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KenC
Multiple Myeloma Discussion • May 14, 2025
Sharing Stories of Hope with High-Risk MM
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Hi Everyone, Many of us are diagnosed with high-risk myeloma. The simple mention of high-risk triggers a mountain of questions and, more often than not, considerable anxiety. The notion of high-risk has a negative connotation and we tend to attach too much significance to it. Consequently we quickly spiral into doom and gloom. I was diagnosed with 1q gain (4 copies) combined with t(4;14). The prognosis for my cytogenetic profile is quite poor. Yet, 16 years after diagnosis, with 5 lines of treatment under my belt, including CAR T-cell therapy (Abecma) 3 years ago, I have responded well and today enjoy amazing quality of life. I dare say that I almost feel cured. Rather than focus negatively on the high-risk aspect of my cytogenetic profile, I just tried to reframe my mental stance to the treatments I received. I tried to look at them positively and, miraculously, enjoyed up to 3 years of response for every line. I interpreted that as a sign that my chances of survival were better than the statistics might suggest. By shifting to a positive perspective I empowered myself to just accept the situation and move forward confidently with hope. I would be keen to know how others in the community rise to the challenge of a high risk cytogenetic profile and whether they allow the poor prognosis to weigh on their minds and undermine their wellbeing and perhaps affect decisions. What has been your response to the high-risk diagnosis? What challenges did you manage to overcome? How did the prognosis affect your outlook? How do you perceive your outcome today? Thank you for your thoughts!
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