Week 65: The value of openness and a great book

Written by Lars Haakon Soraas

Week 65 in the war on cancer has passed. Here are the highlights:

  • Dyanne has been in pretty good shape most of the week. A bit tired on some days, however. A recent blood test shows hemoglobin is a bit down, and maybe it is due to low iron. We will check and potentially supplement with some iron.
  • NRK (the “BBC of Norway”) made a story about us and the lack of funding for lung cancer research. We think it is very well written story and we are happy to, hopefully, have contributed a bit to increasing awareness of the limited research funding that is being allocated to lung cancer here in Norway (and most of the rest of the world). If you have not yet seen the story, it can be read here.

We generally believe that openness is a good thing. And being in the media, like the NRK story, often means being contacted by many people. One caregiver contacted us about sodium bicarbonate, and this promted me to properly read a paper I recently came across on the potential synergies between sodium bicarbonate and immunotherapy. The research is still ongoing, but it is definitely a valuable lead. So thank  you to the person who so selflessly offered his knowledge and experience on the use of this compound in lung cancer!

On a patient forum where we are active (inspire.com), another caregiver mentioned a book that sounded interesting. I will admit that I generally don’t read books these days, even if they are about cancer. However, this one seemed interesting, and I tasked my dad with reading it to find out if it indeed was as interesting as it looked. It turns out it actually was and I have now read a few chapters in the book myself. The book recounts the story of a young couple in California where the woman is diagnosed with a rare, and very lethal, form of cancer (synovial sarcoma). Even if she is being treated at Standford, the quickly abandon the “standard of care” as they realize it offers extremely poor chances of long term survival (close to zero). They then decide to take responsibility for their own fates and eventually decide to go “all in” on immunotherapy. They end up speaking to some of the same doctors we have consulted, and they face many of the same challenges we do: how to decide which treatments to go for, how to combine various treatments, and what to do when no doctor is willing to do what you think is the best course of action (they actually end up injecting things themselves). The good news is that she is still alive, with no signs of cancer. They have basically pulled off exactly what we are trying to do: beat a “terminal” cancer with a mix of persistence, science, immunotherapy and a “no holes barred, if necessary we’ll do it ourselves” attitude.

The book is a great inspiration and also maps out what you basically need to do if you want to try to survive “terminal” cancer today. I encourage everyone who is facing a “terminal” diagnosis to pick up a copy, both for inspiration and as a road map. If you want to try to survive, you now have footsteps to follow. The book is called “Curing cancer with immunotherapy” and is written by Rene and Edward Chee. Both are Stanford educated, she has a PhD in biology, and he is a computer scientist. The book can be bought on Amazon. The authors have also created a website with useful forums where patients can ask questions. They also have a facebook group.

Have a good Sunday!

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