Fighting for Survival: My Struggle with Keeping Optune at Therapeutic Level

I started wearing Optune Gio about three months ago, and it has been quite a journey, to say the least. Understanding the different types of therapy and how they work can be challenging. One aspect I found particularly confusing is the percentage of time you need to wear Optune Gio for it to be effective, known as the therapeutic level.

If you are reading my blog, you probably already know what Optune Gio is. But for those who do not, here is a brief explanation: Optune Gio is a cap-like device worn on the head to prevent tumor growth. It is powered by a small battery pack. Clinically, Optune Gio delivers Tumor Treating Fields (TTFields) therapy to the tumor region. Previously known as Optune, it is a noninvasive, antimitotic cancer treatment for glioblastoma (GBM). TTFields therapy uses electric fields to physically disrupt cell division.

I was excited to finally reach 76% (month prior it was only 60%), but it was a struggle. I felt like I never took it off, except for a few hours on change days. Some days, I got lazy and wanted to swim and relax in the sun, so I left it off longer than I should have. What does this mean in the grand scheme of things? From what I have read, not much. According to a 2017 study by Optune, patients who used Optune 70-80% of the time had a median survival of 21.7 months. Those who used Optune more than 90% of the time had the greatest chance of survival, with a median survival of 24.9 months from randomization and a five-year survival rate of 29.3%.

Do these numbers make me hopeful? Yes, they do. In addition to using Optune, I have changed my diet, altered my lifestyle, reduced stress, and strive to do all the right things. These changes are challenging, but I believe the combination will benefit me in the long run. I was diagnosed in November 2023 and have not experienced any tumor growth or progression since. I want it to stay this way. As Novocure CEO Asaf Danziger said, "We are pleased with this latest analysis showing that GBM patients who were the most compliant with Optune had the greatest chance of five-year survival."

Part of this is bittersweet because I worked hard just to reach 76%, so I cannot imagine how difficult it must be to get to 90%. I want to live so badly that I am willing to deal with the thought of never having hair again, enduring scalp itch 24/7, avoiding prolonged sun exposure, having people stare at me with this contraption on my head, and never feeling quite normal. What I cannot handle is the feeling that I have failed my family if I do not maintain 90% usage to extend my life as much as possible. I want to see my nephew grow up and hold my husband again. These are the things that are so heart-wrenching and cause me so much stress. I can never quite stop worrying about everyone else.

So, what do I do? I fight. I fight to stay alive for myself and my family. I never give up and try to stay strong. But it is so incredibly hard. It is hard not to be short with everyone, not to want to crawl into a hole and cry. It is hard. But what can we do? So, 76% is not awful. Next month, I will get it to 80%, then 85%, and then 95%. I will fight.