Novo TTF-100A, First Impressions

I thought this was going to be easy. At least easier than taking and suffering the consequences of chemotherapy.

I’m talking about the treatment I’ve just begun — wearing the NovoTTF-100A device. It’s only about 4 pounds of equipment and some tape and wires on the head. Doesn’t sound so tough.

But in only five days of treatment, I’m weary from this. Even four pounds dangling from your shoulder constantly can be tiring. And when not carrying the device, I’m tethered by wires to an electrical outlet. I’m able to do my normal activities. It’s just a bit trickier. For instance, I went to a concert three days ago. It went pretty well but stubble on my head interfered with the connections and I had to remove the device for several hours. Not a big deal but I need to wear it as much as possible for maximum benefit. Since my tumor has clearly grown rapidly, I need to maximize time. Coincidentally, here’s a picture of a guy seated in front of me at the show.

brain tattoo

Other complications include:

  • electronics and water don’t play well together.
  • the head gear remains in place all the time. It’s like wearing a baseball cap ALL THE TIME, even to bed. I really want to take my hat off.
  • heat. The unit gets warm. Batteries get warm. Arrays on the head warm up. This will be great in winter, but not so much during summer in Atlanta.

I’m not officially complaining. I’m sure things could be worse. If it works, I suppose it’ll all be worth it. I get an MRI to see progress in about three more weeks. Success will be either no further tumor progression or, hopefully, tumor reduction.

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5 responses to “Novo TTF-100A, First Impressions”

  1. Kitty says :

    You’ve done a great job of describing your kinship with your headgear. And you’ve done it using your best friend who has not seemed to wane in the least: Humor. Keep it coming. xxxooo

    • Ken says :

      Thanks, Kitty. Because a lot of people’s comments tend to put me on a pedestal of positivity, I’m compelled to point out that, of the Characteristics with whom I keep company, Humor is not my best friend. He’s simply one I try to present more than others. He’s just a yin to the yang, Dour. They, along with many other qualities, always seem to be competing for my attention.

  2. Louise Leroux says :

    I was so very happy so find your journey through GBM…my husband has stage four and is at halfway point of chemo and radiation- i loved how you called it slash and burn….Anyway I am trying singlehandedly to bring TTF 100A to Canada….there has been no application to health Canada to bring in the device and I am trying to convince our team here that they should be the first to offer this device- in the bleak landscape that is GBM is would be nice to have some hope…about humour….my husband wore a t-shirt i bought for him to the cancer centre this morning….it has a happy stick man on it and it says ” I pooped today” really brought smiles and giggles to the radiation team, Dr, and a few patients too!! all the best on your journey.

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