What to do next? After 9 months of treatment, the chemotherapy had not shown any promising results. The tumors were still growing and it was uncertain how long I could continue with this treatment. There was an alternative. I had heard of an experimental drug that was being developed and tested specifically for my type of cancer.

With a chance of 1-in-2 million, getting my cancer is considered rare, and chances to participate in a specific clinical trial are therefore also very rare. The clinical trial I heard of was a phase-1 trial, which means that nothing is known of the drugs, except that it showed promising results on animals in the lab. In phase-1, the drugs are tested on humans for the first time and the purpose is to find out the correct dosis and unknown side-effects. Needless to say, these new drugs are toxic and have various possible side-effects, from constipation or diarrhea; to dizziness or even death. If I decided to participate, I would be a human lab rat (guinea pig), or as they say in Dutch: een proefkonijn; an experiment bunny.

Similar to chemistry experiments in school, clinical trials have a very detailed protocol. This needs to be followed to the letter to get comparable cases and hopefully useful (?) results: how much of the drug to administer, at what time, on which day, taken with food or without, etc. However, just like in school, it doesn’t put any restrictions on other daily things around the experiment: your general daily diet, when to sleep, how much to exercise, etc. I’ve heard of people taking weed during a trial or putting a high dose of turmeric in their food, which wasn’t restricted by the protocol, but the patient definitely felt it affected the outcome.

Being admitted into a clinical trial is overwhelming.  You need to meet numerous criteria (certain blood pressure, mobility, weight, tumor type and stage, previous treatments, blood values, etc.), willing to hand-over all your medical records, have frequent blood samples and CT scans taken; and willing to undergo at least one biopsy. If you meet the criteria and agree to all of the procedures, you need to sign a consent form. This feels as if you’re signing your life away. Because being in a clinical trail is also scary: no one is responsible, you can get unknown side effects, and it’s not certain that the drugs will have a positive impact on the tumor. And then, even when you follow the protocol rigorously, adhere to policies and procedures, and tolerate the drugs well, you’ll be kicked out of the trial when/if your tumor grows more than 20%.

Maybe because of the overwhelming procedures or the uncertain affects and outcomes, fewer than 1 in 20 adult cancer patients actually enroll in a clinical trial. I feel this number is frustratingly low especially when I hear people complain that there are not sufficient treatment options. The only way to get new medication on the market is by testing it rigorously and, yes, this means that it has to be tested on humans too.

I understand people are scared, afraid, doubtful, cautious etc. However, I feel that if you are in a position where conventional medication is not sufficient or not working, please have a good look at the clinical trials and register if you can.

The clinical drug might or might not help you, but any outcome will definitely help others. From a data analysis point of view, and as our school experiments showed; no result is also a result when trying to find new medications.

Uncertainty is probably one of the hardest things to deal with. Especially when you have a rare disease. Will this treatment work? Will I still be here in a few months? Am I eating the right things? What is causing this sudden pain in my stomach?

When I got my cancer diagnosis, it seemed like I got sick from one day to the next. Of course that is not true, but it all happened so fast. Thursday afternoon I was taking the bus home from work, on Friday I went to the doctor and the ER and Saturday early morning I woke up in a hospital bed when they were steering me into the IC unit. Life can take unexpected turns suddenly and fast…

When something unexpected and earth shattering happens, you have two choices: 1) retreat to a corner and give up, or 2) pull yourself together, step up and face it head on. For me there was only one choice. I’m not known for giving up without a fight. Ask my team mates who have sat through multiple three set tennis matches because I didn’t want to concede. Did I always win? No, but at least I tried.

If I have a choice between life and death, I choose life! I want to make plans and grow old with my wife. I want to see my son grow up, graduate and drive a car (in no particular order). So, how to begin a journey … when you have no idea where it’s going to end? After 6 months of wondering “why me?”, I realized that the first step on my journey would be this: be thankful, be positive, be grateful, be happy, try to live by the day and every day.

 

Every time a CT scan is made, roughly every two months, you tell yourself not to get your hopes up. You know what the odds are of the treatment being successful, but still you keep some hope that a miracle has happened …

The first time I had a progress scan was after surviving two months of the worst chemo possible. Inexperienced, I was really hoping something good had happened … no such luck. Chemo had done nothing and we had to look for a different treatment. The day we got the news was shortly before our Sebastiaan’s (our son) 1st birthday.

How do you celebrate such an event when in the back of your mind you realize that this could be his only birthday you’ll experience? That you might never see him on the playground, go to school, reach puberty or drive a car. Let alone graduate, meet a nice partner, maybe get married and maybe have kids.

After receiving the bad news, Martine drove us to San Francisco where we went to our favorite bar, Mario’s Bohemian Cigar Store Cafe on Columbus Avenue in North Beach. There we sat in silence looking out over Washington Square and the busy Italian Quarter. It was good to see people going about their business as normal. The world hadn’t changed, it was still the same. Only, what was life going to bring us?

We soon found out that we weren’t alone during this difficult time; a lot of family and friends came to celebrate his birthday and to support us. Although we didn’t talk much about the situation and Sebas was the center of attention, the nagging question remained in the back of my mind and probably of others. Would this be his last birthday for me?

For someone who was only used to going to a hospital when he had broken another bone, the first months after diagnosis were intense. While still trying to come to grips with the situation, the medical train had already left the station and was gathering speed.

My wife and I are very grateful for our aunties that stepped up and helped us through these months. Some of them retired nurses, they explained what the doctors were talking about. They familiarized us with the medical system and how to navigate it, made us aware that we needed to be more vocal and definitely push for explanations when we didn’t understand or when something wasn’t happening the way we wanted.

After a few weeks, surgery was deemed impossible, even by the Stanford surgeon nicknamed “the cowboy” because he did things others couldn’t or didn’t dare to. The recommended treatment by the experts from the University of Michigan was chemotherapy. As much as that frightened me, I trusted Dr. Hammer (and still do). We got off to a great start when we met him. He pulled up a chair, sat right in front of me, looked me in the eye and asked: “So, what kind of work do you do?”. I answered, “I’m an engineer”. He turned to Martine, asked the same question and got the same answer. To which his response was: “All right, let me start by saying that you’re NOT a statistic. You’re a person and any outcome is still possible. You understand?”. We all laughed. Nice reputation we engineers have!

The first-line chemo consisted of three different types of which the oncologist said: “we’re going to hit the cancer as hard as we can”. She also could have said that they would try to kill the cancer before they would kill me… the chemo was tough.

Vomiting, nausea, ER visits, loss of appetite, nothing but dry rice for a week and hair loss. I was convinced this was going to work. Until after two months (i.e. two cycles) the scan showed that the chemo had done nothing. Really?? Did I survive all of that for nothing?