Dead ends on every front: the vaccine stopped, a refusal with no reasons, and what I am looking for next

In short: This post is less of a guide and more of a journal entry. Over the last few weeks I received one piece of bad news after another: the personalized vaccine I was pursuing cannot go ahead, because not enough tissue was left from my biopsy. Through our association, I applied to a research program and was turned down in two sentences, with no explanation at all. And a simple message to other patients did not get past moderation in a single group. Here is what happened, what I am looking for now, and where we are with the RET Together registry.

The vaccine: it stopped exactly where I was afraid it would

If you read part two about personalized vaccines , you already know what I was afraid of. My tumor tissue was collected only once, at diagnosis, as two small cores. And my treatment has worked so well that there is no longer a tumor that can be safely biopsied.

I still sent what I had to the lab in Germany that was going to analyze the tumor for the vaccine. The answer came a few days ago: the tumor analysis could not be completed. The material left in the blocks was not enough.

I knew, on paper, that this could happen. Getting the news is something else. Months of research, letters, data requests and appointments came to a stop in a single line of a report. And I cannot help thinking that, at my first biopsy, one extra pass of the needle would have changed everything.

What I am looking for now: the next best thing

I have not given up. The road has just become narrower.

Officially, I do not have much. The clinical report of my molecular test at diagnosis only says which two genes are fused – KIF5B and RET. It does not say exactly where they join, and for a vaccine that is precisely what matters.

How I ended up with a sequence anyway

I had an idea: I asked the lab that did my sequencing (NGS) at diagnosis, Genekor, for the raw data – the files the sequencing machine produces, not just the few-page report that reaches the doctor. I received them.

They contained far more information than the report. The most precious piece: the exact junction, the precise spot where the two genes join, read directly from the DNA fragments of my own tumor. From the junction you can derive the protein sequence that exists nowhere in the healthy body – the ideal target for a vaccine.

There was nothing magic about it. Raw data can be analyzed on a computer with the same kinds of programs used by large labs and by the companies that officially make personalized vaccines: alignment to the reference genome, fusion detection, prediction of protein fragments. The only difference is that this time the analysis starts from data I already have, not from tissue that no longer exists.

I have made the same request to the lab in Germany, for the tests done there. I am waiting for the data.

Why a sequence is not yet a vaccine

I have to be honest here: having the sequence is only the first step. A peptide vaccine works only if the protein fragments can be “presented” to the immune system by HLA molecules – a kind of immune fingerprint that differs from person to person. That is why I had my HLA typing done, to know exactly which molecules I have.

Then comes the hardest part: binding. Even if the peptide is manufactured perfectly, it may not bind well enough to my HLA molecules, or the immune system may not react to it. Prediction programs give an estimate, not a guarantee. In my case, the estimates for one type of molecule came out weak, so I am now looking at longer peptides that target the immune system’s helper cells. It is another challenge I am trying to solve. And so on, step by step.

Who could build it

So the question has changed. I am no longer looking for “the best vaccine”, but for a center willing to build a vaccine from a sequence I already have, without running its own analysis on tissue that no longer exists. I have written to several centers, in Europe and beyond. Some replied quickly, others not at all. Nothing is certain yet.

It is a narrower option than the original one, and I will say it openly: it may not work out. But it is what can be done now, in my situation. When there is something concrete, I will write about it here.

The research program: turned down in two sentences

For this work – scientific literature, clinical trials, molecular data, the registry – I use artificial intelligence tools. They helped me reach many of the things you have read on this blog. So, through the OncoGuide Association, I applied to a program run by Anthropic, the company that develops the Claude assistant. The program is aimed at life sciences research organizations, it is in beta, and access is granted after a verification process.

We were asked three questions: what we would use the tool for, whether it was for internal use or for customers, and how many people would use it. We answered all of them openly: patient-led research on RET fusion cancers, strictly internal use, one person at first and possibly one or two collaborators. And we wrote explicitly that the tool would never be used to diagnose patients or make treatment decisions.

The answer, a few days later, was two sentences long: our organization “isn’t currently eligible for access”, and access will widen over time. No criteria, no reason, no way to appeal or to add anything.

I understand that a company has the right to choose who gets access to a beta program. That is not what hurts. What hurts is answering every question in good faith and getting a closed door in return, without even learning what should have been different. For a patient with a rare cancer, time is not an abstract resource. “Later” can mean “too late”.

A simple message that did not get past moderation

Before anything else, the RET Together registry needs patients to find out that it exists. So I tried the simplest thing possible: a short message in Facebook groups for cancer patients, saying what we want to do and how to get in touch with us.

Not one of them got past moderation. No explanation that holds up. I understand that moderators protect their groups from spam and from people selling miracle cures – it is hard and necessary work. It is just that, this time, the filter stopped exactly a message from a patient for other patients.

RET Together: the materials are ready for review

Here, at least, I have good news. The registry’s core materials are ready for review: the enrollment form, the consent form, the privacy policy and the minimum data set we would collect. They have already been through several rounds of internal checks, and the registry review comes next.

In the coming period I will publish them here on the site, so anyone can read and challenge them before any data is collected. The principle stays the one from the launch article : we build in public, and nothing is collected until everything has been checked.

Just an observation

Put together, the list looks something like this: tissue that no longer exists, a program that does not explain, groups that do not let the message through. Each one, taken on its own, has a reasonable explanation. Together, they say something about what life as a cancer patient looks like: not only is there little support, but there is an obstacle almost everywhere you turn.

I am not writing this to ask for anything, or to start a fight. Honestly, I do not think I have the energy right now to fight each of these battles. It is just an observation. If you recognize yourself in it, know that you are not alone.