Week 54: A brief update & the importance of getting tested

Written by Lars Haakon Soraas

Week 54 in the war on cancer has passed. Here are the highlights:

  • Dyanne was in Frankfurt from Wednesday to Thursday this week. She there got another vaccine injection as well as nivolumab.
  • Dyanne has been a bit tired this week and the cough has still not gone away.
  • We are still evaluating what to do with the tumor in the lung that seems to have increased in size. To ablate or not to ablate is still the question. Hope to make a decision on this soon.

In other news: I have been in contact with some friends of a young, never-smoking, lung cancer patient here in Norway. Initially she was only tested for EGFR, which turned out to be negative. She was started on chemotherapy. Based on the latest research in the field, which shows that most never-smokers with lung cancer who are not EGFR positive are ALK positive, I suggested (ok, insisted is maybe a better word…) to her friends that she should also be tested for ALK. There was some back and forth, but they eventually got this organized. This week they learned the ALK test was positive. This means the patient can be treated with ALK inhibitors instead of chemotherapy. ALK inhibitors have much less side effects than chemotherapy, and patients getting such therapy typically have life expectancy measured in years rather than months.

What is the lesson from this? If you, or someone you know, is a never-smoker and get lung cancer, DO  NOT expect public Norwegian hospitals to automatically do the mutation testing they ought to do. Make sure they test for at least the following mutations: EGFR and ALK. And if these are negative, a number of other mutations should also be checked for: ROS1, RET, BRAF and probably also some others which either Foundation One, Caris Oncology, Neo New Oncology  or Guardant Health can tell you about (all these are companies that specialize in mutation testing for cancer patients). Of course, all this only matters if you want to live. If you are happy to throw in the towel, don’t bother with the testing.

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