Activity

URGENT! This post has crucial info for anyone newly diagnosed with GBM! This is the result of the treatment consult arranged for a patient in June 2017, and it talks about what tests to have done which will guide what treatments will be effective or not and list GBM experts on the west coast of the US.

I’m sorry to hear of your recent GBM diagnosis. Can I confirm
that you are not eligible for surgical resection? And has your sample been tested for MGMT promoter methylation? The MGMT status guides how and when to have the chemo temozolomide (frequently called TMZ).

While the standard treatment is radiation and chemo, which you mention is the plan, there may also be clinical trials to consider – however the majority of trials are for after this first line of radiation / chemo treatment. I would recommend using the biopsy sample for broad genomic testing using a test like Foundation One, if that is possible. These tests may identify specific mutations or genetic alterations that make you eligible for clinical trials now or in the future.

I did a search based on your location, and found one trial you may be eligible for now – this tests whether a specific type of targeted radiation would work better at killing the tumor cells:

https://clinicaltrials.gov/ct2/show/NCT02179086 (has sites in Eugene, Portland, and Gresham)

Once you finish the radiation and chemo, if the tumor does not respond or does progress, you may be eligible for the following trials (these require at least one line of radiation / chemo therapy to be completed first) – all are located in Portland:

https://clinicaltrials.gov/ct2/show/NCT02335918: Immunotherapy trial that combines a anti-PD1 (nivolumab) with an anti-CD27 (varlilumab), with the goal of boosting the immune system’s ability to fight the tumor. This combination has shown promising safety and hints of activity in early trials, including with GBM patients

https://clinicaltrials.gov/ct2/show/NCT02709889: If the tumor is positive for DLL3 (the investigators would test the biopsy sample for you), you may be eligible for this trial testing an anti-DLL3 called Rovalpituzumab Tesirine or Rova-T, a drug that has shown some promising effect in lung cancer, but has not yet been tested in GBM

https://clinicaltrials.gov/ct2/show/NCT01967758: Vaccine-based immunotherapy trial examining whether ADU-623 may trigger an immune response (therapy is quite new – this trial is the first test in humans)

Regarding immunotherapies and TKIs in particular, most trials are focused on recurrent or metastatic GBM, and unfortunately I don’t see any early stage trials in your location. If you are able to travel outside of Oregon for treatment, please let me know and I can expand my search accordingly. For example, Seattle and the Bay Area may have additional trial options to consider.

May I also suggest you reach out to one of GBM experts listed below to confirm the treatment plan / get a second opinion:

Edward Neuwelt (OHSU, Portland) http://www.ohsu.edu/people/edward-a-neuwelt/15BCD1001CD2434AAA694289587F3EE9

Maciej M. Mrugala (University of Washington, Seattle) http://depts.washington.edu/givemed/prof-chair/holders/maciej-m-mrugala-m-d-ph-d-mph/

Charles Cobb (Swedish Seattle) http://www.swedish.org/physicians/c/cobbs-charles-s

Mitch Berger (UCSF) http://neurosurgery.ucsf.edu/index.php/about_us_faculty_berger.html

Michael Prados (UCSF) https://www.ucsfhealth.org/michael.prados

Nicholas Butowski (UCSF) https://www.ucsfhealth.org/michael.prados

Susan Chang (UCSF) https://www.ucsfhealth.org/susan.chang