Weeks 149-151: Summer update

Written by Lars Haakon Soraas

Weeks 149, 150 and 151 in the war on lung cancer have passed. The lack of updates is due to the holidays. Here is a, belated, update:

  • Dyanne got another infusion of low dose nivolumab. This gave quite a bit of side effects (nausea, diarrhea…) that lasted around a week.
  • Apart from this, Dyanne has been in good shape.
  • What are we planning to do about the growing lesion in the lung that was observed on the latest CT scan? In addition to the increased intensity of nivolumab, we will also do another liquid biopsy in the coming week. We will then see results, and also how the tumor marker CEA is developing, and then see if any further actions are required before the next scan (which is planned for in August).
  • One treatment we are considering is low dose inhaled interleukin 2 (IL2). IL2 is an old form of immunotherapy and in a small study it was tested if this could be inhaled in low dose. The results were quite promising. As the progression in Dyanne’s case seems limited to the lungs, and IL2 may be synergistic with the other immunitherapy treatment she is on, I am thinking low dose inhaled IL2 could be an interesting treatment option. However, no decisions about starting it has yet been made.

As I have reported the passing of several patients in the past, I this time wanted to mention a patient we know who seems to have done very well. The patient is young (40 something) and has EGFR mutant lung cancer, but with a type of EGFR mutation that is quite rare (and for which the common EGFR targeted therapies don’t work). The patient has done extensive research and is targeting the cancer with some 20 drugs and supplements, in addition to exercise and a tailored diet. The results of the latest scan were very good. Very, very good. Needless to say, we know that with cancer, one should not pop the champagne too early. It is impossible to know how long the good situation will last. Hopefully for decades. But maybe not. In any case, it is very encouraging to see other patients doing innovative treatments. And, as most oncologists are not up for helping out with innovative, off-label, combination treatments, the patient has mostly gone down the “do it yourself” route.

Finally, it seems like I am getting a bit involved in a research project that has as an aim to develop immunotherapy tailored for EGFR mutant lung cancer. The project is led by a leading immunologist. I will share more details later. However, for now, if you have EGFR mutant lung cancer, are able to donate some blood, and would like to help out, then please do contact me on or on facebook.

Hope everyone is having a great summer!

Naomi and Dyanne biking, Båstad, Sweden

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