Myeloma Musings: Clinical Trials, ASH, And The Future Of Treatment
BY LIZZY SMITH
Last night, we hosted a dinner party for the neighborhood. I met all kinds of people I didn’t know and didn’t even recognize (sad, I know). It’s amazing how quickly cancer comes up even when I don’t initiate the topic, and how many people are affected by cancer. Anyway, I sat next to one woman and her husband and she told me that she was a cancer survivor. When she was diagnosed a decade ago, she had stage IV lung cancer. What an amazing story. After ten years, she is pretty much considered “cured.” Go.Fight.WIN! I love stories like hers.
Later that evening, I sat next to another woman who told me that her husband had had multiple myeloma. I almost fell out of my chair. “Me too,” I said. She looked shocked. How can someone as young (and healthy looking) as me have myeloma? Oh, if only looks had anything to do with it! Anyway, her husband was diagnosed in 2000 after having a nagging backache. He had a stem cell transplant and went into remission and was doing well. Twelve years later, he relapsed and they determined that he was ready for another stem cell transplant. Just prior, however, they found that he had two secondary cancers and one of them was highly aggressive. He passed away from one of the secondary cancers three months later in 2012, not long after I was diagnosed. She still keeps abreast of myeloma and she told me that myeloma was experiencing more progress than any other cancer.
Yes, I know, I said. And yet myeloma receives just a fraction of the funding. Why is that? Amazing doctors, perhaps less politics so doctors and researchers are able to spend more time in the labs, and, well, luck? Prayers? Karma? I hate to use any of those words because every cancer deserves cures.
As I attended ASH (my first ever) a few weeks ago in San Francisco, I was fascinated by the topics and the general atmosphere. I didn’t quite know what to expect but I will say this: while ASH covered a variety of hematological diseases, I was amazed at how much of it was focused on myeloma. The larger sessions that were myeloma-specific were packed and interest levels were high. This gave me great hope for the future of this disease, for finding treatments and cures. There were so many updates on clinical trails, especially, it seemed, for relapsed and refractory patients. In fact, reviewing one press release after the next, I often wondered if the latest clinical trial was perhaps one I had already read. My head was literally spinning over it all as I did my best to discern what they all meant, tried to keep the names of the drugs straight, and the future of treating this disease.
So my key take away for myeloma this last week is: myeloma is treatable and one day (soon?) curable for many patients, many doctors are committed to finding cures and treatments, and myeloma survivors (I met many in San Francisco) are one amazing group of people. In fact, over dinner, I had the pleasure of joining trailblazer and myeloma survivor Jenny Ahlstrom, and meeting in person for the first time Pat Killingsworth and Gary Petersen (both guest writers on this site) for dinner. Being in such great company and knowing that I am not fighting this battle alone gives me comfort and hope.
To read the full article, click here or paste this into your browser: http://www.myelomacrowd.org/myeloma-musings-clinical-trials-ash-future-treatment/
Last night, we hosted a dinner party for the neighborhood. I met all kinds of people I didn’t know and didn’t even recognize (sad, I know). It’s amazing how quickly cancer comes up even when I don’t initiate the topic, and how many people are affected by cancer. Anyway, I sat next to one woman and her husband and she told me that she was a cancer survivor. When she was diagnosed a decade ago, she had stage IV lung cancer. What an amazing story. After ten years, she is pretty much considered “cured.” Go.Fight.WIN! I love stories like hers.
Later that evening, I sat next to another woman who told me that her husband had had multiple myeloma. I almost fell out of my chair. “Me too,” I said. She looked shocked. How can someone as young (and healthy looking) as me have myeloma? Oh, if only looks had anything to do with it! Anyway, her husband was diagnosed in 2000 after having a nagging backache. He had a stem cell transplant and went into remission and was doing well. Twelve years later, he relapsed and they determined that he was ready for another stem cell transplant. Just prior, however, they found that he had two secondary cancers and one of them was highly aggressive. He passed away from one of the secondary cancers three months later in 2012, not long after I was diagnosed. She still keeps abreast of myeloma and she told me that myeloma was experiencing more progress than any other cancer.
Yes, I know, I said. And yet myeloma receives just a fraction of the funding. Why is that? Amazing doctors, perhaps less politics so doctors and researchers are able to spend more time in the labs, and, well, luck? Prayers? Karma? I hate to use any of those words because every cancer deserves cures.
As I attended ASH (my first ever) a few weeks ago in San Francisco, I was fascinated by the topics and the general atmosphere. I didn’t quite know what to expect but I will say this: while ASH covered a variety of hematological diseases, I was amazed at how much of it was focused on myeloma. The larger sessions that were myeloma-specific were packed and interest levels were high. This gave me great hope for the future of this disease, for finding treatments and cures. There were so many updates on clinical trails, especially, it seemed, for relapsed and refractory patients. In fact, reviewing one press release after the next, I often wondered if the latest clinical trial was perhaps one I had already read. My head was literally spinning over it all as I did my best to discern what they all meant, tried to keep the names of the drugs straight, and the future of treating this disease.
So my key take away for myeloma this last week is: myeloma is treatable and one day (soon?) curable for many patients, many doctors are committed to finding cures and treatments, and myeloma survivors (I met many in San Francisco) are one amazing group of people. In fact, over dinner, I had the pleasure of joining trailblazer and myeloma survivor Jenny Ahlstrom, and meeting in person for the first time Pat Killingsworth and Gary Petersen (both guest writers on this site) for dinner. Being in such great company and knowing that I am not fighting this battle alone gives me comfort and hope.
To read the full article, click here or paste this into your browser: http://www.myelomacrowd.org/myeloma-musings-clinical-trials-ash-future-treatment/
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