If you have lung cancer, ensure you get proper mutation testing!

Written by Lars Haakon Soraas

This blog post contains an important advice about testing that is relevant for most lung cancer patients in Norway. Probably the advice is relevant for most lung cancer patients in the UK and also many other countries. But first, weeks 125 and 126 in the war on lung cancer have passed and here are the highlights:

  • Dyanne still has fatigue and we still suspect low iron is the cause. She is taking iron supplements and we hope this will help boost iron and hemoglobin.
  • We have sent a blood sample to a lab in Paris to measure the concentration of osimertinib in Dyanne’s blood. Osimertinib is the main drug she is taking. The reason for doing the blood test was that we were a bit concerned that a drug Dyanne is taking to protect her stomach (due to the radiation she has received) could interact with the uptake of osimertinib. Thankfully, the blood test showed that Dyanne has a good level of osimertinib.
  • Dyanne and I were in Berlin for a short break for a few days. After that Dyanne went to Frankfurt and got another injection of the personalized peptide vaccine.

This coming week Dyanne has new scans (CT and MR). We cross our fingers for good results.

Norway has been in winter mode the last few weeks. Cold temperatures and lots of snow. That makes for good skiing conditions and we have been both cross-country and down-hill skiing. And, of course, sledding. Attached is a picture of Dyanne and Naomi skiing at Voldsløkka in Oslo (next to where we live). It is not often you can go skiing downtown Oslo, and it was a great experience 😉

Then to the important piece of advice for lung cancer patients: Make sure you get properly tested! Here is an excellent blog post on this topic by Dr Emma Shtivelman of CancerCommons:

Targetable Mutations in NSCLC: More Testing Needed!

The blog highlights the importance of doing proper mutation testing of lung cancer patients at the time of diagnosis. I have learned that routines for testing here in Norway are far from what they should be. I also know the same is the case in the UK. It seems, for instance, like ROS1 is rarely tested. Very good medicines exist for ROS1 mutant lung cancer and if hospitals don’t test for this, they will not know which patients have these mutations and hence they will not treat these patients correctly. Maybe around 10 people will die prematurely every year in Norway due to this. And if you count the other mutations that ought to be tested, who knows how many lung cancer patients who get their lives cut short due to inadequate testing.

So what is the lesson from this? If you are a lung cancer patient in Norway, make sure that at least the genes mentioned in the blog post by Emma are tested for. If they are not, find a way to do such testing privately (the company Mosaic Medical can help with this, or you can contact directly one of the companies offering such testing, for instance Caris, Foundation Medicine or Cegat) or try to convince your local hospital to do the testing for you (but don’t be surprised if they are unwilling to help you).

Finally, CancerCommons and, in particular, Emma have been a great support for us for a couple of years now. Any cancer patient can reach out to CancerCommons and get free advice. I highly recommend their excellent offering.

Have a good Sunday!


Dyanne and Naomi skiing in Oslo

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