Here is our update from weeks 102 and 103 in the war on cancer:
- Dyanne has been in Germany and gotten new vaccine injections. New this time was a peptide to match a mutation she has in the EGFR gene. See more on this below.
- Dyanne has been in pretty good shape the last couple of weeks. After she stopped tetrathiomolybdate, the stomach issues have more or less gone away.
As mentioned above, Dyanne was again in Germany last week. As everyone will know, she is there getting a personalized peptide vaccine. In the last couple of months, she has been getting 4 cocktails each with a handful of peptides which match mutations found in her cancer. New this time, however, was that she also received a peptide to match a mutation she has in the EGFR gene. The mutation in question is the T790M mutation. This is a mutation which frequently emerges at the time of resistance for patients who have been treated with first line EGFR inhibitors. Around 50% of EGFR positive lung cancer patients ultimately develop this resistance mutation.
Due to the large number of patients who have this specific mutation, it is an attractive treatment target. Tagrisso, a drug Dyanne currently is taking, targets this mutation. However, it can be beneficial to target this mutation not only with Tagrisso, but also with Dyanne’s immune system. Thus, when we came across a scientific article by a research group in Japan about a peptide which can help trigger the immune system to attack cells with this mutation, we got excited. Digging some more into this, we decided to get it produced and this has happend in the last couple of months. Last week the peptide was ready and Dyanne received the first injection on Thursday this week. She may be the very first human in the world receiving this exact peptide. Whether it will have any effect is impossible to say. We believe it should be very safe (even if you can never get any guarantees), and we will monitor and investigate in a couple of months’ time whether there are any signs Dyanne’s immune system is triggered by this new peptide.
There is a debate in Norway currently about the long time it often takes to get new medicines approved for use in public hospitals. In some cases it has taken more than a year to get a potentially life saving drug out to patients who are in desperate need. The sad truth is that many patients simply do not have time to wait. Rather than sitting around and waiting for other people to cure our disease, we see that many patients and their caregivers do like us: they increasingly take things into their own hands. Instead of giving up on life, patients read up on the latest scientific articles and device their own cutting edge cancer treatments. Even if we have great help from some of the leading doctors in the world, the use of this new EGFR T790M peptide is an illustration of this. We found the article, we discussed with the team in Germany and they agreed that this could be worth a try. No one knows if it will work, and there are always risks. However, after reading up on it, we believe the potential benefits outweigh the risks. Others may weigh the potential risks and benefits differently.
The article that spurred us to try out this peptide is this one: A peptide antigen derived from EGFR T790M is immunogenic in non-small cell lung cancer. The peptide Dyanne now is getting is a short peptide consisting of the following 9 amino acids: IMQLMPFGC. If you or someone you know have EGFR positive NSCLC, it may be worth looking into this. Producing such a peptide only costs a few hundred euros and can be done by many companies in the world. If you want to explore this further and have questions, feel free to contact me (). We will be open about our experience and happy to share with any other patients and caregivers.
As people become more and more educated, and as more and more medical and scientific information can be found online, we may be at the beginnig of the age of “do it yourself” medicine. Even if there are risks and pitfalls, I do believe it has tremendous potential. Consider the following for a second: there may perhaps be somewhere between 1000 and 10 000 doctors and researchers in the world working on trying to beat EGFR positive lung cancer. The number of EGFR positive patients? Probably around 500 000. These patients are basically told today: you have an incurable disease and you can expect to live another 2-3 years. Many patients may accept their fate, and some may not have the background or skills needed to research their own disease. But many undoubtedly have both the will, the skills and exceptional incentives to become experts on their own disease. Many can, in cooperation with researchers and doctors, probably also help contribute to driving the field forward. If only a small fraction of EGFR positive patients and their caregivers contribute, the number of people working to beat this disease may multiply manyfold. And the more smart people work on beating this disease, the sooner we will find out how to cure it or, at least, how to make it in to a chronic disease.
With that, have a good Sunday night!