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.