Week 109: Time for champagne (and a little bit of a rant...)

Written by Lars Haakon Soraas

Week 109 in the war on cancer has passed. It has been good. Very good. Here are highlights:

  • We got scan results from both MR (brain) and CT (lungs) scans. Both were good. Everything is stable, no new lesions, nothing seems to be growing. For a lung cancer patient (and their family), this is pretty much as good news as one can get. Thus: we were exhilarated and even had some champagne (at least me…).
  • Dyanne has been in pretty good shape. However, the last few days she has been fatigued. We don’t know the reason, but hope it will go over soon.

Someone has already asked the following: Do these scan results mean that the treatment Dyanne is getting in Germany is working? The short answer is “No”. As Dyanne is doing several treatments simultaneously, we cannot know which one(s) are working and which one(s) are not. It may be that it is “only” the “standard” treatment with osimertinib that is working. Or maybe the vaccine and immunotherapy in Germany is helping. Or maybe something else. Or maybe a combination. The fact is that we cannot know. However, even if it could be useful to know what is working, for us the most important is that something is working.

There is lots of more things I have wanted to blog about recently. As time is short, I will cover some of the points in with some short bullet points:

  • My sister has started a small webshop where she sells beanies and some jewellery. A share of the profit goes to lung cancer research. Nice stuff and nice purpose. Run and buy: https://foxandowl.no/.
  • For anyone with cancer, a massive trial that will test a personalized vaccine concept that is very similar to what Dyanne is receivin in Germany, will start soon. The trial is by BioNTech and Roche. Some patients will “only” get a personalized vaccine, and some will get such a vaccine in combination with atezolizumab, another immunotherapy drug (which is very similar to pembrolizumab and nivolumab). The trial will recruit patients with many types of tumors: lung cancer, colon cancer, triple negative breast cancer, etc. And the trial will recruit at many locations, both in the US/Canada and in Europe (Spain, Netherlands, London, Germany, Belgium and Sweden). There are, as always, a number of inclusion and exclusion criteria. And the trial only seems to start recruiting in December this year. But apart from that, it looks like a great trial. Here are more details: A Study of RO7198457 (Personalized Cancer Vaccine [PCV]) as a Single Agent and in Combination With Atezolizumab in Participants With Locally Advanced or Metastatic Tumors.
  • Some great progress is being made in our understanding of the causes and origins (or: etiology) of cancer. For anyone who wants to understand lung cancer induced by smoking actually happens, here is a great paper: Chronic Cigarette Smoke-Induced Epigenomic Changes Precede Sensitization of Bronchial Epithelial Cells to Single-Step Transformation by KRAS Mutations. If you think that researchers/doctors actually knew how smoking causes lung cancer, well, then you are mistaken. But they are gradually starting to understand it now. The hope is that the same techniques and concepts that are being used to figure out how smoking causes lung cancer also now can be applied to figure out why never-smokers get lung cancer. Ultimately, to prevent this disease, one needs to understand why it happens. With knowledge about that, one will be able to prevent and treat the disease in a much better way.

Then there is another topic that has been annoying me lately. More on this in the section below.

The persecution of doctors

Lung cancer patients face many problems. One of them is this: if you are a “terminal” patient, you are in many ways an “untouchable” for most doctors. Most doctors prefer not to get involved in the treatment of such patients and would rather leave it to the “professionals”, i.e. oncologists. Most oncologists, however, work in large institutions where they focus on following guidelines and not deviate too much from the “standard of care”. They are, in fact, heavily incentivized to only deliver the standard of care and not do anything else. For lung cancer patients, the “standard of care” has for decades given you nothing but poor quality of life followed by certain death. Not a particularly attractive offering. Nevertheless, this has been what has been on offer.

Doctors who have tried to deviated from the “standard of care” often face trouble when/if the patient dies (which most “terminal” patients will do no matter how you try to treat them). Your colleagues will start asking questions and, even worse, some government agency regulating health care will start looking into what you have done. We know several cases where a doctor has tried to help save the life of a “terminal” cancer patient, and then gotten into trouble for not having followed the standard of care. The trouble will come your way even if the patient is actually the one asking for the treatment, is fully informed of the risks, and the treatment has a sound rationale in science. Doctors can be punished even if the treatment actually seems to help the patient stay alive. The people causing the trouble is usually not the patients or their family. It is usually rival, jealous, mediocre, doctors who complain to the authorities. A good example is a Norwegian doctor called Dr Espen Huldt-Nystrøm, an anesthesiologist at a hospital in Southern Norway. When he found out that some of his colleagues were trying to help a stage IV lung cancer patient with some treatment he did not like, he complained to the ethics committee of the local hospital. That the treatment the patient was receiving was both science based, seemed to work and that the patient was the one asking for it, did not deter Dr Huldt-Nystrøm. Thanks to Dr Huldt-Nystrøm, the woman soon was no longer able to receive the treatment. And, predictably, she died. That Dr Huldt-Nystrøm seems to have informed himself about the treatment given to the patient from a factually incorrect Wikipedia article, does not seem to have bothered anyone. Dr Huldt-Nystrøm never seemed to be at the vanguard of medicine anyway: he has exactly 0 – zero – articles on PubMed with his name. His greatest contribution to medicine will likely be his efforts to remove from circulation innovative doctors trying to save the lives of terminal patients. There are only three words for a guy like this: immoral, stupid prick.  Of course, the same can be said about the members of the ethics committee (who defines their “ethics” anyway?), the people at the Norwegian Board of Health Supervision, who investigated one of the involved doctors and concluded her attempts to save the patient’s life should be criticized.  If you want, you can read more about the case (in Norwegian) here: http://www.agderposten.no/nyheter/behandlet-kreftpasient-med-bakepulver-1.1488169.

Of course, all these imbeciles believe they do good when they report their colleagues to the authorities. And the authorities believe they do good when they criticize doctors who step out of line and try to save the lives of terminally ill patients. The fact is, however, that their actions, as well as the rules and regulations they follow, are based on flawed statistics (for proof see here) and flawed ethics (if you think it is ethical to stop a treatment which seems to work and that a desperate and “terminal” patient is begging for, you better get your head checked).

Why am I getting so worked up about this now? Because the imbeciles are now after a doctor we consult with. The doctor in question is Professor Justin Stebbing in London. He is “only” a professor at Imperial College. And he has authored more than 500 articles in scientific journals, many of them in leading journals like The Lancet and New England Journal of Medicine. However, that he has become popular among patients by treating consenting, “terminal”, adults with the latest, science-based, treatments even if they are not yet part of the official “standards”, is obviously too much for some people. A rival doctor has complained and after an “investigation”, he has been kicked out of the place he was practicing: The LOC (“Leaders in Oncology Care”). You can read more about the case here. The good news is that Stebbing has some patients who are both smart and wealthy. They will not let this pass without making a fuss. A campaign is on its way to have his name cleared. In the mean time, I suggest the LOC should rename themselves as “Managers in Oncology Care”. Kicking out a visionary doctor is not something you do if you want to brand yourself as “Leader”. If you want to stick with the guidelines, you should rather call yourself a “manager”. And you should focus on replacing highly paid doctors with robots who anyway are better at following guidelines than people.

The sad thing about cases like the the one in Southern Norway and the one involving Stebbing is this: these cases send a crystal clear message to any doctor who would like to try to save my wife’s life. The message is this: if you touch her and do anything else than the “standard treatment”, then we will come after you. You risk loosing your license, your job, your career, and maybe also your family and your house. This is part of the reason we have had to travel to Spain, UK and Germany to get treatment for Dyanne. The type of doctor we want to be treated by are virtually an extinct species in Norway. And some people are working hard to eradicate them also in other countries.

How bad is the problem? It is bad. Very bad. To give an example: we went to Aleris, one of the only private oncology clinics in Norway. We asked them if Dyanne could get immunotherapy treatment there. The response of their oncologist? It was something like this: “I think the treatment you want is good and I would try the same if I were you. However, we are very scared of jealous colleagues at the public hospital here in Oslo, and we are scared of the media and we are scared of the Norwegian Board of Health Supervision. They can shut down our whole practice if we do something they don’t like. So for this reason, we cannot give you this treatment. But I think it could be a good treatment for you.” Not a very nice message to get when you are 30 and recently have been diagnosed with “terminal” cancer. The fact is, that I understand Aleris. Their policy sucks, but they are only responding to incentives put in place by our government and leading bureaucrats. They are not to blame. The people putting those incentives in place are the ones who deserve the blame (and yes… it is our sad health minister, Mr Bent Høie, who is the one who could do something with this – but he neither seems to have the will or competence to do it).

What to do with this? Sadly, reforming the system seems hopeless. There is too much bad incentives, vested interests and bad bureaucrats. And too little intelligent leadership. Thus, I have come to conclude that the best way forward is to empower patients to fix their own diseases. Trying to fix the system is probably a waste of time. And waiting for the system to save you is likely not gonna be a good idea. Rather, give patients the tools and resources to fix themselves, and they are bound outperform the likes of Dr Huldt-Nystrøm. Call it “do it yourself medicine”. I hope to write more about that soon.

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