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Here's news and info about three primary blood cancers, Lymphoma, Myeloma and Leukemia with a decided patient's perspective.  I hope this helps whether you're newly diagnosed or veteran survivor.  

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I'm sorry, there's no easy way to tell you this.

I'm sorry, there’s no easy way to tell you this.                12 April 2016

I had heard similar words eight years ago when the doctor said, “I really don’t know much about your rare cancer.  It’s incurable and normally indolent” (slow growing).  Most of the published info back then indicated a five-year outlook.  Friends and family and many audiences have heard my “success story” beating that poor outlook because I bet on forward-looking science and chose to participate in clinical trials which played out relatively nicely, until now.

This time, it’s aggressive, metastatic, spread out from the prostate to bones and lymph nodes and with plenty of pain but the worst is the pain of uncertainty.   Until today, I’ve struggled with telling you about this.  The chatter is well underway because of incredible friends and family, advocates and life sciences professionals who care.

Here’s the skinny.  I was diagnosed with an aggressive metastatic prostate cancer.  Yes, it’s just not fair.  It’s complicated because I’m now battling two cancers, issues with toxicity and implications for the future treatment options because neither is curable.  And there’s that nagging question, how much time do I have?

I’ve learned so much about survival, how to more intelligently play this game to win or delay the inevitable, eagerly earning/accepting periods of “progression free survival” during which the promise of science and medicine can be fulfilled as they bring us new therapeutics to help “manage” cancer. 

Rather than settling for “standard of care” which might be good enough, I took my own advice finding the best research, care and compassionate teams available, an ongoing process, exploring what I hope will be the most effective and safest treatment options from Johns Hopkins University/Hospital in Baltimore and Dana Farber Cancer Institute in Boston.  I can't wait to tell you more about who, what, and why. 

One of the many unexpected benefits being involved in Advocacy is the number of advocates and life sciences pros that came forward and offered to help me.  The social media, messages, emails, cards and more are incredible.

I’ve been calling in favors big time and true generosity, care and compassion from around the world abounds.  Infusions of encouragement hope are so helpful.

Advocates are told “put on your own oxygen mask first.”  Heeding this warning, yesterday was my last day volunteering in Legislative Advocacy convincing Massachusetts lawmakers that “giving a state run panel authority to cap expensive drug prices” is not the solution.  

I’ve cancelled most of my Research Advocacy speaking engagements scheduled for the next few months again following my own “big mouth recommendations” to Advocates and Survivors to slow down and take time to get better.

What will I do with all that new free time in the infusion chair?  More research, share more patient’s perspective with policymakers and lawmakers, help new support group initiatives and most important focus on renewed friendships more intense love for my family and friends and offer a very BIG THANK YOU.

One of my three fabulous daughters (don’t get me started) Patti, has written a loving, engaging and gripping blog about what she and so many others are feeling.  It gives a very personal insight into a cancer diagnosis and why this Dad and GrandDad is so proud of her and my family.  

For more info, please see https://pippilaroo.wordpress.com/2016/03/15/team-whelan-fights-again/

I wanted to make this message as personal to you as possible;  I hope you don't mind receiving this by way of social media.

Jack Whelan

 

 

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From Kym Martin  | On April 14, 2016 @11:08 pm
Love you, Jack! Thank you for continuing to share your journey and inspiring so many of us along the way. You're an incredible mentor and I'm beyond grateful for our initial meeting around this time last year at Health Refactored in Boston. The impacts you've had - and will continue to have - in the hearts of those who know you are immense blessings!
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From Susan Weiland | On April 13, 2016 @01:35 pm
Jack my heart goes out to you and your family! You are truly one special guy and ALL of you are in my prayers daily! Take care of yourself!! Susan
From Anne Llewellyn | On April 12, 2016 @09:34 pm
So sorry Jack to hear this. Take time to be with your family, rest and take care of yourself. I hope social media will continue to be a comfort to you as it will show the gratitude for your advocacy work and the friendships that you have built. Although we have not met, I feel like I know you....You are in my prayers and thoughts. I got this link from a person I met on Facebook. She put together this video to show the resilience of cancer survivors. What hit me as I watched it was how many people had reoccurrences and how brave people are. Take some time to sit back and watch it. http://missionpositivefilmsblog.com/mpf-the-celebrate-life-events-fighter-and-survivor-slide-show/

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