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On top of the White to slap the tumor

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On top of the White to slap the tumor

First the tiredness, “different from the usual one”. Abnormal, continuous, debilitating, exhausting. Then the shortness of breath, the fatigue in climbing stairs and walking. And to say that Francesca Masi, a Tuscan psychologist born in 1975, has never suffered from anything serious until then. What’s more: she is a sportswoman, a trekking enthusiast, always in shape, always on the move. For this, the symptoms of 2015 seem so strange: nothing serious, say the doctors, stress. «But given the work I do, I know stress well – she says – and I know that at that moment I was not stressed at all. On the contrary, I felt very lucid ». The fact is that the fatigue does not go away. And then other, more in-depth analyzes, which reveal an enlarged spleen and a low number of platelets, too low to be solely attributable to stress.

The true diagnosis arrived only the following year, in a specialized center, the Crimm of the Careggi Hospital in Florence. And it is one of the merciless ones, with “a very sweet name, sweeter than a candy”, to use Pirandello’s words: myelofibrosis, it’s called. “I reacted to the diagnosis with extreme clarity – continues Francesca Masi, who at that moment has a five-year-old son – and I told myself that I would do everything possible to save myself: I should have maintained a very high concentration in all phases of my path of care “.

Two avenues are proposed to Francesca Masi: an experimental therapy or a bone marrow transplant. There is no time to hesitate: you have to decide immediately, before the disease progresses. She chooses the first of her, not frightened by the idea of ​​becoming a guinea pig, and is given ruxolitinib, a tumor growth inhibitor which today, after the trial, is an officially approved drug for the treatment of myelofibrosis. For three years the therapy works, and Francesca continues to live more or less the usual life, «only with a little tiredness and a few more sacrifices: I had given up, for example, to get on the rides with my son. Being a sports person helped me a lot: I learned that a trained body reacts much better to cancer and therapies ». Then the tumor starts again. And she begins another journey, even more challenging. “In December 2019, my exams collapsed: at that point there was no longer any therapeutic option, other than bone marrow transplant. Two donors had been identified, who sadly withdrew when the pandemic broke out and hospitals suddenly became high-risk places. For the transplant I had to wait until July 2020 ». In all, seventy long days of hospitalization, between intensive care and clean room, without being able to see her husband or her child. Then, slowly, the recovery: the new marrow takes root, she begins to produce new blood cells, healthy, which progressively mix with those of Francesca, until they completely replace them. «In my veins, in my brain, now the blood circulates entirely with the DNA of another person – the psychologist continues – which is quite alienating, since blood is the first symbol of family belonging. My blood type has also changed with the transplant: it’s a bit as if I am no longer a relative of anyone ». The months after the operation are just as delicate, since Francesca’s immune system is very fragile: her white blood cells are just born, inexperienced, unprepared. And she, in fact, she has to start the vaccination cycle all over again, like a child. Then, finally, the light: «Little by little, my body started to recover. And I started trekking again, my favorite sporting activity ».

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But that’s not enough: Francesca has aimed even higher, over 4 thousand meters high. The psychologist joined the MieloSpieghi campaign (see box), to raise public awareness on chronic myeloproliferative neoplasms: «I asked my haematologist if I could climb Mont Blanc – she says – and he said yes. Also because, she explained to me, there are certainly fewer viruses and bacteria at high altitudes than there are at sea level, and therefore my immune system is in no danger. For me, the idea of ​​climbing Mont Blanc represented the possibility of spreading the effectiveness of the treatments and instilling courage in those who are sick like me. After several acclimatization climbs, at the end of July I was ready to climb to the highest peak in Europe, but I had to give up due to the weather conditions: too risky, the guides told me. The day I had to leave for the last peak, the helicopter rescue had to rescue two Spaniards in difficulty ». Not bad, because Francesca still managed to successfully reach the immediately preceding stage, the Vincent pyramid. 4215 meters high, and sorry if it is little. “Everything was documented on the Facebook page of the campaign, hoping to do good to sick people like me – she continues – because I am convinced that if when I was in intensive care I had known that a person with my same pathology was climbing a mountain I would have felt better. With this campaign I want to reiterate that the diagnosis of cancer is not a sentence. That together with the disease there is also the cure, and it is always a positive encounter ».

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Mielo-Spieghi, the awareness campaign

A community of over 31 thousand people, a board of ten hematologists and an exceptional patient, Francesca Masi, who will attempt to climb Mont Blanc. All united by the same goal: to raise awareness of chronic myeloproliferative neoplasms (polycythemia vera, essential thrombocythemia and myelofibrosis) and to encourage patients to give themselves new goals and return to life. This is the heart of the 2022 edition of Mielo-Explain, a campaign promoted by Novartis in collaboration with Aipamm and with the patronage of Ail and the MPN Advocates Network: among the planned initiatives there are a calendar of live Facebook meetings with experts and patients , to speak openly about therapies, intimate relationships, pregnancy, lifestyle; a column of video pills edited by a psychologist, a nutritionist and a patient rights expert; the publication on the campaign site of an online tool that helps patients to monitor their symptoms regularly. And then, of course, the story of Francesca Masi’s climb.

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