OCNJ 10 Miler & Ibrutinib

OCNJ 10 MilerMy first full week with my new oral chemo had me feeling good enough to jump into the Ocean City New Jersey 10 miler. And I felt beyond great.

It was just a perfect day with much to be thankful for. Especially my wife Mary Grace for always being ….. everything. I could never do what I do or fully be who I am without her love and support. And thanks to the OCNJ Half Marathon  10 Mile Run/ Walk and 5K crew and all the volunteers for another outstanding event.

If I’m now seeing my new normal on ibrutinib, I’m extremely optimistic because this normal is better than what I thought normal was when I thought my old normal was good. Follow that? And who can’t love a well run race that’s 5 miles from home with free parking 20 yards from the start and 50 yards from the finish!!

The race itself is a crazy beautiful one that hugs the Ocean City coastline and boardwalk. It’s quite familiar territory that I run and bike on all the time. It was great racing there, feeling healthy, on such a perfectly picturesque morning.

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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 54 rounds of conventional chemotherapies and monoclonal antibodies, and countless rounds of high doses of steroids, we’ve kept my leukemia in check, and in remission.

And through all of the treatment and non-treatment, and monitoring, and CT scans, and blood draws, and pet scans, I’ve done my best to live a “normal” life. And for me, normal is characterized by running marathons and competing in triathlons as well as coaching, while enjoying an amazing family, and holding down a full time “real job”. Of course I had some periods of time that may not have been as productive as others, but looking at the big picture, I’ve been blessed in what I’ve been able to accomplish.

My check ins with my oncologist have never too far apart. At a maximum I see him every 3 months to check blood levels. More if something just feels a little “off”. While I’m lucky that I have responded to the various treatment protocols that have been prescribed, these treatments can be toxic and the thought of needing to go through this for the rest of my life does get worrisome at times. Sure, I’m strong and resilient now but years down the road may tell a different story.

I’ve known for a couple of years that we will soon want to explore a different treatment option for me. A better, more effective, and less toxic option. I’ve hoped and I’ve prayed for a better answer. While you won’t hear me speak very publicly about my personal faith or spirituality, that’s not due to a lack of belief. And while you will see me attend formal Church on occasion, you will more often find me having up close and personal conversations with God while on a run, on my bike, while gazing at a calming body of water, or somewhere in quiet meditation. So A friend of mine (who happens to be an oncology nurse) recently reminded me to “Trust the science, and trust the Lord”. And I feel like that’s exactly what I’ve been doing.

Well, soon is now and last week, those prayers may have been answered. Last Saturday I started on a new oral, once a day, chemo pull called Imbruvica (Ibrutinib). We made the decision to treat again because my lymphatic system had again become significantly enlarged. We made the decision to treat with Ibrutinib because it was time for better. I was a little nervous about starting something that I had no history or proven success with. But I was ready. I needed a new solution to more effectively manage my chronic blood cancer.

I am now on day 7 and am happy to report that my side effects are minimal to none. My lymph nodes are drastically decreasing in size and swallowing has been much easier and back to normal. I’ve even been able to run and work out on this drug with virtually no limitations. I’m well aware that 7 days does not a case history make, but I am extremely excited with what I’m seeing (and not seeing) and feeling so far.

More to come and thanks for following my journey.

Trust the science, trust the Lord.

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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 effects at all since taking my first dose. If I had to reach for something, I would say maybe there has been some mild and occasional tiredness which in reality I could chalk up to simply  living life.

Lymph nodes are shrinking significantly and I generally feel really good. In fact, on my 2nd day I went out for what ended up being a pretty strong 5 mile run along Philadelphia’s Forbidden Drive. And it was one of my best runs in a while.

The real test will be in the coming weeks because today, I am also starting to taper off of a high dose round of steroids. Next week, I’ll be completely off of the steroids and it will just be me and Ibrutinib. The fact remains though that I’m experiencing no negative side effects from the new drug, and that has us all pretty happy!

Stay tuned.

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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.


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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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.


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