We are now launching our second DIY guide. The new guide is relevant for lung cancer patients with the EGFR L858R mutation. Before I get to it, here is a brief update on week 115 in the war on lung cancer: Dyanne still has some stomach issues and she has this week also gotten a soar throat and lost her voice. Seems like a normal infection and should hopefully go away soon.
Then to our second DIY cancer vaccine guide. If you are not familiar with the DIY cancer vaccine project I am involved in, you can read our earlier blog post on it here: GOAL: CURE CANCER. METHOD: DO IT YOURSELF. The US website Gizmodo has also run a story that describeds the concept and project:
In short, the goal of the project is to empower cancer patients to take charge of their own treatment and treat themselves with science-based, promising, immunotherapeutic vaccines. The first guide we launched was aimed at certain subgroups of EGFR positive lung cancer patients. The new guide is aimed at EGFR positive lung cancer patients who have the EGFR L858R mutation. If you have this mutation, the guide can be relevant for you. What does the guide describe? In short, the guide takes patients through the following steps:
- Is the proposed treatment with peptides targeting the EGFR L858R mutation at all relevant for me?
- If so, which peptides are the best match for me?
- How to order the peptides?
- How to treat oneself with the peptides?
The EGFR L858R mutation is one of the most common mutations observed among EGFR positive lung cancer patients. Around 40% of EGFR positive patients have this specific mutation. Importantly, this mutation is a driver and it also appears that the immune system, at least in some patients, should be able to discover and attack cancerous cells that carry this mutation. Can vaccinations with peptides matching the EGFR L858R mutation help induce an immune response against cancer cells containing this mutation? There are some indications it may. However, the peptides are very far from proven to be effective. Is it safe to self-vaccinate with such peptides? Indications are that it seems quite safe. However, the peptides are very far from proven to be safe. Thus, anyone exploring self-vaccination with EGFR L858R peptides should be aware that efficacy is highly uncertain and that there will be risks and side effects, some of which may even be fatal. If you still think this can be interesting, here is the guide:
And if you are a skeptic of “do it yourself” medical treatment, then I strongly recommend to read this amazing article about how activists and patient advocates in London, more or less single-handedly, achieved a 40% drop in new HIV infections:
How did they do it? Well, they thought the public health care system in the UK was slow to implement a new and promising drug that prevent people from acquiring HIV. Patients took matters into their own hand and started importing, and self-administering, generic (i.e. copy-cat) medicines from India and Swaziland (!). Result? 40% reduction in new HIV cases in London.
This example from London and our DIY cancer vaccine guides are built on the same premise: it is we, the patients, who have the most skin in the game. It is we who suffer when treatments don’t work, or don’t even make it to our hospitals and clinics. It is not the doctors who suffers, it is not the politicians or hospital bosses. It is we, the patients. That calls, in my view, for radical and real empowerment of patients. Patients should not only have the right to choose which doctors and hospitals treat them. Patients should also, if they want to, largely be allowed to determine their own treatment. As patient empowerment is just an empty buzzword that politicians use to get elected, real patient empowerment is a remote prospect to achieve within the current health care system. The only option is then, in my opinion, DIY. Visionary health care politicians, doctors and scientists ought to embraze the concept. But probably most will not, and some backward people (and vested interests) may even try to oppose it. However, DIY medicine has come to stay and I predict that it will, in line with technological advances facilitating it, spread rapidly.
For patients interested in exploring DIY cancer vaccines, we have also set up a separate facebook where patients can ask for advice and share their own experiences with such vaccines:
Have a good Sunday!