Way back in October 2012, within the first few weeks of my diagnosis, I received taxol as the first phase of my chemotherapy regimen. It likely didn’t do much, at least for the main tumor, and I dropped the last of the planned 12 treatments to move on to FAC. But taxol, which focuses on microtubules, is infamous for causing nerve damage, and indeed within a few weeks of the treatment I developed chemo-induced neuropathy.
In the scheme of things, my neuropathy is not bad, and of course the main thing is that I am alive, right? It is only in my feet and not my hands which is very fortunate. And then the “pain” is tolerable. In neuropathy pain is defined very broadly. For me, it isn’t pain like from a cut, but more of a feeling like your feet are cold (but they are not). Perhaps the most annoying thing, is that it is there all the time – well, only when I am awake – and most of that time it is a dull ache, with some tingle and the cold feeling, perhaps a 1 or a 2 on the pain scale pf 1 to 10. It does flare up, several times a week, particularly when I am tired, and then reaches maybe a 5 or a 6. I can certainly imagine worse, but it is kind of there, and is of course a constant reminder of being a cancer survivor (like I needed one).
The damage that underlies it – the damage to my sensory nerves that go to my feet – is, under current medical science, irreversible. So, if you can’t fix the damage, perhaps you can learn to ignore it? That is the direction that Dr. Sarah Prinsloo and her team are exploring, and I just joined their latest clinical trial: Duloxetine and Neurofeedback Training for the Treatment of Chemotherapy Induced Peripheral Neuropathy.
The core approach here is to use neurofeedback training to teach your brain to disregard the pain signal coming from the damaged nerves. In this trial they are comparing it with, and combining it with duloxetine an anti-depressant that has some efficacy for neuropathy as well.
Neurofeedback training is a type of therapy that uses an electroencephalograph (EEG) and a computer software program to measure brain wave activity and may help teach patients with peripheral neuropathy (nerve damage) how to change their own brain waves to lower their feelings of neuropathy and help improve their overall quality of life.– from the clinical trial’s web pages (see below for links)
Neurofeedback training is cool – you wear a set of electrodes on your head like for an EEG, and participate in a series of trainings using a screen and a very simple game. For example, you might be revealing fragments of nature photos, one block at a time. The blocks of the photos are only revealed when your brain is giving the desired activity pattern in the spots that are identified as sensing your neuropathy by an initial calibration EEG. Over the course of the training sessions – typically 45 minutes long, and delivered 3 times a week for five weeks – your brain learns more and more to be in the state that reduces the neuropathy pain, and this leads to an improvement in quality of life, at least among those who respond.
And many people respond. In a recent paper, from a prior trial, Dr. Prinsloo and her colleagues stated:
[electroencephalographic neurofeedback] appears to result in long-term reduction in multiple [Chemotherapy-induced peripheral neuropathy] symptoms and improved postchemotherapy [quality of life] and fatigueJ Pain Symptom Manage. 2018 May;55(5):1276-1285.
On a personal note, I experienced this treatment myself as part of a trial from Dr. Prinsloo and her team back in 2014, and the impact was very clear for me. My experience of the neuropathy was noticeably reduced for several months, and the effect lasted altogether for about a year. I am excited to see what the impact of this new round of treatment will be and of course always glad to be part of research designed to help cancer patients. Stay tuned for updates.
Link to the trial’s page on NCI’s Clinical Trials website: https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2020-06553
Link to the trial’s page on clinicaltrials.gov: https://clinicaltrials.gov/ct2/show/NCT04560673