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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I spent one day last week at MD Anderson Cancer Center in Houston.  I was there for a checkup, having first visited the center 16 years ago. There are several new buildings now and its much bigger, but the leukemia center is still on the 9th floor and many of the people who work there are still the same – only a bit older, just like me. One of the things I love about the leukemia center is that it hasn’t moved. The waiting room is sizeable but quickly becomes jammed with people. They have chronic lymphocytic leukemia or CLL,...

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If you have an acute health problem like a heart attack or stroke, the ambulance will usually take you to the nearest hospital. For something less urgent you will probably go where your primary care doctor refers you. But if you have something chronic and long-term – it could be diabetes, ongoing heart problems, or a cancer – you might have more to say about it and where you choose to get care. And a hospital’s claims of highly rated care or state-of-the-art, multimillion dollar equipment may be only part of the equation. Hospital marketers don’t understand that. In our...

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I have now been in two clinical trials. The first was for chronic lymphocytic leukemia (CLL) in 2000 and 2001. The second has been since August 2011 for blood clots in my legs or “deep vein thrombosis.” I wanted to share my experiences with you in the hope more people will consider entering a clinical trial. The CLL trial was a phase II trial. It was only at one medical center, MD Anderson Cancer Center in Houston. The researchers were trying to figure out the best dose and schedule as they combined a new targeted therapy with established chemotherapy drugs....

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