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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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 Is this You cancer patient    Click This is me    We are not alone, cancer warriors
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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

 

As You Were Saying.... Drug price controls unhealthy Rx

Fun Fundraiser for ACS- Comedy Night Londonderry NH March 28

If you're within driving distance of Dana Farber in Londonderry​ NH don't miss this night of comedy with proceeds going to American Cancer Society​ in connection with DFCI, a fun fundraiser.  Be there, May 28, 2015!

 

Invitation Comedy NIght

 

Expanded Access Programs, the critical need

February 3-4, 2015 Philadelphia, PA  CBI's Expanded Access Programs Conference.

http://www.cbinet.com/conference/pc15193 I'm honored to be invited to represent the experienced patient's voice and speak at this important conference about the critical need for Expanded Access in the emerging molecular level Personalized Medicine arena.

"Recent legislation, introduced just before the New Year, stands to dramatically reform the requirements of pharmaceutical and biotech manufacturers to offer compassionate use and expanded access programs. For companies whose drug is granted “Breakthrough,” “Fast Track” or “Qualified Infectious Disease Product”designation, it is critical that they understand the sweeping implications and to prepare now! Never has this meeting been more timely or critical.

The CURE Act is in the U.S. House of Representatives and intends to require that these drugs have a publicly available corporate expanded access policy for the compassionate use of the drug. This includes, but not limited to, designated point person, robust procedures, specific criteria for enrollment and policies for denials. Expect too the formation of an “Expanded Access Task Force” and upcoming formalization of the FDA’s May 2013 guidance, as the focus on Expanded Access Programs is mounting with the CURE Act".

On the Road Again

I've learned that there's a better chance that my Facebook and Twitter message could get picked up from this blog.

So, I'm going to give it a try.

Honored to be invited to speak at Partnerships in Clinical Trials in Barcelona, Spain encouraging anyone diagnosed with cancer to explore emerging treatment options in Research. http://www.informa-ls.com/event/PCT2014

 — at Boston Logan International Airport.

Cancer can make you "wicked smaht"

If you have a "not yet curable" cancer or if you're in a long-term treatment plan, .... you'll enhance your vocabulary, big time.   In the Boston area we say you'll become "wicked smaht".  Here's an infusion..

Dana Farber celebrates Dr. Martin Luther King, 50th Anniversary, Civil Rights Act

Dana Farber remembers Martin Luther King, celebrates the 50th Anniversary of the Civil Rights Act of 1964

I knew this would be no ordinary cultural observance when at the opening, this cheerful coterie began to perfectly sing “Lift Ev’ry Voice and Sing”  It was like listening to a mastered recording from the Harlem Gospel Choir.  Ok there were a few pros like actor/singer Cheryl Adamick of New Dimension Church of Providence, RI.  Seemed everyone knew every word and every note... except me.  Click to read on please.

What role will Companion Diagnostics (CDx) play in the future

 

Can this happen to you? You bet it can, so you better watch it. Step Therapy!

Ok, so I hooked you into reading this with that scary title.  But it can happen to you, might have already.  It goes like this.  Your doctor prescribes a medication, you go to the pharmacy to get it filled, or try to fulfill on line and you're shot down.  Sorry, your insurance company ....   Please read on...

Advocates, prepare if you expect to be credible and collaborate to be effective

I’m inspired by social media friends (my peeps) who diligently and regularly contribute meaningful chatter to Twitter, Facebook, Linkedin and Youtube.

I bet there are ten times as many of us who have the best of intentions but can’t find the time to post commentary, even if limited to 140 characters. My grammar school English teacher would be impressed; she taught use few words, make your point and make it interesting. She’d say, your paragraphs are much too long and your sentences show a lack of vocabulary. Ouch. As I write, I still feel her presence looking over my shoulder, “tsk, tsk, tsk”. And I’m reluctant to hit <enter> on the keyboard.

I think about my dear readers. Who are these people? “Nobody bats a thousand”, is meaningful to baseball fans but meaningless to my English-speaking friends in England. Opps, can’t type that. There are special rules of engagement in social media circles too. I thought “re-tweeting” was copying something original, copying a comment that someone had previously written, until chemobrainfog told me re-tweeting is the highest form of flattery. Yeah, but what if my peeps had already seen the original message? AnneMarie said, Jack, the original author will be flattered and might possibly “like” you. Why wouldn’t they like me? Well, it’s not automatic, she said.

In Research Advocate, Healthcare, #hcsm circles I’m amazed to see how many very bright oncologists and physicians contribute to “the cause” by way of social media. I was blown away at the Tweetup at the recent ASCO Annual Meeting in Chicago when I received “be sure to join us for the Tweetup in room 415”. Assuming a Tweetup was some kind of high-speed interactive tweeting exercise, much like high-speed dating I sat comfortably iPad in hand, waiting for the e-festivities to begin until I noticed a colleague running out saying, see you at the Tweetup. I reread the original Tweet, room 415. Ohmygosh, this is a real-world event, not a virtual, on-line meeting. I ran.

If I mention any of the “rock stars” that attended this tweetup will Doctor Smith get into trouble because he was supposed to be playing golf that Wednesday afternoon rather than hanging out with some of the best and brightest at an #smhc function? Ah, no confidentiality. I get conflicting messages: my peeps say, you must tweet, like, and link more often. My brain says, but don’t hit the <enter> key. I must be too busy because I’m too busy.

 

Oncology Conferences ASCO AACR DIA PMC

I’ve been busy attending healthcare conferences such as American Association for Cancer Research, American Society of Clinical Oncology and Drug Information Association in 2013. Look at some of the great educational material in the above photo accumulated by mid-year. I’m told these are the best conferences at which you’ll find your best opportunities to build a network of good contacts “in the biz”. I’ve always liked networking, collecting business cards and more important, collecting new friends. Many go way back; some well before email. I carefully write comments on the back of each card so I’ll remember. When I get home, I scan the cards into my Contacts. Often, I’ll see a face pop up from LinkedIn or wherever. Ah yes, I remember you. I make a concerted effort to send a hello message to people whom I find particularly interesting. More work, less time to tweet. BTW, if I haven’t sent you an email hello, it’s probably because I’m too busy. If you’re reading this, you’re interesting!

Why so busy? I’m convinced that to be an effective, thoughtful, credible Research Advocate, we must get repeated infusions of education and new information. Our experience as patients and caregivers is incredibly valuable but can have far greater value when our information and perspective is based on correct, proven assumptions. How can I honestly recommend that patients seriously consider Clinical Trials as a possibly, safer, more effective treatment option when compared to some conventional chemotherapies especially when we consider what we’ve learned from genetics and genomics? They key word is credible. How can I help a patient who’s been diagnosed with a stage IV terminal cancer? How can I avoid getting in over my head?

In spite of all the complaining found in chat rooms, in social media, virtually all serious healthcare professionals, such as clinicians, oncologists, investigators, pharmacologists, and bioinfomaticists follow a proven, unemotional scientific process. They rarely mouth off or take a defensive position.  So most claims of wrong-doing go unanswered. 

Advocate with gas can and flameFrankly, I’m disappointed with many activist advocates found on-line. Some run into the room with a gasoline can, an open flame and shout, listen to me.  No, thanks I have to check with legal.

The insults, lack of etiquette, focus on their particular (bad) treatment cause them to be seen as a negative force for change rather than exploring positive moves. Most unfortunate is the oft-accepted unbridled bashing of healthcare providers, payers and pharmaceuticals the most regulated of all industries. Patient advocates can be more effective by embracing an informed, collaborative approach rather than confrontation. Do you agree or disagree?  Your thoughts?

Hope to see you at an upcoming conference.

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