Caregiver and Patient at the Patient Power Myeloma Forum in Barcelona When I was first diagnosed with chronic lymphocytic leukemia (CLL) in 1996, I just wanted the doctor to heal me. I dreamed of a magic wand that a healthcare provider could wave that would take the disease away as suddenly as it had appeared for me (even though it had probably been developing for years, I just didn’t know it!). No such luck, of course. So what followed was a total disruption to my life. Fear, sleeplessness, psychological counseling, and a long procession of diagnostic tests and years of...

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My name is Margo, and I was diagnosed with PV in late spring of 2014.   Probably like many of you with an MPN diagnosis, it was incidental.  I was attending a special event and did not feel well.  This led to a series of steps, which brought me to Dr. Brady Stein, a wonderful doctor.  I came to our first appointment with a single-spaced narrative and set of questions about red blood cell production.  He leaned forward and told me the study of MPNs was his life’s work and that he would take good care of me.  And as I...

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Social media that connects me with other people with cancer—especially the specific cancers I have dealt with—has been a godsend to me. In 1996, when I was diagnosed with chronic lymphocytic leukemia (CLL)—a disease I had never heard of—it was other patients on the original ACOR.org listserv that connected me with an expert in my condition and gave me emotional support. That connection saved my life, because I learned about an important clinical trial and was put in touch with other “list members” who were already in the trial that was proposed for me. They encouraged me to enter; I...

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In short, YES. It’s the only way treatment is advanced in diseases like multiple myeloma and has resulted in FDA approval of six drugs for myeloma treatment in the last 11 years...with more coming.  We don’t have a cure yet, but I’ve seen survival averages double, even triple since I was diagnosed 20 years ago.  And how did these therapies come about? Myeloma patients participating in clinical trials. In short, there are three phases of clinical trials: I-determine maximum tolerated dosage; II-determines if the new treatment works; and III-compares new treatment to standard of care.  There are trials for all...

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I had recently retired and started to get busy with my projects when I paused briefly for a routine physical—no worries, just a quick in-and-out and back to the fun stuff. But wait. There’s more—like the doctor bringing me back in to his office, and closing the door. “We have confirmed that you have cancer. It’s not curable. It’s called multiple myeloma, and you probably have three, maybe four years left,” he said. It was March 8, 2012. Well, the next couple of days were mostly a blur of trying to figure out just what this was all about, this...

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Susan Bottega and her husband, Bob As I listened to Esther tell her story, my own came flooding back to me. My husband was always the "tough guy"—nothing was too heavy for him...literally. He was very "old school"—wanted to be the "man" of the family—and I should be the "weaker woman." Well, that never really existed—maybe only in his head. I'm an RN with many years of experience. One might think that is an advantage, but it also has its inherent difficulties. It robs you of the time to take in what is dealt to you—you instantly know where you...

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El doctor Javier Cortés, jefe del programa de Cáncer de Mama en el Hospital Vall d'Hebron (Barcelona), explica las nuevas opciones de tratamiento en pacientes con cáncer de mama metastásico. También comenta los futuros tratamientos que están en desarrollo para pacientes de cáncer de mama con la mutación BRCA.

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El 11 de octubre Patient Power celebró su 1ª jornada para pacientes en España, dedicada a los avances en la investigación del mieloma múltiple “Muchos de los que estamos aquí veremos la cura del mieloma múltiple, dijo el doctor Albert Oriol, adjunto de Hematología en el Institut Català d’Oncologia (Hospital Germans Trias y Pujol). La frase resume el espíritu de la jornada celebrada el  sábado en el Hospital Vall d’Hebron, en la que participaron más de 100 pacientes de mieloma (cáncer de la médula ósea) y familiares, con el objetivo de entablar un diálogo con los mejores investigadores en la...

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Dr. Leonard Salz, a renowned GI cancer specialist at Memorial Sloan Kettering Cancer Center in New York, said on the U.S. news program “60 Minutes” the other night that we must—in the U.S.—discuss the high cost of cancer drugs. Dr. Hagop Kantarjian, head of the leukemia department at MD Anderson, whom I know well, agrees as do so many other doctors, patient advocates and patients. Many therapies are now costing over $100,000 a year. And in this age of “chronic cancer,” you might take that medicine for years. Now some experts are saying to really keep the cancer at bay you...

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When I was first diagnosed with multiple myeloma in 1995, I was assigned an oncologist. Since I didn’t know anything about myeloma, I asked him about his experience and, in particular, how many myeloma patients was he seeing.  When he said “two,” that didn’t give me much confidence and I looked for another oncologist/hematologist, whom I found. After “interviewing” him, I asked my same question to which he answered “12.”  I liked him and figured with nearly an order of magnitude more treating patients, he would be my new oncologist (even though he agreed with my original oncologist’s treatment recommendation)....

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