After diagnosis, the next step was a treatment plan. I was to be referred to yet another hospital, Princess Margaret Cancer Centre, for radiation therapy. I would be under the care of Dr Normand LaPerriere. A few days later I attended his clinic for the first time, and was taken through a treatment planning session where I had a mask molded for my head (a lot like a hockey goalie’s mask) by means of which I would be immobilized for radiation treatments. Dr LaPerriere is a likeable person, who answered my questions as compassionately as any doctor I have met. However, when it came to the question of prognosis, he was clearly uncomfortable about telling me the hard news. I embarked on a course of 25 radiation treatments, which were given daily over the ensuing 6 weeks. The radiation therapy appointments only took about 20 minutes each day, but because my wife had to drive me to them, each appointment used up half the day.
Around the fourth week I started to lose my hair in the areas that the radiation beam was focused (basically the sides of my head). My hairstyle started to resemble a Mohawk cut, so I made a visit to the barbershop and had my head shaved. I also got radiation burns to the skin, which resembled sunburn. Under Dr LaPerriere’s direction I was tapered off the Decadron. I was glad of that because I was starting to resemble the Michelin man! Under the Decadron regimen I had started to gain back the leg function that I had lost, and was able to walk quite easily, with only a trace of awkwardness. Driving, however, was still out of the question. I had never had a seizure, and was therefore legally still allowed to drive. However, I was sensible enough to not get behind the wheel, because the sensation of pressure on the sole of my right foot was not enough for safe use of the brake and gas pedals. As the weeks went by, there was a continued gradual improvement, so I knew that sooner or later I’d attempt to drive again.
During radiation treatment I had my head shaved. My hair never grew back exactly as it was originally. Where the radiation was directed my hair is now thinner, prematurely grey and lies flatter. Nowadays I keep my hair short.
Towards the end of the radiation treatment, I asked Dr LaPerriere what the next step in my treatment should be. He offered to refer me to a neuro-oncologist at Princess Margaret, by the name of Dr Warren Mason. Dr Mason had already been recommended to me, by someone I corresponded with on the Internet, so I felt comfortable with the referral. I could have ceased treatment at that point, as I don’t believe any further treatment would have been offered if I didn’t explicitly request it. However, I had learned from my research that radiation and chemotherapy were often used as a one-two punch. The main question was which chemo agent to use. I asked Dr Mason about several different chemo drugs, and he patiently answered my questions. Not all the drugs were available at Princess Margaret, and Dr Mason thought that several of the ones I had read about were not very promising (high dose Tamoxifen, Thalidomide etc.). In the end we settled on CCNU (a.k.a. Lomustine, a nitro-sourea based cytotoxic agent that is administered orally). CCNU is an old standby, which is often dismissed as useless by desperate patients and aggressive neuro-oncologists alike. However, as Dr Mason pointed out, CCNU, and its cousin BCNU, were still the most proven chemo agents in the treatment of malignant brain tumors. The only problem was the “best” was not very good. Many GBM patients found no advantage from chemotherapy at all, but in a small minority of cases there is a significant clinically detectable response. The way it was put to me, why not try the standard treatment first, and if that didn’t seem to be working, then look for something else.
I had my first scan since the end of radiation treatment, and things still looked confused, but there was no reason to believe that the tumor had grown through the radiation. Therefore, after some blood tests, I was given my first prescription for CCNU, to be taken at lunchtime the next day, after fasting from 9 pm the previous night. I was also given a prescription for an anti-nausea drug called Zofran – the Cadillac of anti-nausea drugs – as it was expected that the CCNU would make me extremely nauseous. It turned out that the Zofran did no good at all, as a couple of hours after I took the CCNU, I started to vomit at frequent intervals for the next twelve hours. Nevertheless, my next scan showed that the tumor was not growing! After six weeks, I had blood tests to ensure that my platelet and white cell counts were not being badly suppressed by the CCNU. If they were, I would not be able to get the next round of treatment until the counts recovered. We discovered that, thankfully, my tolerance to the treatment was good. Many people have to quit the chemo regimen early because their blood counts do not recover well.
Dr Mason increased my Zofran dose for the next round, and I continued with the treatment. As it happens, I never again experienced the extreme nausea I got the first time around, and by the time I got to round five, I was back at work full time, taking the CCNU at lunchtime and then returning to my desk. I suspect that the initial nausea was caused more by extreme anxiety than anything physical. I was sick because I expected to be sick.