Tag Archives: cll

The Long Run

My daughter wrote this piece for a non-fiction & memoirs creative writing assignment. While I’ve lived every step of this journey in real time and in the first person, hearing a loved ones interpretation of these same events proved very moving for me. Hopefully you’ll appreciate it as well. The Long Run Steve Brown sits attentively at [...]
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Living with CLL – WebMD

WebMD published a “Living With CLL” patient guide and asked me to contribute to the effort. Follow the link for the complete guide but my page is below.
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Living with CLL

I recently did an interview for Health Monitor and shared a few tips on living with a chronic and incurable cancer like chronic lymphocytic leukemia. Hopefully you enjoy reading it!
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On Surviving

When it’s chronic and incurable you don’t ever get to let your guard down and say “I survived that”. It’s never completely behind you and you live in the active state of survivorship each and every day. You have great days, you have good days, you have less than good days. Your shield is constantly [...]
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I’m on TOP

Last week I had a follow up with my oncolodoc. My blood work continues to behave and is responding exactly as hoped now being on the targeted therapy drug Ibrutinib for 5 months to treat my chronic lymphocytic leukemia. The road to “normalcy” continues but for all intents and purposes I FEEL no evidence of [...]
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Dance with Me

Quick update for those keeping score at home. Today is day 13 on my new daily chemo ibrutinib and I continue to see amazing results with virtually no side effects. I also had my 2 week oncolodoc check in today and he was equally pleased. My blood work is responding exactly as it’s supposed to. [...]
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Hope, Belief, Trust, and Science

For over 12 years I’ve lived with chronic lymphocytic leukemia. There  is no cure for this chronic blood cancer today. When things go well, you strive to manage the disease and treat it with conventional therapies when symptoms become problematic. Remission is the perpetual goal. And for over 12 years, we’ve done just that. With [...]
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Day 5 with Ibrutinib

Well, I am most ecstatic to give this update on what is now day 5 of my new chemo drug, Ibrutinib. While proven to be quite effective, there are a number of possible side effects associated with this drug. The keyword for me so far is “possible” because I have felt little to zero side [...]
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A New Chapter

For 12 years I’ve managed my CLL by reacting to flare ups and relapses with periodic chemo treatments using drugs like Bendeka, Fludara, and Rituxan, and megadoses of steroids like Decadron, Prednidone. That accounted for 54 rounds of toxic chemo and God only knows how many steroid cycles over those 12 years. I experienced another flare [...]
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Diagnosis Anniversary

2/24/2006. It’s been 12 years since I was initially diagnosed with chronic lymphocytic leukemia. That’s 4,383 days. I’ll admit there have been a few of those days where all of the emotions associated with cancer may have gotten the better of me and I felt like throwing something in the Schuylkill River. But the majority [...]
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