Kira was 9 years old. She had a rare form of brain cancer called DIPG. On Wednesday this week she died. When diagnosed, she was quickly given up by her doctors here in Norway and eventually the family travelled to Mexico to try to save her life. It did not work, but they tried. I never met Kira, but I followed her battle on their facebook group that was set up by close friends of the family. Love, help and money poured in from around the world. It is human instinct to try to help a small girl and her family battling “terminal” cancer.
Tom Marsilje was 45 years old. He was a cancer researcher, father of two young children, and 5 years ago he was diagnosed with colon cancer. On Wednesday this week he too died. When diagnosed, he soon became a patient advocate and did everything he could to help thousands of other colon cancer patients worldwide. His efforts were tremendous. His scientifically rigorous approach was admirable. But he, as pretty much every other cancer patient in the Western world, also had to fight the system. He helped set up a website to help colon cancer patients find promising clinical trials. But he himself was, for various reasons, excluded from joining any trials. As StatNews writes:
“He underwent surgery, radiation, and chemotherapy, like many patients, but he pinned his hopes on promising immunotherapy treatments being tested in clinical trials. But he was thwarted again and again.
An unrelated health condition and medical complications repeatedly shut him out of tantalizing clinical trials.”
Tom not only had to fight his disease. He also had to fight a system that is not set up to help patients like him. As reported by StatNews, Tom also tried to get a personalized vaccine developed, similar to the one Dyanne is receiving in Germany:
“Last year he even tried working with researchers at the University of California, San Diego, to study his genomic data in hopes that it might be able to be used to design him a personalized vaccine as part of a clinical trial. But his worsening condition disqualified him from that and other potential clinical trials.”
I messaged quite a bit with Tom about personalized cancer vaccines and also some other issues. Sadly, Tom never got to try the vaccine. The system was in the way.
Vlad was 42 years old. He lived in Molde, Norway, had a wife and two beautiful children. And he had lung cancer. This morning I woke up to the news that he too had passed.
How do I know Vlad? It started one day in March last year when I got an email that started like this:
My name is Jo, have a brother-in-law who got the diagnosis stage IV NSCLC (lung cancer) with the mutation EGFR L858R in May 2015. Since then, I have become an part time amateur oncologist…”
That was how I learned about Vlad and later got to know Elen and their kids and, most of all, Jo. From the day that Jo sent me that email, he and I have been brother’s in arms in this war. We quickly connected on several levels. We had both realized, like Kira’s family and like Tom, that we had to take charge of the care and treatment of our loved ones. We also both understood that our health care system neither had the incentives or competence to make much of a difference in the situations we were. We also understood that the chances of success were small, but that it at least made sense to give it a go. Jo and I have travelled to oncology conferences, connected with lung cancer researcher and patients worldwide and read scientific articles in the hundreds, if not thousands.
Like Tom, Vlad and his family not only had to fight the deadly cancer, but also the system which often seemed more interested in his passing than his survival. In the end, cancer and the system won.
When I woke up this morning to the news that Vlad had passed away, it was simply too much. I crawled back into bed, hid under the duvet and let the tears flow. Two young children have lost their father. A wife has lost her husband. Vlad has lost his life. Jo has lost his brother-in-law. Siblings have lost a brother. Friends have lost a friend. I know we sometimes cannot change the course of nature. Sometimes we, humans, have to accept being defeated by nature. But we should not tolerate a system that does not try to save the lives of young children, of young fathers and mothers. It is not acceptable to throw in the towel the day a young person is diagnosed with stage IV cancere. It simply should not be like that.
Humans were not designed to give up in the face of life threathening challenges. We are designed to fight for our survival. To try to overcome the challenges we meet. For that reason, the way our health care system meets “terminal” patients is not human. It is inhuman. It is brutal, stupid, and it certainly is unscientific. I firmly believe there are no incurable cancers. There are only cancers we currently don’t know how to cure, but which we still can try to cure with a large range of different treatments. A system that does not try is not something we should tolerate.
Can the system ever be fixed? I doubt it. Anyway, until that day, the best hope for patients is to take charge of their own treatments. Call it Do It Yourself medicine. Technology, the internet, sci-hub.cc increasingly makes this possible. There are, of course, no guarantees of success. However, by reading up on the science and medical literature related to a disease, by connecting with other patients and leading doctors and researchers worldwide, I do believe dedicated patients can improve their odds of long term survival.
How is Dyanne? Some fatigue, but otherwise fine.
So, in rage and tears, I will close by this slighly modified version of Dylan Thomas famous poem:
Do not go gentle into that good night.
Young age should burn and rave at close of day;
Rage, rage against the dying of the light.