I am excited today to publish the first result of a project I have been working on with some really smart, brave and creative people: A Do It Yourself guide for how to make and treat yourself with a simple cancer vaccine. But first, our update after week 110 in the war on lung cancer:
- Dyanne was in Frankfurt last week and received another injection of the personalized peptide vaccine, as well as a low dose of ipilimumab.
- As could be expected, she has been a bit tired and have had some stomach issues after the ipilimumab infusion. Hopefully these side effects go away soon.
Then to the project I have been working on and am happy to announce today: A Do It Yourself (DIY) guide for patients who want to make and treat themselves with a simple form of a cancer vaccine. This first guide is relevant for a subset of lung cancer patients who have EGFR mutations (like Dyanne). We hope to soon be able to expand the guide to cover more patients.
Before I describe the guide itself, some background is necessary. As people who read this blog will know: I have been frustrated by how lung cancer patients are just given up by our health care system. It is not only that the system has a terrible track record: the five-year survival rate of stage 4 lung cancer has been around 2% for decades. Millions and millions of people have died. 1.6 million will die this year of lung cancer. 4000 people every day. What makes me really angry is that the system is not even trying to save these patients. These people are basically given up on the day they are diagnosed. Left to die. Moreover, doctors are discouraged from trying to save the lives of these patients. As I blogged about last week, the few doctors who dare to try to save the lives of “terminally” ill cancer patients are quickly at the receiving end of a witch hunt organized by other doctors as well as government regulators.
So, what are patients to do in such circumstances? You are told you have an “incurable” disease, you realize the health care system will not even try to save your life, and you realize that most doctors turn their back on you when you ask them to help. What do you do? The answer is: you do it yourself. You study hard (using PubMed, Google Scholar and sci-hub.cc), you connect with like minded patients and you figure out what treatments give you the best odds of long term survival, and then you find ways to implement them – with or without the help of doctors. It is “do it yourself” medicine. It is patient driven research. It is “we are the ones who have skin in this game, and we now take charge over our own destinies.”
This is what we have done in the past two years. And now we want to help show other patients what they can do to help themselves. Empower patients to take charge of their own treatments. Not asking or begging anyone to help them, but reading up on the science, creating their own treatment and then treating themselves. Patient empowerment 2.0.
The guide we are launching today describes, step by step, how one can make and vaccinate oneself with an EGFR T790M peptide. The peptide may in some patients be able to induce an immune response against cells which have the EGFR T790M mutation. The peptide is most suitable for patients who have the EGFR T790M mutation and who have a specific HLA type called A*02:01. The guide describes who the peptide can be relevant for. We estimate it will take around 1-3 months to go through the whole process, and that it will cost around €1000. The treatment is certainly experimental, and definitely not risk-free. And no one even knows if it will have a positive effect on patients who try it. What we know, however, that the process is possible to go through (one of the people behind the guide has helped a family member make and treat himself with a very similar peptide). And we think the peptide is promising enough to use it ourselves: Dyanne is already receiving it as part of the treatment she is getting in Germany.
Thus, without further ado, here is the guide:
We have created a facebook group for people who would like to investigate if this may be something for them: https://www.facebook.com/groups/DIYCancerVaccines/. Join this group if you would like to explore either this, or other, “do it yourself” cancer vaccines.
We hope to translate the guide to Spanish and Chinese and maybe also other languages. And we hope to expand the guide (or make other similar guides) to also cover other peptides which can be relevant for other patient populations. If you would like to help in this endeavour, either by translating the guide, expanding it, or in other ways, then please join the above facebook group or email me on .
Finally, it is important to highlight that this guide is not made by me alone. The guide is the result of global team work of a small, but dedicated group of patient warriors and scientist:
- Jo Monsen, a unique caregiver for his brother-in-law who, like Dyanne, is battling stage IV, EGFR positive, lung cancer.
- Josiah Zayner, a US biohacker who is introduced the world to “DIY Bacterial Gene Engineering CRISPR Kit”. Here is his Wikipedia page.
- Anne Sofie Boldsen, a fellow patient warrior who is battling her own EGFR mutant lung cancer. Conveniently, Anne Sofie is also medical doctor.
- A bioinformatician and researcher of personalized cancer vaccines who, at this point in time, would like to remain anonymous.
We have also gotten input and help from numerous other people in the process. Thanks to everyone who has contributed. If you would like to join our small band of revolutionary patient warriors and scientists in our quest to cure cancer, then do join our journey. Do not expect it will be easy. Curing cancer definitely won’t be simple. And patient empowerment scares the hell out of many people (I have already been kicked out of two facebook groups due to this guide). But when passionate people with their own lives on the line join together, incredible things can happen. We don’t know where the journey will lead us, but we know the goal: cure cancer. With science, persistence, creativity and collaboration, I think we can do it.