‘From the shocking diagnosis to the symptom diary: this is how I managed to get the illness under control’

It has been a long journey that has led me, in a sense, to become an ‘expert patient’. I had no intention of passively enduring the treatment, but rather of understanding it; I didn’t want a side effect to be an inescapable fate to be endured in silence, but rather a clinical finding to be monitored and for which I could receive answers. As we know, the patient information leaflet doesn’t provide personalised answers.

To do this, I looked into and tried out some practical tools. The first, and perhaps the most important, was the ‘symptom diary’.

At the start of treatment, when faced with a sudden gastrointestinal problem, that severe bone pain or that unusual tiredness which doctors call ‘fatigue’, the temptation is usually either to panic or, conversely, to play it down; a sort of ‘fight or flight’ response.

However, making a note in a notebook of when that particular symptom occurs, its intensity and its duration can transform even a vague, painful sensation into an objective fact.

This approach radically changes the nature of a haematology consultation. You need to be very specific, because it’s one thing to turn up at the clinic and say, in general terms: ‘Doctor, I often feel tired’.

It is quite another matter to say: “Over the last three weeks, I have felt extremely exhausted every day, to the point where I have had to stop what I was doing”.

This level of accuracy enables the haematologist to tailor treatment, suggest management strategies and, above all, assess alternative treatment options.

Another essential tool is preparing for the appointment in writing.

Arriving at the doctor’s surgery with a sheet of notes or a note on your mobile phone containing three or four relevant questions – to which you expect a proper answer – breaks down the psychological sense of subservience in the presence of the white coat.

A consultation is not an exam to be sat with bated breath, but a strategic dialogue between two experts: the doctor, who understands the condition and the scientific evidence, and the patient, who is the only true expert on their own body and on how that medicine affects their daily life.

Today, my personal journey has reached a milestone that once seemed impossible to me: I am on treatment-free remission. This outcome, known in clinical terms as TFR (Treatment-Free Remission), is neither a miracle nor a goal achieved by chance. It is the result of years of strict adherence to treatment, constant molecular monitoring and a journey that has also involved experimentation. Innovation and scientific research have given me access to three different lines of treatment, offering me new treatment options and the chance to get this far. But there is another aspect that I consider equally important: having learnt to listen to my body, to recognise its signals and to play an increasingly informed role in my own treatment journey. Today, this milestone represents for me not only a clinical achievement, but also the value of research, trust and collaboration between the patient and the medical team.

Living without daily treatment is an extraordinary freedom, but it brings with it a new form of responsibility and a different approach to regular check-ups, which remain essential and must be strictly adhered to. Even at this stage, empowerment proves to be crucial: we are no longer simply patients taking a medicine, but active participants in maintaining our own deep molecular response.

To be honest, that underlying anxiety never really goes away completely: it resurfaces every time I have a blood test. But knowing that scientific research is constantly providing us with new treatments helps to put that fear into perspective.

I believe this is precisely what makes us truly empowered patients: the power not to be passive victims of CML, but active and informed participants in our own care, capable of engaging in dialogue about future treatment options.

Today, as a member and chair of the Bianco Airone A.p.s. association, I am able to pass on this valuable experience to those who are experiencing that initial sense of bewilderment, that agonising uncertainty that follows the results of the first medical report. Furthermore, being part of an association allows us to weave our individual stories together with those of hundreds of other patients.

In this spirit of sharing, everyday tips for managing a side effect, as well as practical tools for engaging in dialogue with doctors, become part of our shared knowledge. And so we can transform an individual’s vulnerability into an extraordinary collective strength.

* Chair of the Bianco Airone Aps Association