Our GBM Story: Margaret & Glen
I am a caregiver for my husband Glenn von Nostitz, who was diagnosed with wild-type and MGMT negative GBM in January 2016. Glenn had a long career in New York State and City government that unfortunately coincided with 9/11. His tumor is believed to have been triggered by the toxic air in Lower Manhattan following the attack on the World Trade Center.
Glenn’s treatment has been varied and continuous. Because his tumor is unmethylated, he was initially advised that TMZ treatment would be futile and instead began a Phase 1 clinical trial of an experimental immunotherapy drug. Seven months later, he was diagnosed with regrowth and had a second resection. After he healed, Glenn began using Optune, a device that delivers low intensity, alternating electric fields that inhibit cancer cell mitosis and Keytruda, an immunotherapy. His tumor was kept in check for 11 months until October 2017, when it doubled in size and was inoperable.
The struggle is not over yet, but it looks like Optune treatment will soon be available to seniors with recurrent GBM.
Since then, Glenn has gone through two more cycles of new treatments followed by stable tumors and new growth. In total, he has treated with two different immunotherapies and three different chemotherapies, in addition to off-label drugs that are believed to enhance the action of the chemotherapy and Optune.
Optune has been the one near-constant — he has logged more than three years and five months with this device. However, despite its obvious effectiveness, treatment coverage has been an enormous challenge. It took multiple appeals to secure coverage by Blue Cross/Blue Shield. Almost immediately after that victory, Glenn turned 65 and we were back to square one.
We became active advocates for Medicare coverage of Optune. In April 2019, we submitted testimony to a closed meeting of the Center for Medicare Services (CMS) convened to discuss coverage guidelines. In June, after publication of a set of draft guidelines so restrictive that no one over 65 would qualify, we traveled to Baltimore to testify at the public hearing.
Some of our critiques resulted in positive amendments, but they only apply to newly diagnosed patients. GBM patients like Glenn, who begin Optune treatment after their tumors recur, are still not covered by Medicare. So we continue the fight for coverage in the courts. The lawyer representing us recently reported a positive judicial decision. The struggle is not over yet, but it looks like Optune treatment will soon be available to seniors with recurrent GBM.
Margaret has been involved with OurBrainBank since its founding as an advisory committee member and Glenn uses the app to record his symptoms.
Update: Sadly Glenn died in 2021.