Weeks 162-164: lepto scare

Written by Lars Haakon Soraas

Weeks 162, 163 and 164 in the war on lung cancer have passed. The weeks have been quite heavy on travelling, hence the delayed update. Here are the highlights from these past three weeks:

  • Dyanne finished stereotactic radiation of two lung metastasis. Doses were 6 Gray (Gy) times 3. The last lung lesion is planned biopsied. Hopefully this will happen soon.
  • We then went to Heidelberg i Germany where Dyanne was treated with an oncolytic virus. The virus in question is a parvovirus. It is still (naturally) an experimental cancer treatment. The hope is that the viruses will be synergistic with the other immunotherapy treatment Dyanne is receiving. We were in Heidelberg for around a week.
  • We then spent some days in Paris on an extended family holiday.
  • Dyanne has also done a new MR scan of the brain. On the previous scan there were some things showing up that the radiologists were uncertain how to interpret. In particular, there was uncertainty about whether the cancer had spread to the meninges that surround the brain – so called leptomeningeal disease (LMD). If you have lung cancer, and don’t want to die, LMD is basically something you want to avoid. This new scan did not provide much clarity, but it seems there are no major changes at least. We are crossing our fingers there is no lepto.
  • Dyanne did a CT scan this past week and we should learn the results at the end of this coming week.
  • Despite all the treatment and travelling, Dyanne has been in pretty good shape. Some fatigue and reduced appetite, but otherwise good.

I have also been at the World Conference on Lung Cancer (WCLC) in Toronto. It was good to meet some other patients and researchers. However, when it comes to EGFR mutant lung cancer (i.e. the type of lung cancer Dyanne has), there was not much progress to report on. It is pretty clear that the whole field has stagnated after the arrival of osimertinib (a targeted drug that undoubtedly was a major step forward). A hope is that the arrival of advocacy groups, such as the EGFR Resisters, will help speed up progress. If you have EGFR mutant lung cancer and have not alredy joined the EGFR Resisters (completely for free), then you should absolutely do that. Here is the group’s facebook page: https://www.facebook.com/groups/EGFRResisters/ and here is their website: https://egfrcancer.org/.

We are now back in Oslo and hope the coming weeks will be rather uneventful.

Blue sky in Paris

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