediatric Brain Tumors"
The following video link is to an hour long video which was recorded through the American Brain Tumor Association, and is available on their website and also on You Tube. It is not specific to Gliomatosis Cerebri, but It goes through a very clear description of the concept of personalized medicine and focus on mutations in brain tumors, and recent advances in treatment of brain cancers. When you have the time, I highly recommend it
Where to get treatment for Pediatric Gliomatosis Cerebri
As with all pediatric cancers, care should be delivered at specialized centers where multidisciplinary teams can provide not only expert diagnostics and experienced medical, surgical and radiation oncologists, but also psychosocial support, neuro-psychological testing and specialized school plans, all delivered in a child- and family-sensitive and friendly environment.
Our personal experience was at Dana-Farber Cancer Institute / Children's Hospital Boston. We received the very best medical care available from a complete team of brilliant and caring professionals and highly recommend this facility. We had the availability of multiple treatment options, access to the most recent research options and support for our medical, social, emotional, and financial needs.
Other hospitals with research interest and experience treating Gliomatosis Cerebri include:
" Weill Cornell Medical Center, NewYork-Presbyterian Hospital
" National Children's Medical Center, Washington DC
" Lucille Packard Children's Hospital at Stamford, CA
US News and World Reports rates the TOP 10 US Pediatric Cancer Centers for 2013-2014 http://health.usnews.com/best-hospitals/pediatric-rankings
For the 2013-14 rankings, U.S. News surveyed 179 pediatric centers to obtain clinical data in 10 specialties and asked 150 pediatric specialists in each specialty where they would send the sickest children.
These 10 hospitals received the highest ratings ( not rated specifically for brain cancers)
1. Cincinnati Children's Hospital Medical Center
2. Dana-Farber Boston Children's Hospital
3. Children's Hospital of Philadelphia
4. Children's Hospital of Los Angeles
Los Angeles CA
5. St Jude Children's Research Hospital
6. Seattle Children's Hospital
7. Texas Children's Hospital
8. Anna and Robert H. Lurie Children's Hospital
9. Children's Hospital Colorado
10. Memorial Sloan-Kettering Cancer Center
New York, NY
What to look for in a Hospital / Treatment Center:
Pediatric NeuroOncologists - Not all hospitals have Pediatric Oncologist who specialize in Brain Tumors. You want to be treated by a Pediatric NeuroOncologist. They specialize in treating brain tumors and therefore have a greater opportunity to have more experience and the ability to stay more current with research and treatment options.
Support services / programs for children and / or teens - the social and support aspects of treatment are very important in addition to the clinical treatment you / your child will receive. It is important for many to be able to meet others and have a support network. Most major cancer treatment centers will have age appropriate support programs, as well as psychologists and psychiatrists to support the emotional burdens of this difficult disease.
Availability of Clinical Trials - not all patients will respond to the standard treatments of radiation and traditional chemotherapy. You want to be in a treatment center which offers you the option of Clinical Trials of new treatment options that are not yet approved by the FDA. You may decide not to opt in to a Clinical Trial, but these are the facilities which make these options available to you.
Hospital's participation in one or more national programs of collaborative research such as:
The Children's Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the world's largest organization devoted exclusively to childhood and adolescent cancer research.
Pediatric Brain Tumor Consortium, a group of 11 institutions in the United States investigating novel approaches to the treatment of this and many other types of brain tumors.
Pediatric Oncology Therapeutic Experimental Investigators Consortium (POETIC), a collaborative clinical research group offering experimental therapies to patients with relapsed or refractory disease.
Availability of MRI machines in the OR - this is not available in many hospitals yet, but is becoming more available. Having an MRI in the Operating Room allows the Neurosurgeon the ability to check the location of a tumor, plan the best approach to a tumor in a difficult location, as well as in a non-infiltrative tumor, being able to check that the tumor is fully removed.
Many specialized brain tumor treatment centers have now added experts in complementary or alternative medicine (CAM). These treatments, including acupuncture/acupressure, therapeutic touch, massage, herbs and dietary recommendations, can also help to control pain and side effects of therapy. Talk to your child's physician about whether CAM might be a viable option of treatment.
You may also find the services of Physical Therapists, Occupational Therapists, Speech Therapists ( for swallowing issues ) and . Music and Art Therapists are also available through many Visiting Nurse Associations, Palliative Care Programs and InPatient Programs.