Facing Reality: Navigating Glioblastoma Amidst the Noise of Misinformation

I recently read a post on one of the support groups I follow where someone asked if nicotine patches could help cure or treat glioblastoma. This question upset me because it seems like some people prey on those with poor prognoses by spreading false information. Being the research enthusiast I am, I dug into studies from 2018 to 2021 that tested this theory. The trials were few, and the results were disappointing. It reminded me of other miracle cure stories, like those from scientists in Switzerland claiming to reduce tumors—big news, then nothing.

I remember living in San Francisco twenty years ago, hearing stories about HIV/AIDS cures involving monkeys in labs or children in other countries being miraculously cured. These tales always seem to pop up around diseases with no known cure, and these stories would often fizzle as fast as they gained traction. So, this got me thinking: should we try anything to sustain our lives, even if it gives us false hope? Or should we face the inevitable and just live a healthy lifestyle, hoping for the best?

I feel that everyone needs hope; I certainly do. But when you look at glioblastoma, the outlook is challenging. According to the National Cancer Institute, there is not a cure yet, but there have been incremental improvements in survival rates. In the mid-1990s, the median survival was only 8-10 months, but it has now almost doubled to 15-18 months. Additionally, while virtually no patients survived five years after diagnosis in the mid-1990s, now 15% do. Despite these improvements, the news remains grim, especially since the cause of glioblastoma is still unknown. The first recorded cases of gliomas date back to the 1800s, and we are still grappling with understanding this disease. Again, not great news.

The timeline for treatment has not advanced much in the last several decades, except for the Optune Gio device, which I am currently using. While it has shown improvements, "great" is subjective. When dealing with such small numbers, "great" means slightly better. It might be great in dog years, but for us humans, it is not so significant.

I usually get pegged as a Debbie Downer, but I write this to urge my fellow warriors to stop searching for a miracle cure. Instead, accept what you cannot change and use that time to better yourself, spend time with your family, and make healthy choices. I am not a hypocrite when I say this—I still plan to beat this, or at least achieve what I can, by setting small, attainable goals and helping others along the way.