A New Chapter

D4DEFFB7-2F8D-445D-83C8-B2849174CD25For 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 up this week which has led us to the decision to move onto a wonder drug called ibrutinib. A once a day pill which I’ll need to take “forever” ( or until new research dictates otherwise). This drug will essentially allow me to manage this disease preventatively rather than waiting for a relapse to then treat. Ibrutinib  has been phenomenally successful with CLL patients and while my jury is still out, the side effects are expected to be minimal and manageable.


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And it comes as no surprise that funding for ibrutinib’s research on CLL applicability was provided by The Leukemia & Lymphoma Society. I don’t want to hit the  celebration button yet as this stuff now needs to do what it’s supposed to do, and I need to tolerate it. But if this works, it’s the end of conventional toxic chemo and infusion as I’ve known it. And if this works, a lot of prayers were answered this week.


So I now take my chemo “to go” and in the comfort of my own home. It’s a good day. But then again, they’re all good days. That’s a choice we can make and I choose good.


#cll #chroniclymphocyticleukemia #lls #leukemia&lymphomasociety #tnt #ibrutinib #imbruvica # janssenpharmaceuticals #survivor #relentless #somedayistoday

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September Updates!

Many apologies for dropping the ball on blog updates. I have been extremely active on social media and if you’ve been following along you know that a lot has been happening in Camp RemissionMan. I promise to get back in the habit of posting ad updating to all platforms going forward! There is so much to catch you up on as life is happening full steam ahead but let me just give you a handful of quick updates to make sure you haven’t missed too much.

Most importantly, we celebrated the birth of our 4th grandchild in July. Wallace Daniel Warner is a happy, healthy little boy who instantly stole our hearts. He is also the mellowest baby I’ve ever met. (A.K.A Mr. Chill or Zen baby).

In August I had a couple of opportunities to address audiences at my place of employment on Maintaining Positivity Through Adversity. While I’ve given similar talks to other audiences many times, this was the first time I’ve done so at work. There was a certain sense of raw vulnerability in sharing things with people who you see every day in the work place. They were well received though and another one has been scheduled for October with talks of doing even more.

In September we enjoyed another epic vacation in Lake Placid where I also raced the Lake Placid Ironman 70.3 with friends. It was a great time, enjoyed with the people who matter most.

Training also continues for the Philadelphia Marathon in November. This will be career marathon number 27! I laugh every time I think about the conversation I had with my wife in 1993 about doing “one” marathon…. Just to “get it out of my system”. Fortunately, it’s never left my system.

Stay tuned! More to come!

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Thanks Dad

We had an amazing Father’s Day picnic yesterday at your park with everything from badminton to kickball to whiffle ball to Pica’s pizza. Our family is growing. You would be proud. Really proud. I sure am and the older I get the more I realize that there aren’t too many differences between you and I. I hope you got a few of the messages I was sending you yesterday. In case you missed them …

Thanks ….

For  teaching me both strength and compassion

For showing me what family first means

For setting a quiet example when you didn’t even know you were

For always believing in me & everything I did

For catches on the front lawn

For coming to every game I ever played

For giving me enough rope to figure it out for myself

For always being there when I didn’t quite figure it out right

For showing me how to take time to just “be”

For long wondering walks around the old neighborhood

For building that backstop and those benches and silkscreen all those shirts as you and the other dads built the old Ardmore baseball league with sweat, blisters, and passion

For showing me how to be a Phillies and Eagles fan

For a  perfect childhood which paved the way for a continued charmed and blessed life

Thanks for you, Dad

I love you

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More Flyers Charity Classic News

I wanted to share this nice article that was just posted on the Flyers Alumni Association site(s) regarding the Charity Classic and our Chico’s  Vibe team Band on the Run!

Check it out HERE!

Also, our team fundraising page can be found HERE!

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Chico’s Vibe & Flyers Charity Classic

Come join your Chico’s Vibe friends for an unforgettable day of fun and giving back.

The Toyota Flyers Charity Classic is a city-wide event incorporating a 5k walk/run through the Philadelphia Navy Yard, a 10-mile family bike ride through the Navy Yard and FDR Park, and two bike rides – a 50K and a 100K.

In addition to the Classic, families of participants and fans, alike will enjoy the Flyers Fan Fest, a fun, family-friendly outdoor celebration to enjoy throughout the day. All proceeds benefit Flyers Charities and the Flyers Alumni Association and the various non-profit organizations they support throughout the Greater Philadelphia region.

A guaranteed epic finish line after party with the music of Chico’s Vibe!

Be sure to join the Chico’s Vibe team name “Band on the Run” to be one of the cool kids when you register for any of the events. Sign up and share with your friends. Reach out to me at stephensbrown@verizon.net with any team questions as I am co-captaining this initiative with Chico’s Vibe sax man John Parkinson. Register TODAY!

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Perspective

I thought I had a “bad” day the other day at work. I walked to my car to go home feeling a little sorry for myself but glad the work day had ended as I tried to shake it all off. As I walked  I heard a familiar voice call out to me. “Good afternoon young man. How was your day?” The voice came from a local homeless guy who I see frequently in Wilmington. I often stop to talk with “Doc” and sometimes slip him a few bucks. My immediate internal response to his question was “well, my day kind of sucked actually!” But I realized who I was talking to so I quickly dialed that response back in. Given my delay in responding Doc assumed I hadn’t heard the question so he asked again… “Good afternoon young man. How was your day?”

Finally after another long pause I said, “Doc, tomorrow is going to be a better day. I can feel it in my bones”.

And Doc quickly responded with “Of course it is!! God bless you young man!”

You never know where life’s next lesson may come from or who may be your next teacher or therapist. Keep yours eyes and heart open.

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Homeward Bound

alefty1Many of you have been following the journey of my brother in law Lefty-David Snyder since March 4th when he suffered a brain aneurysm. We are extremely happy to let you know that this walking miracle walked his way right out of rehab and into his own home last week. While there is still a long road ahead, the miles that have already been traveled and the hurdles that have already been overcome are beyond comprehension. Thanks for everyone’s support and well wishes. Hope to see you at his benefit on 6/22.

alefty2

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Power Your Life Talk Radio Guest

More details coming as we get closer. But mark your calendars for Wednesday June 20th at 12 noon EST and try to be near your computer/phone/tablet/device of choice. I’ll be a guest on Dr. Jo Anne White’s talk radio show Power Your Life. The show is live and streamed simultaneously. The format of the show is conversational and also airs on these media outlets: iTunes, PlayerFM, Stitcher, PostcastLand, Tunein, Podcastpedia. Stay tuned!

power your life

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2018 Broad Street Run & Clean Bill!

bsr steveLast weekend I ran in my 11th or 12th Philadelphia Broad Street 10-Miler. What a fantastic race and one of my all time favorites. While my finishing time was a far cry from my 1:18 PR on that course, I ran strong and had a complete blast. There were a few things that made this year a little extra special. For one, my daughter Danielle also ran this year. That was pretty cool because both of my daughters have been at several Broad Street races to cheer me on. So having her race with me was the best.

Second, my other daughter Jennifer’s husband Phil also ran this year! And Jennifer was there to cheer us all on. So watching Broad Street evolve with the next generation is quite special.

And the last reason that this year was extra awesome was the fact that I had my oncology check up two days before the race. And my blood work, markers, and indicators were all spot on perfect. What a great day!

bsr steve phil jenniferbsr steve nellie katie

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Speaking at National Cancer Survivors Day

If you are Philly local, or want to be for a few hours, come check out what will be an amazing day of celebration. I’ll also be giving away a bunch of copies of my book Relentless Mettle; My Cancer, My Rules at this event. I’d also like to mention that the event organizers asked me if I wanted a table to sell books but I wanted Survivors Day to be a true celebration and not about anyone making money. So I opted to just give a bunch away. And in that vein, I also opted to donate my speaking fee back to the Sidney Kimmel Cancer Center into their Quality of Life Fund, a fund which helps defray medical expenses of those going through treatment. So this is a 100% free day of celebration on all fronts. Come join us.

cancer survivors day at sidney kimmel pr

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