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Notes on the Optune

2016-09-28 Optune Sore.jpg
A sore caused by the Optune


I know a lot of my friends are intrigued by the Optune, so, since I just talked to the oncologist about it yesterday, I figured I'd give a little report on how life with the Optune is going and what the future looks like.

Wearing the Optune certainly isn't all fun and games. The new version is much smaller and lighter, and that has made life easier, but I still have to pay attention to the fact that I'm connected to it and need to pick it up if I want to move anywhere. If it's plugged into a wall outlet, I need to make sure I unplug it before I move. If I'm not plugged into a wall outlet, I need to keep an eye on whether the battery is running out of juice. The biggest discomfort is that I have to wear it almost nonstop. The transducer arrays are literally glued to my scalp, so it can feel quite claustrophobic at times. A couple of weeks ago when I peeled the arrays off so I (or rather Denys) could put new ones on, it felt so good I started to cry. They warn you upfront that the most common side effects are headaches or irritation of the scalp. I haven't had any headaches, but the picture above is of a sore caused by the Optune a couple of months ago. It wasn't painful, and they gave me some non-stick gauze to put over it. After that it healed very quickly. Other than that there are occasional irritated spots that Denys makes sure he avoids when he puts the next set of arrays on.

As I think I mentioned earlier, over time I've learned that there are people who have been wearing the Optune for years. I wasn't sure what that meant, so yesterday I asked Dr Mrugala whether I'd be wearing the Optune after I finish chemo in March. What was interesting about his reply was that he basically said it would be up to me. What would I base my decision on?' I asked. Mostly how well I was tolerating it, he said, for example whether it was causing major scalp problems and whether I was able to wear it for an average of 75% of each day, as they prefer.

The reason I was asking him about the Optune was that I want to go to Yap next May. I asked him whether, if I chose to continue with the Optune, it would be okay to take a three week break while I traveled. No problem, he said. My impression from this part of the conversation was that they simply don't have enough data on the effect of the Optune to be able to give much advice. My pattern of usage (which they download into a database every month) and ultimate fate will be another data point in the research. Eventually I'll want to ask if there's any length of break that they *know* is too long, but my guess is they probably don't know. It's too long if the cancer comes back during the break. For all I know at this point, maybe the cancer comes back eventually whether you take a break or not.

My insurance company denied coverage of the Optune in the beginning, but Mrugala and the manufacturer appealed. While the appeal was being processed, the insurance company allowed me to start using the device. Now I've received three letters from them in the last week saying the appeal has been denied, because there's no proof that the Optune improves treatment outcomes and therefore use of it is merely "investigational," which they won't cover. Mrugala is confident that he and the manufacturer can persuade the insurance company to cover the device in the long run. Meanwhile, this bureaucratic battle makes me feel like a guinea pig on the frontlines of science.

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Comments

( 9 comments — Leave a comment )
kdotdammit
Oct. 25th, 2016 05:16 pm (UTC)
Hard stuff. Sending love, hugs, and air to breathe.
randy_byers
Oct. 25th, 2016 05:37 pm (UTC)
Thanks, Kim. I'm getting a massage today, and I'm really looking forward to letting go of some of the stress.
voidampersand
Oct. 26th, 2016 05:20 am (UTC)
Health care finance is non-Euclidean.
randy_byers
Oct. 26th, 2016 03:08 pm (UTC)
But is it Null-A?
voidampersand
Oct. 26th, 2016 03:28 pm (UTC)
You would like to have a Vogt?
randy_byers
Oct. 26th, 2016 03:30 pm (UTC)
I already Vogted.
scarlettina
Oct. 27th, 2016 02:32 pm (UTC)
Let me know if you do go to Yap. I have a friend living and working there with the Peace Corps, and she'd be a great connection to have. (She's also pretty awesome in general. You can read about her adventures on Facebook--her name is Joyce McClure and if you friend her, let her know I referred you.)
randy_byers
Oct. 27th, 2016 02:50 pm (UTC)
Wow, small world! I just searched "Joyce McClure" on Fb and get a long list. I'd love to read her posts, if she's writing about life on Yap. Is there a way you can invite me to be her Friend? And maybe give her a heads up about who I am?
scarlettina
Oct. 27th, 2016 04:26 pm (UTC)
I'll PM her and you and introduce the two of you.
( 9 comments — Leave a comment )

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