“In the beginning of 2013 I was diagnosed with cancer of the tonsils. I answered “Yes” to the question whether I wanted to take part in a study, and was randomly selected to be treated with the antibody Erbitux in combination with radiation therapy. I was injected with Erbitux weekly and I was radiated altogether 34 times to the neck and the nearby lymph glands. The treatment brought with it serious radiation injuries which caused me to develop difficulties in eating and swallowing.
My tongue and jaw also suffered considerable loss of function and I developed a sort of pocket in the esophagus where food could become lodged. I had great difficulty in opening my mouth more than a few millimetres. It was impossible to eat via the mouth and I received my nutrition via a PEG in my stomach.
It was an elderly lady, the mother of a good friend of mine, that read an article in the Swedish newspaper Dagens Nyheter about the neuro-muscular training device IQoro, where the treatment method was described. I Googled the product and felt straightaway that what I was reading was a good fit for my problem. What made the strongest impression was the information on how the training device could affect the brain’s possibility to modify itself, and in this way find new routes past the injured nerve pathways and could partially repair the functions in the damaged areas. I decided immediately to order one - ‘if it works it works, if it doesn’t . . .’ I reasoned.
Already after just a week’s training with IQoro, I could open my locked jaws, could open my mouth much more freely, and the mobility in my tongue had increased considerably. I trained according to the instructions: 3 x 10 seconds, 3 times a day and felt a gradual improvement after a couple of weeks. Even in the pharynx where the muscles were radiation-damaged with severely reduced function.
My goal was to be able to eat via the mouth again which the doctors thought could not happen in the short term. But after four months’ training and careful eating training I decided that the stomach pipe would have to go. I wanted to travel to India. I love to feel the freedom to explore new territory. It makes me feel alive and feel good. So, against the doctors’ advice, the pipe was taken away earlier than planned. I travelled to India where the issue was put to the test. But, in fact, it worked to eat again - even if certain dishes were more difficult than others.
I’m convinced that IQoro played an important role in my rehabilitation. I talked about it to my doctors, my dietician and my dentist; all of whom had seen my improvement. I got the feeling however, that the health care system is not exactly the first to be curious and interested in new innovations. Poor, I think! This is about a research-based product that actually helps, and I think that it should be the healthcare systems’ responsibility to find out about the products and make IQoro available when this device really makes a difference.
There were two more long trips to India. Almost two years after the diagnosis I began to work full-time again. The radiation injuries after my cancer treatments are partially chronic, but it works. When I travelled off to India I was really tired of everything to do with my illness and I ended my training with IQoro a little too early.
Some problems remain, but not at all to the same degree as earlier. Now I have promised myself to start the training process again and follow the training regime for at least 100 days without break. I feel motivated and certain that I can come even further on my road to full rehabilitation.
Thomas Gerdin, Stockholm