- S
- J
November 15, 2019 was the day it all came crashing down for my brother Brian.
He awoke early morning at 4 AM because of a seizure that started in his leg and promptly generalized to involve his arm, face and ultimately rendered him unconscious and caused him to temporarily stop breathing. He was rushed to hospital where he was diagnosed with a brain tumor. A biopsy of the tumor revealed that he had glioblastoma or stage 4 brain cancer.
Because of its location on his motor strip, Brian’s tumor was deemed inoperable, as surgery would leave him paralyzed. Furthermore, the genetic makeup of Brian’s tumor (IDH wildtype and MGMT unmethylated) made it less likely to respond to chemotherapy. All these factors rendered a terrible prognosis even worse in Brian’s case.
Prior to the diagnosis, Brian’s life was as close to perfect as it gets. He had moved to Canada and he was finally starting his life with his wife Roxy after years of having a long-distance relationship. He was otherwise healthy and active. In fact, 3 weeks prior to the diagnosis Brian and Roxy had completed a half-marathon. This diagnosis changed their lives forever.
If you know Brian, you know that he is strong-willed, determined, optimistic and a genuinely nice and kind person who has so many plans for the future.
Brian bravely fought the odds and he completed standard of care treatment (without resection as the tumor was inoperable) consisting of chemotherapy and daily radiation for 6 weeks followed by additional chemotherapy for 7 months. After 3 clean scans, his tumor progressed with a vengeance with multiple lesions that appeared practically overnight.
You can learn more about Brian’s journey on his website:
https://chisroxy.wixsite.com/brianbattlesgbm
The bravest, most positive and optimistic person I know, Brian is determined to beat this disease. In January 2021, he enrolled in a clinical trial in Toronto and received treatment with experimental immunotherapy, but unfortunately this was not effective. In February 2021, Brian received the devastating news that he had further progression of his disease and was removed from the clinical trial.
He experienced severe brain swelling, lost all function of his right side and his memory temporarily and required hospitalization. Thankfully, the swelling is currently kept in check with steroids, Brian’s mobility is much improved and he has recovered his memory. He is also on last line chemotherapy. But this is not a long-term solution.
There are no more therapy options for Brian in Canada and because of the nature of his multifocal disease and steroids use, he is not a candidate for clinical trials in the US.
Serendipitously, he came across a personalized gene-based vaccine treatment readily available in Germany. This treatment uses a patient's specific tumor mutations to create a vaccine which triggers his or her own immune system to kill cancer cells (these can normally evade detection by the immune system).
Similar treatments are available in the United States and they have shown promise, but only as part of clinical trials. Unfortunately, Brian’s current condition and medications would preclude him from enrolling in any of these trials.
The treatment in Germany has seen very high response rates in patients with advanced cancers, many of whom are in remission or cancer free years after treatment. Specifically, a few patients had multifocal GBM (like Brian’s) and they have seen their tumors disappear.
So Brian and Roxy are choosing to pursue this hopeful avenue.
This will however entail monthly trips for two (as Brian requires some assistance with his mobility) to Germany over the course of two years and the treatment itself is an expensive option requiring upfront payment of a grand total of $60,000 USD.
A donation of any amount will help them fight this monster of a disease and give them a chance at growing old together.
Thank you for keeping Brian in your thoughts and prayers!
Andrea
He awoke early morning at 4 AM because of a seizure that started in his leg and promptly generalized to involve his arm, face and ultimately rendered him unconscious and caused him to temporarily stop breathing. He was rushed to hospital where he was diagnosed with a brain tumor. A biopsy of the tumor revealed that he had glioblastoma or stage 4 brain cancer.
Because of its location on his motor strip, Brian’s tumor was deemed inoperable, as surgery would leave him paralyzed. Furthermore, the genetic makeup of Brian’s tumor (IDH wildtype and MGMT unmethylated) made it less likely to respond to chemotherapy. All these factors rendered a terrible prognosis even worse in Brian’s case.
Prior to the diagnosis, Brian’s life was as close to perfect as it gets. He had moved to Canada and he was finally starting his life with his wife Roxy after years of having a long-distance relationship. He was otherwise healthy and active. In fact, 3 weeks prior to the diagnosis Brian and Roxy had completed a half-marathon. This diagnosis changed their lives forever.
If you know Brian, you know that he is strong-willed, determined, optimistic and a genuinely nice and kind person who has so many plans for the future.
Brian bravely fought the odds and he completed standard of care treatment (without resection as the tumor was inoperable) consisting of chemotherapy and daily radiation for 6 weeks followed by additional chemotherapy for 7 months. After 3 clean scans, his tumor progressed with a vengeance with multiple lesions that appeared practically overnight.
You can learn more about Brian’s journey on his website:
https://chisroxy.wixsite.com/brianbattlesgbm
The bravest, most positive and optimistic person I know, Brian is determined to beat this disease. In January 2021, he enrolled in a clinical trial in Toronto and received treatment with experimental immunotherapy, but unfortunately this was not effective. In February 2021, Brian received the devastating news that he had further progression of his disease and was removed from the clinical trial.
He experienced severe brain swelling, lost all function of his right side and his memory temporarily and required hospitalization. Thankfully, the swelling is currently kept in check with steroids, Brian’s mobility is much improved and he has recovered his memory. He is also on last line chemotherapy. But this is not a long-term solution.
There are no more therapy options for Brian in Canada and because of the nature of his multifocal disease and steroids use, he is not a candidate for clinical trials in the US.
Serendipitously, he came across a personalized gene-based vaccine treatment readily available in Germany. This treatment uses a patient's specific tumor mutations to create a vaccine which triggers his or her own immune system to kill cancer cells (these can normally evade detection by the immune system).
Similar treatments are available in the United States and they have shown promise, but only as part of clinical trials. Unfortunately, Brian’s current condition and medications would preclude him from enrolling in any of these trials.
The treatment in Germany has seen very high response rates in patients with advanced cancers, many of whom are in remission or cancer free years after treatment. Specifically, a few patients had multifocal GBM (like Brian’s) and they have seen their tumors disappear.
So Brian and Roxy are choosing to pursue this hopeful avenue.
This will however entail monthly trips for two (as Brian requires some assistance with his mobility) to Germany over the course of two years and the treatment itself is an expensive option requiring upfront payment of a grand total of $60,000 USD.
A donation of any amount will help them fight this monster of a disease and give them a chance at growing old together.
Thank you for keeping Brian in your thoughts and prayers!
Andrea