Dax Bykerk’s Immunotherapy Story

It was around November 2011, when I first discovered a little lump on my right wrist. The labwork showed that it was melanoma. I was referred to the Melanoma Institute in Sydney, where they discovered that my melanoma was nine millimeters deep. Anything over four is considered the worst category, so it was a bit scary initially. 

In December 2011, they did a sentinel node biopsy to see whether it had spread or not. When they got the results, they discovered there was a tiny—less than a millimeter—positive result in the sentinel node. So I was advised to have a full dissection of the lymph nodes on that side of the body.

That operation was actually quite serious. I had a bag that collects the lymph fluid sticking out of the side of my chest for about six or seven weeks. That was a bit of a challenge, getting around with that tucked under my shirt. The operation kept me in hospital for three or four days, and then I was at home for another week after that. They did a scan at that point and I was clear of any other tumors in the body, which was great.

I think it was around June or July 2013 when Dr. Long started talking about these new trials with PD-1. She mentioned there were a couple of trials that were starting around September. Luckily for me, there was a trial involving this anti-PD-1 drug, which I was able to get into.

My particular trial had three arms. One arm was the anti-PD-1 drug every three weeks, which I’m on. The second arm was the anti-PD-1 drug every two weeks. And the third arm of the trial was people who got ipilimumab, which obviously was the cutting-edge drug a couple of years ago and as such had some good success, but the side effects were apparently a lot more severe with that particular drug.
           
On this particular trial they actually tell you there’s no placebo, which is a good thing. As a patient, that’s something that’s a bit scary [the possibility of getting a placebo]. With this trial, regardless of what arm you’re in, you were definitely getting some form of treatment, and they were going to tell you which one you were getting.

I started the treatment around October 2013. It involves a transfusion, where you go to the hospital once every three weeks. You meet with the doctor, you have blood tests that morning, and then you go next door and get the drug intravenously. It takes about an hour and a half at best, and then you’re on your way. 
 
In terms of affecting lifestyle, it’s very minimal. For me, the side effects have been very minimal. I feel exactly like I did two or three years ago in terms of physically what I can do. The only side effect I have recently found with this particular drug is it does make some of your hairs go grey. 

I didn’t bring it up with the doctor, because I thought maybe it was just naturally happening, but luckily she pointed it out, because some of the other patients must have had a similar reaction. It’s not something I should be complaining about, because obviously there are far worse side effects with other drugs.

My mum just had some chemotherapy for early stage breast cancer. She had a major infection because of the chemo and has been in the hospital for the last eight days and almost died, but she’s getting better now. But it just shows that something like chemo, because it destroys everything in your body, can be a lot more dangerous. Whereas with my treatment, I haven’t seen any change in quality of life, which has been fantastic.

It’s definitely worth trying, if you can get on a trial—particularly because this drug has very few side effects. And I’ve always got the option of falling back on some of those other drugs that are approved, like BRAF inhibitors. So for me, it made complete sense.