Week 119 & 120: PET scan, deliberations and radiation battle plan

Written by Lars Haakon Soraas

Week 119 and 120 in the war on cancer have passed. As mentioned in our post from week 118, we are facing progression in the lungs and that has, naturally, been our main focus on the past two weeks. Here is an update:

  • Dyanne did a PET-CT scan on Tuesday last week. The results from the scan were not 100% straightforward to interpret, so we have spent quite some time to try to get clarity on what the results mean. In short, the summary seems to be this: the lesion they suspected were growing definitely looks very suspicious. Some other, smaller, lesions in the lungs also lighted up a little bit. However, not enough to be sure if they are growing cancer . There was one more spot that looked a bit suspicious and that our oncologist here wanted to check up on a bit further. Everywhere else (bones, lymph nodes, etc) looked good.
  • The plan is to use stereotactic radiation on the owe growing lesion in the lung. Dyanne had a preparatory CT scan for this purpose today. The battle plan is drawn on her belly (see picture). Radiation will take place next week, assuming all goes to plan.
  • The other lesions who were not possible to conclude on from the CT and PET scans will be tracked on the next scans to see if/how they develop.
  • Dyanne will go to Frankfurt for another vaccine injection later this week.
  • We are also investigating whether any changes or additions to the systemic treatment Dyanne is receiving are warranted.
  • Dyanne has had some fatigue and her appetite has not been so good lately. Apart from that she has been in pretty good shape.
  • Last week Dyanne also did an exam as part of training to become qualified to teach natural sciences in middle school. It went well.

We were saddened to learn last week that Heing passed away. Heing was 41 years old an lived in Canada. Heing’s husband, Shaneel, has been a part of our EGFR email group. He and Heing have tirelessly fought against the disease, but sadly it was not to be that they would grow old together. You can read the loving, beautiful and painful last blogpost written by Shaneel following his wife’s passing here: http://hanging-onto-hope.blogspot.no/2017/12/heing-1976-2017.html.

Finally, I was also touched by this story (in Norwegian) about a family who had to resort to illegally importing cannabis oil to treat their daughter who has a very rare disease: https://www.vg.no/nyheter/innenriks/helse-og-medisin/naa-faar-zarah-1-behandling-med-cannabisolje/a/24204833/. Imagine fighting a deadly disease and caring for a weak and helpless daughter. Then you find good research and science showing cannabis oil may help. And then you have to commit a crime to get hold of it. All I can say is that we have been there, and we may be there again. I believe every human being has a fundamental human right to attempt to pursue the preservation of their own lives. Sadly, many politicians and bureaucrats are oblivious to this and make lots of unnecessary rules and regulation that make our, and many other patients’, quest for life more difficult than it ought to be. Fuck them.

Radiation battle plan

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