I completed phase 2 of the chemo induced neuropathy(CIN) research a few weeks ago. Although it was a pain in the butt to drive to San Francisco 4 times a week for 2 weeks, I quite enjoyed being out and about doing things. I also rediscovered the joys of books on tapes and podcasts.
This phase was looking at the effectiveness of a near infrared light device on treating CIN. It is already approved for diabetic neuropathy, but the physical mechanism for CIN is different so it has to be studied separately. It required 8 visits over 2 weeks, treatment with the light machine every visit, a daily pain/sensation diary, and lots of blood work and testing.
Neither I nor the researchers I met with knew which arm I was randomized into. Someone came in every day and checked the switch on the machine, then my feet were strapped in and the light show commenced. Even if I was not getting the treatment, the lights still went on when the machine was turned on. The machine was a custom-built prototype that sat in a framework that was about 1 yard square. There were straps and sensors and a place to put my feet. The machine ran for about 10 minutes each session. I was going to try to sneak a photo but decided that perhaps that was indiscreet.
Just about every day I had some sort of testing. After the 4 poke fiasco at getting blood drawn, I asked if they could draw from my port, which made the next three tests much more smooth. I had the sensation tests several times, during which I think that I had even less response than the first tests, then the balance tests again. I think that I did better on those tests because the more I did them, the more I figured out what specific skills I had to draw on to be successful, like standing up very tall during the test on the squishy surface.
Yet again, I found myself inside my head too much during the testing. This time, I was unsure about what I was supposed to be feeling, and worried about the placebo effect. Was I not getting treatment and imagining new sensations? Did that make me look stupid? Was I getting treatment and it wasn’t effective? What exactly was I supposed to be feeling? I take a lot of medication to control the pain, so there really wasn’t any way to determine if the machine was lessening any symptoms. Reduction in numbness? That was hard for me to determine, and if I did imagine any reduction, it meant pain sensations crept in. But overall the researchers were very happy with me. They knew that I was trying hard and that I made a good effort to communicate what was going on.
I won’t ever know whether or not I actually got treatment, but I will get a copy of the final study report. If it turns out to be effective, then it’s something that I will be able to try out when it’s commercialized. If not, then that’s good information as well. Being in the study made me feel like I was contributing to important advancement of knowledge, and all it cost me was some time and a few unpleasant sensations. Well worth it, I think.