November 10th, 2010 by AndrewSchorr in Better Health Network, Health Tips, News, Opinion, True Stories
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This past weekend Oscar-nominated Hollywood and Broadway actress Jill Clayburgh died at age 66. The cause was chronic lymphocytic leukemia (CLL), which she had been fighting, privately, for 21 years.
As you may recall, I, too, have CLL and I was diagnosed at the same age, 45. For me, I am 16 and a half years into that “battle” although, fortunately, I have been feeling very good in the ten years since I received treatment as part of a breakthrough clinical trial. While I have no symptoms and take no medicine I do not consider myself cured.
So when someone like Ms. Clayburgh dies of CLL after 21 years, I can’t help but wonder if the disease will shorten my life too, even if I feel good now. That brings up the question of what do we do with the time we have when we know we have had a serious diagnosis and the clock may be ticking for us — or not? Read more »
*This blog post was originally published at Andrew's Blog*
October 23rd, 2010 by AndrewSchorr in Better Health Network, Health Policy, Opinion, Research, True Stories
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I am just back from Phoenix where I spent the weekend with people living with CML, chronic myelogenous leukemia. The operative words are “living with” because it wasn’t very long ago when people did not live long with this disease. However, medical science and dedicated researchers like Dr. Brian Druker at OHSU in Portland, Oregon have brought us what first appear to be “miracle” pills (Gleevec, Sprycel, and Tasigna) that can keep patients alive and doing well.
My weekend was spent with several people, all taking one of the tyrosine kinase inhibitor drugs, as they were planning next steps for a new advocacy organization, The National CML Society. The Society is the creation of Greg Stephens of Birmingham, Alabama, a business consultant who lost his mother to CML. Now he has devoted his life to giving voice to patients, researchers, and building a vibrant community.
CML is not common. There are just over 4,000 new cases in the U.S. each year. And, now that there are three powerful and approved medicines, some people feel the disease is “cured” and not in urgent need of public discussion. The patients I met with said this was “baloney” and they were driven to support the new society because they felt the obvious advocacy group, The Leukemia and Lymphoma Society, was not giving them enough attention nor listening carefully to their stories. Read more »
*This blog post was originally published at Andrew's Blog*