Advanced cancer: let's set new standards

When my dad, Wisconsin Oak, was diagnosed with Stage IV pancreatic cancer in October 2017, one of the very first things he did was tell his local oncologist “I want to increase the variance of my survival, even if it results in landing on the unfortunate side of the mean.”

As I write this post a year later, our whole family has gained a greater appreciation of life itself being a terminal condition. Yet within any bounded scope on the clock there exists an infinity - and for us over the last year this has been deep with meaning, relationship, love and joy. We are on a journey that we believe is increasing both my dad’s survival variance and expectation. We are benefitting massively from the experience, intelligence, support and strategic localized leadership of numerous doctors as well as scientists and other healers, not to mention other trail-blazing cancer patients. All of this has happened in the context of our family becoming a Category One Cancer Team - and taking upon ourselves the responsibility of designing, implementing and monitoring our own treatment strategies.

There are major challenges to come, and even as we learn more and more about cancer, biology and treatments there is an expanding edge of the unknown - much of it adverse. We are expanding into this uncertainty from the stable platform we have created for ourselves. From this position we are gathering more data, improving our capabilities, support team and options, and acting and adjusting as we learn more.

If this sounds like something you have thought about doing, or a doing partly, we welcome you to take the jump. In the face of massive uncertainty, it becomes more and more clear to us that embracing the path of a Category One Cancer Team is our best shot.

We are becoming the change we want to see in the world. We recognize that the best human research will be done in small trials designed around strong causal hypotheses and tailored to individuals. This is an approach that matches the subtle, multi-variable nature of the disease. To have this happen within the existing clinical trial system would require reversing the forces that push for single-substance clinical trails of hundreds or thousands of people. I hope that happens. But there’s no reason to wait around for it.

Few to many If we can provide a forum for Category One Cancer Teams to record their n=1 experiments, and this can be done in a verifiable way that still protects privacy, then we have the possibility to leverage our experience, connect to researchers and trailblazing practitioners and pharmaceuticals, and really move the needle towards improving and lengthening the lives of all people with terminal cancer diagnoses.

Alignment of incentives Category One Cancer Teams are heavily incentivized to find durable results with a high quality of life. Recognizing these teams as the incredible asset they could be requires reversing another belief embedded within the existing medical system: the belief that patients cannot ethically be responsible for their own treatment choices. In fact, recognizing the right of each person to choose how to handle a terminal diagnosis is far more ethical than wasting human life with poorly designed, massive phase 2 and phase 3 clinical trials.

Connecting the dots There are signs of new ways of doing things for example in the recent announcement by the Lampidis Foundation regarding 2-DG. I believe this is just the beginning. If you or a loved one has an end-stage cancer diagnosis and you are either either a Category One Cancer Team or believe you could become one, I invite you to join forces and get in touch with me to discuss adding summaries, reports and data about your cancer treatment strategies. Or find your own way to contribute to the coming changes in cancer treatment! Ideas for what cancertreatmentdata could do to improve are always welcome.

Jessica Millar