Standard of care, personalized care, personalized medicine: what I've understood so far

In short: I’m the patient behind this blog. Five months after diagnosis, my treatment is going well – and that’s exactly why I found myself asking a question I didn’t expect: what do you do with good news, when you know it won’t last forever? This article is about what I’ve understood, from the inside, about the difference between “standard treatment” and personalized medicine – and about the options I’m exploring now, while I have a good window.

Where I am now

I have stage IV lung cancer, with a genetic particularity called a RET fusion. Since February 2026 I’ve been taking a targeted pill – an inhibitor from the TKI class (in my case, selpercatinib) – and, after the first few months, the response has been very good. (You can read how it all began here .)

The main tumor in my lung has almost disappeared in terms of activity, the lesion on my spine – treated early on with targeted radiotherapy – has quieted down, and one of the metastases is no longer visible. One residual area has remained – a lymph node that has shrunk a lot, but not completely.

It’s not a cure. In stage IV we don’t say “I won.” We say the disease is, for now, under control. And this is where the part I want to write about begins.

“Standard of care”: the treatment that works now

There’s a term I heard a lot after diagnosis: standard of care. It means, simply put, the treatment officially recommended for your type of cancer, the proven and approved one, the one any oncologist will offer you.

For me, the targeted pill is standard of care. And it’s a good standard: for RET fusions, these pills have completely changed the prognosis compared to classical chemotherapy.

But standard of care comes with a truth that’s better understood early than late.

In advanced cancer, at best, the standard treatment is something that works now. Not for life. In the long run – and often sooner than we’d like – the cancer finds a way around the pill. What’s called resistance appears, and after it, progression. The question isn’t whether, but when.

And progression can come in several forms: gentler, more aggressive, or much more aggressive. There’s no way to know in advance which one it will be.

This isn’t pessimism. It’s just the correct map of the terrain. And precisely because I see it this way, I try to understand what I might do with the time I have now. I don’t have any certainty – I ask myself questions and see where they lead.

Personalized care, personalized medicine: they’re not the same thing

Here I needed some time to understand a few nuances that, at first, got jumbled together in my head.

Standard of care is the protocol: what is normally done for your cancer.

Personalized care is something else. It means the way you, together with your doctor, understand your exact situation – your risks, your values, what you’re willing to try – and make the decisions together, not on autopilot. It’s more an attitude than a technology.

Personalized medicine is the actual technology: treatments chosen based on the exact biology of your tumor. The molecular tests that find the mutation, the targeted pill that hits exactly that mutation, and – increasingly – therapies built almost to your measure: genetic, molecular, immunological.

In recent years, this field has evolved enormously. Ten years ago, a diagnosis like mine meant, broadly, chemotherapy for everyone. Today, the fact that my tumor has a certain genetic fusion gives me a pill that targets exactly that defect. That’s personalized medicine – and it has already given me months – potentially, years – of good life.

The important part: personalized medicine doesn’t stop at the pill I take now.

Why it matters, especially in stage IV

I’m not writing this to give advice – I’m in no position to lecture anyone. I’m writing it because I’m sharing it with you, the way I would have wished someone had shared it with me when I needed it.

Every patient is different. For many people, the best choice is to trust their doctor and follow the standard treatment, without burdening their mind with everything that might come next. It’s a perfectly legitimate choice, and sometimes the most peaceful one.

For me, though, it mattered to try to understand the risks and to be an active part in the decisions. Not out of distrust in doctors, but because I feel that, in stage IV, time matters and I want to know the terrain as well as I can. I suspect – without being able to prove it – that, for some of us, understanding early what might come and what questions to ask really does matter.

The window

That moment of breathing room is exactly what I have now. In the literature it’s called the “window of good response” – the period during which the treatment works deeply and the disease is at its lowest level.

It’s tempting to settle quietly into this window and just be glad it’s working. And, in a way, that’s exactly what I’m doing: I’m not changing anything that works. The pill is too good to disturb.

And, at the same time, I look from the present toward the future – without today’s certainty, because the future doesn’t have it – and I try to understand: could I use this window to push progression as far away as possible, or even to target the residual disease that’s left?

The logic is simple. The fewest cancer cells I will ever have are the ones I have now, while the pill keeps the disease on the ground. If there’s any chance to hit what’s left – or to delay the moment when the cancer learns to resist – now is the moment with the best cards in hand, not later.

So my strategy, for now, has two layers: I keep the standard treatment that works, and at the same time I investigate, without rushing, personalized medicine options that could either extend the window or directly attack the residual disease.

The hard part: on the frontier you’re more alone

And here I reach the most delicate part, which I want to say carefully.

As long as you’re on standard of care, you’re not alone. There are protocols, guidelines, doctors who know them, a well-trodden path. The oncologists do exactly what they should, and they do it well.

But the moment you start looking beyond the standard – toward experimental treatments, toward cutting-edge personalized medicine – you enter terrain where the map is no longer drawn. And there, honestly, you’re more alone.

Not because anyone is making a mistake, but because these options are so new that, across the entire world, very few people have real experience with them. Especially for a rare cancer like mine, where the data is scarce.

This isn’t a criticism aimed at anyone. It’s simply the nature of the frontier: advanced personalized medicine is often available, but it’s still expensive, still fragmented, and still unclear to navigate. There isn’t, yet, a “frontier doctor” you can make an appointment with who will tell you exactly what to do. You build this piece by piece, asking many people and reading enormously.

AI as a compass on terrain with little data

This is where my main tool comes in: artificial intelligence.

Because my type of cancer is rare, there isn’t a stack of studies telling me “here’s what to do.” So I use AI to do something else: to learn from diagnoses that, biologically, resemble mine.

There are other types of lung cancer – with other genetic defects, such as EGFR or ALK – that have been studied far more, because they’re more common. Their mechanisms have similarities with mine. I use AI to gather and read, systematically, what has been tried there: which personalized therapies worked, how they worked, and – just as important – why others didn’t.

The lessons from a cancer that’s a “cousin” of mine are, often, the best guide I have. It’s not magic and it doesn’t replace the doctor. But it gives me a map where otherwise I’d have nothing but fog.

A concrete example: cancer vaccines

The best example of “personalized medicine that I’m investigating” is therapeutic cancer vaccines. I want to use them to show how I think, because here you can see everything: the promise, the limits, and the loneliness of the frontier.

First, what they are. A therapeutic vaccine doesn’t protect you from cancer (it’s not like the flu vaccine). It tries to teach your immune system to recognize cancer cells as something foreign and to attack them. The idea is old and seductive; the hard part has always been showing the immune system exactly what to attack.

There are several types, and the difference between them matters:

• “Off-the-shelf” vaccines: ready-made, targeting signs common to many patients. Advantage: cheap, available immediately. Disadvantage: they’re not tailored to your tumor.
• Dendritic cell vaccines: “trainer” cells are taken from your blood, taught in the lab to recognize the tumor, then returned to the body.
• Personalized vaccines (mRNA or peptide): your tumor is sequenced, its unique mutations are searched for (called neoantigens – signs that appear only on cancer cells) and a vaccine is built to your measure.

Here comes the first hard lesson about my case. Classic personalized vaccines rely on the tumor’s number of mutations: the more mutations, the more “targets.” But my cancer has few mutations (in technical terms, low TMB). It’s an immunologically “cold” cancer – hard for the immune system to see. For such a cancer, the standard personalized-vaccine approach has little material to work with.

And yet, there is a path that, for me, is almost perfect.

The ideal vaccine for my diagnosis

My tumor has a defect that defines it: a fusion between two genes (in my case, KIF5B and RET). The exact place where the two genes “stick together” – the junction – creates a sequence that exists nowhere in the healthy body. It’s a unique sign, present in every cancer cell, exactly the kind of target an ordinary vaccine would miss, but which for me could be the tumor’s Achilles’ heel.

The ideal vaccine for me would therefore be one built precisely around this junction. And here comes the good news: its sequence can be read directly from the genetic tests I already have – I don’t necessarily need a new biopsy to find it.

What’s more, in 2025 an academic lab published exactly the protein fragments corresponding to this RET junction and showed that the immune system can recognize them – including in people with my type of HLA (a kind of immune “fingerprint” that decides what can be presented to the defense system). For my case, the pieces fit surprisingly well.

What would such a vaccine ideally look like? From what I’ve understood while reading, it would combine:

• the RET junction peptides – the main, sure target;
• a few additional neoantigens from my tumor, as a safety net;
• possibly, targets that anticipate tomorrow’s resistance mutations;
• and a strong adjuvant – an “amplifier” that wakes up the immune system.

Important: for me, the vaccine should be given alongside the targeted pill, not instead of it. And not combined with classic checkpoint immunotherapy – because my tumor has a particularity (an amplification of the MDM2 gene) that makes that type of immunotherapy risky in my case. Details like these are exactly why “personalized” truly means personalized.

What worked and what didn’t in similar diagnoses

Here honesty is needed, because hope without data is just wishing.

The sober news: there isn’t, yet, a single patient with a RET fusion treated with such a vaccine. Zero direct human data. All I have are analogies and a study in mice.

But the analogies are encouraging. In lung cancer with an ALK fusion – a close “cousin” of my case – a vaccine built on the same logic, given together with the targeted pill, eradicated tumors and prevented brain metastases in mice. It’s only an animal model, but the mechanism is exactly the one I would use too.

The news that calls for caution: in lung cancer, “classic” personalized vaccines, based on many mutations, have disappointed in controlled trials. They proved safe and triggered an immune response, but didn’t clearly extend life. That’s precisely why, for me, the stake isn’t a generic vaccine, but one built on that unique junction.

So, what am I doing now?

The answer might surprise you: for now, I’m not starting any vaccine. And, from what I understand now, this seems the most correct choice – though I keep it open, not set in stone.

The pill is working too well to disturb it, and the best programs have real barriers: some require a biopsy from fresh tissue (which, in a deep response, I have no way to obtain), others require measurable disease which, fortunately, I don’t have now. And almost all of them are still expensive – a complete personalized vaccine can reach around 80,000 euros, with no guarantees.

But “I’m not starting anything now” doesn’t mean I’m standing still. What I’m doing, concretely: I do my routine monitoring, I take the pill we know works, and I contact the labs and companies that could build the kind of vaccine I’d need – or similar ones. In parallel, I try to understand from the experiences of other patients with diagnoses close to mine what worked and what didn’t.

There’s another reason I’m starting to look now: a personalized vaccine usually takes between 6 and 12 months to be created. It’s not something you can decide “when needed,” overnight. That’s precisely why I try, actively, to understand the options while I have calm – so that, if the moment for a decision comes, it will be as informed as possible, one I can be at peace with afterward.

This is what I call “keeping the target warm”: I prepare the ground and wait for two moments that could reopen the door – the next follow-up scan, or a possible progression that would bring a lesion from which tissue could be taken.

Thoughts, not conclusions

I don’t have a nice conclusion to put here, and I think that’s okay.

Everything I’ve written are things I’ve found so far and that I’m sharing with you. Some might turn out to be wrong later – that’s how it is on terrain that moves fast. I’m not giving advice; I’m rather thinking out loud.

Where I actually am: I have a standard treatment that works well, and which I value. And I have, in parallel, a map I’m trying to draw for myself – with the help of AI, of reading, and of many generous people – toward personalized medicine options that could, one day, mean more than “control.” Maybe. I don’t know yet.

Maybe none of the options I’m investigating will reach me. Maybe one will. For now I keep asking, reading, and seeing where it leads.

A resource I found useful

Along this road I came across a place that struck me as genuinely valuable, and I want to leave it here for you.

The Sijbrandij Foundation – created by Sid Sijbrandij, the co-founder of GitLab, after his own experience with cancer – has a free program for patients, called FCCT (Future of Cancer Care Today). It doesn’t replace your doctor and doesn’t make decisions for you. What it does is help you navigate the options beyond the standard treatment: they have a clean list of suppliers (from tissue preservation and molecular profiling, to vaccines and cell therapies) and – the part I found most useful – they offer you a free 30-minute conversation with someone from their team, who can guide you or put you in touch with people they collaborate with.

For someone who, like me, sometimes feels alone on this frontier, it’s exactly the kind of helping hand that matters.

Let’s talk

If you’re reading this from a place similar to mine – a related diagnosis, maybe the same curiosity about vaccines or other personalized therapies – I’d love to hear from you.

If you’ve been through something similar and want to share your experience with me, write to me . Maybe we’ll learn from each other – and maybe we’ll make the road a little easier for those who come after us.