Anyone with a serious diagnosis knows it not only scares you, it scares the people who care about you. Hopefully, over time, your condition gets better, as it has for me with leukemia. You feel better, are less worried, become more knowledgeable, and you begin to go on with your life. The illness may still be there, and you still you need checkups or some treatment. But you move on. But for your friends who may not nearly be so much in-the-know, they may still be a few steps back in “worryland.” This past weekend I experienced that when I...

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Discussing cancer with adults can be difficult, but most adults have some experience with cancer and can relate to this in some way. How you discuss cancer with children is more complex but I believe there is important good news to share. Last Saturday I was the invited speaker at the American Cancer Society’s Relay for Life event at the high school in my hometown, Mercer Island, Washington. There are many such events happening right now across the nation. A couple of hundred young people ages 15-18 sat on the grass in the sun as we kicked off the afternoon...

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From day one, Patient Power has been about giving a voice to patients and addressing the real concerns and issues of patients and caregivers. That’s one reason we do regular visitor surveys, such as our current Spring 2012 survey. We constantly strive to better understand the people we serve; their needs and concerns; and the impact of what we provide. The initial results are fascinating and I wanted to share some here (click here to see the up-to-date results) . If you haven’t already participated in the survey, please add your voice right now. While 94 percent of survey respondents...

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Just recently I had the opportunity to attend the CLL LIVE gathering in Niagara Falls, Ontario, Canada. I was a speaker there and it was a thrill, really, to meet several people I only knew from the Internet. I began connecting with other people with chronic lymphocytic leukemia (CLL) online exactly 16 years ago when I was first diagnosed with the disease. Over the years I have read posts from hundreds of people around the world. In Niagara Falls I got to meet a few of them in person. It was like meeting old friends. While there I interviewed several...

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I am writing this in flight across Canada. West to East. At Niagara Falls I will join a gathering of patients. I have met few of them but know many. That’s the beauty of the connections we’ve made since the mid ‘90’s when I was diagnosed with chronic lymphocytic leukemia. The bits and bites of the Internet have served us. In milliseconds we’ve found friends…guides to help us, calm us, and just by connecting know there is hope. I am so thankful my diagnosis came at a time when this support had started. I am also thankful that, over time,...

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Pharmacists are among the most accessible of medical professionals, but sometimes we hesitate to consult with them about our medications, or we forget they are there to help.  Don’t hesitate to ask your pharmacist!  Learn more…

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In a few days my cousin will have breast surgery. She doesn’t know if it will be a lumpectomy or more. That uncertainty is scary. The problem is that we are still not quite at the level of imaging and seeing inside the body that the doctor on Star Trek, “Bones,” was able to achieve with the magic wand-type device he could hold over a person and see what was wrong inside. Radiology has come a long way in the real world but in some areas the images leave doubt as to what is really inside the patient. That makes...

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One of my favorite Yiddish words is Chutzpah. It literally means gumption. And one of my favorite people with chutzpah is Matthew Zachary, the brain cancer survivor from New York City who founded the premiere organization for young adults with cancer – The I’m Too Young For This! Cancer Foundation. Matthew is a savvy marketer. He uses that skill to get attention for a segment of the cancer population, as he has explained to me many times, that was too long overlooked and whose members felt detached and alone. Not anymore! This week more than 600 young adults in this...

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When you have a diagnosis, you gather information from many sources: specialists in your condition, other patients and educational material on the Web and in print.  So how do you sort through it all, vetting that which is significant for you?  In this video blog, featured on PremeraNews.com, Andrew Schorr suggests one simple idea for getting the help you need to make the right health care decisions and maintain your sanity!

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The other day I interviewed Dr. Paul Schellhammer, a noted urologic oncologist in Virginia Beach, Virginia. Paul is 71 now and is very well known and respected in his field. He is a former president of the American Urological Association. As you can imagine, Paul has treated many men for prostate cancer. All men have a high likelihood of developing it as they age but in the vast majority of cases it is non-aggressive. Increasingly there are men who receive no treatment. It’s simply what doctors call “a finding.” But in 2000 Paul met prostate cancer “up close and personal.”...

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