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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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Dana Farber Cancer Institute - special sauce, volunteers

 

Dana Farber special sauceI attended Dana Farber Cancer Institute’s (DFCI) annual volunteer recognition dinner last night, my first.  Only recently was I accepted into DFCI’s Patient Family Advisory Council, (PFAC) so I’m now an official volunteer, ID-badge and more.  As it name implies, PFAC is a council of patients, families and caregivers whose voice is sought after throughout this special institution. It’s an honor to have been selected and now serve.   This is only one of many volunteer units that add meaningful value to DFCI.  PFAC provides a unique patient (customer) voice and insight into all aspects of running a productive, healthy healthcare institution.   Study areas include moving into new facility, minimizing wait time, patient education, opportunities to save unnecessary expenses, to identify areas of waste and opportunities for improvement and more. 

In his address last night, Dana Farber President Edward J. Benz, MD spoke about the special sauce that helps the institution earn such high marks for cancer research and patient and family care.  He said, the special sauce’s primary ingredients are the volunteers who provide an incredible level of patient support and kindness throughout the institution.  As a long-time active patient in treatment at DCFI I’ve been lucky to observe why DFCI is such a special place with special, caring people from parking lot attendants to the army of outstanding researchers, investigators, nurses, physicians and other medical pros.  Last night, I was elated to reconnect with one of my favorite volunteers, Ron a retired patent attorney from Digital Equipment Corporation.  Week after week, month after month, for a few years when in and out of treatment, Ron would come see me each time I sat in the infusion chair.  He made the visit to the infusion room seem very routine even on those days when I was very sick or shhh, scared.   He has a nice caring, calming, confident effect, man to man.   

We took up our conversation where we had left off, discussing our grown children and grandchildren, politics, the economy and more.  Ron cautioned me to be sure to let others know “you’re OK”.  “One of the problems with volunteering is we don’t know what happens to the patients for whom we care.   Sometimes we wonder… but more often it’s a great joy to see a cheerful, healthy post-treatment patient”.  

If you’ve been in treatment at DFCI, you know what I mean by having an extended medical family on your side.  It’s serious business, because cancer is serious, don’t mess with it.  Earning the right and attendant joy of becoming a volunteer at Dana Farber is also serious business.  Without giving away any secrets, the institute is careful about who will be given this opportunity and who can fulfill the obligation to provide such a high level of care, empathy and going the extra mile for patients and family.  The volunteer team is a well-managed, disciplined, fun group.   Funny how when you care for and focus on others, your own troubles don’t seem so bad.  Do you agree? 

For more info, please see  http://www.dana-farber.org/How-to-Help/Volunteer.aspx

American Association for Cancer Research AACR Scientist-Survivor Program Rally for Medical Research

Well, it's about time that I posted some fun videos produced from photos I took at the AACR Scientist Survivor Program in Washington DC.  The first video presents some great photos of AACR-SSP members doing some gentle Congressional arm twisting at the Rally for Medical Research. I'll post the second soon.  No matter which side of the aisle you may lean politically, there is no meaningful opposition for increased funding for Medical Research. 

Now more than ever Congress has to hear our voices loudly and clearly about this common sense legislation.  It is fiscally responsible as this kind of research has repeatedly generated a great return on investment.  New technology can dramatically reduce the cost of healthcare. Perhaps the most meaningful benefit coming from this investment is the move away from empirical therapy (keep trying therapy until you find what works) to genomics-based therapy (undergo genetics assessment before treatment), the promise of Personalized Medicine.   It's no secret that healthcare spending is out of control and can't be sustained at this level.   Smart investments in Medical Research is the best way to attack this problem now. 

A good friend once reminded me, nothing happens to anyone until it happens to you.  Cancer patients that have taken up the cause of Research Advocacy well understand the urgent and compassionate need to increase funding here.

Check my first video on YouTube click this:

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American Association of Cancer Research Scientist-Survivor Program

I recently completed the AACR Scientist - Survivor Program, an incredible opportunity to connect with some of the brightest minds in oncology research and care.  The meeting presents the most timely and significant research in scientific disciplines. Tech and medical leaders from around the world network over five days to announce and objectively look at latest progress in cancer diagnostics, detection, care and prevention.  Audience includes some of the most accomplished advocates, scientists, physicians, nurses, students, and other healthcare professionals committed to wiping out cancer.

The Scientist - Survivor Program gives survivors and patient advocates an early look at recent developments and an ideal venue at which to meet many prominent researchers from around the world.  I'm determined to help other patients and their caregivers understand more of the technical aspects of their cancer, treatment options and cure.... to help prepare patients to ask the right questions about their care.  Being an e-Patient, empowered, educated, enabled, and engaged directly impacts patients' ability to survive this dreaded disease.  Click for more details. 

Education Network to Advance Clinical Trials

 

It's no secret that I'm a big advocate encouraging cancer patients to seriously consider Clinical Trials as a safe and effective treatment option for cancer, particular incurable blood cancers.  There is much evidence that supports the theory that many of the emerging targeting biologic and small molecule agents can be safer than many conventional chemotherapies including alkylating agents and nucleoside analogs.  There are far too many myths and misconceptions surrounding Clinical Trials.  Accordingly, there is an urgent need to educate physicians, patients and caregivers about the current state of the art.   I'm working with the Education Network to Advance Cancer Clinical Trials as a webcast speaker.  Check out www.enaact.org for more info.  

e-Patient Perspective on ASH Conference Highlights

e-Patient perspective on some Highlights of ASH Conference.

What’s the best way to pick up the most relevant blood cancer info from the American Society for Hematology (ASH) without attending the full mega-conference in Atlanta?   I attended the one-day ASH 2012 Highlights conference sponsored by Dana Farber/Brigham & Women’s, Harvard Medical School and the Leukemia & Lymphoma Society this weekend. ...I was surprised that everyone assumed I was a doctor.  The courtesies are nice.  Ok, so I look the part.  It was later that I discovered my badge included the venerable ,MD following my name.  

This was a great educational opportunity, for this e-Patient.  ...  I’m generally not afraid to speak up in the healthcare arena, but as I was a paying guest, I participated in listen-only mode...  The faculty represent the home team for me. Each physician is associated with Dana Farber Cancer Institute and Brigham & Women’s Hospital where I’ve been treated exceptionally well for the past six years.

Dr. Robert Soiffer Chief, Hematologic Malignancies launched the program at 8AM and kept the pace moving smoothly throughout the day; he is a strong advocate and driving force with the sponsors of this program.  With a little gentle arm twisting from my dear friend Lynne Graziano Morin of Leukemia & Lymphoma Society  Dr. Soiffer gave a quick update on passage of the Oral Chemotherapy Parity bill just passed in this state, ... it will become even more important for blood cancer patients that are relying on pill form treatment options.  He then began the introductions.  Wow!

Dr. Ann LaCasce, a bright oncologist who presented a list of current and latest Lymphoma treatment options including Brentuximab, Lenaldomide, ASCT (Transplant)... 

Dr. Dan De Angelo is not only one of the brightest oncologist in Myeloma circles, I believe he gives the best bone marrow biopsy in the business.  ...a great update on Acute Lymphoblastic Leukemia (ALL) and Chronic Myeloid Leukemia (CML) ... he summarized by saying the field has exploded with new options.

Richard Stone, MD at the Adult Leukemia Program at DFCI described many ways to get Long Term, Disease Free Survival (LT DFT) from Acute Promyelocytic Leukemia and Acute Myeloid Leukemia.

David Steensma, MD presentation's on Myeloproliferative Neoplams and Myelodyplastic Syndrome...

Dr. Jean Connors, Focus on Platelet and Novel Oral Anticoagulants

Dr. Jacob Laubach, Multiple Myeloma Update presented a well defined Myeloma Treatment Algorithm...

Dr. Jennifer Brown, Director of the Chronic Lymphocytic Leukemia (CLL) center at DFCI gave perhaps the most complex of the presentations, but for an oncologist this might be the most useful information given this day. 

The final presentation of the day on Stem Cell Transplantation came from Dr. Corey Cutler. He described advances for older individuals with Acute Leukemia, Myelodysplastic Syndrome.

Summary:  Click Read More below... to help trigger some research you might want to do.  As most readers of this are “e-Patients”, I’m willing to risk providing my personal layman’s commentary, color and some comedy. e-Patients are more willing to dig deeper and do research that is more appropriate for their circumstances.    For the few, better informed physicians and other medical professionals that read this, I’d appreciate any commentary or corrections or amplification that might help my dear readers.  Thanks.

If you'd rather a .pdf copy of my comments click DFCI-LLS-ASH-Highlights

Jack Whelan

LLS Team in Training - Boston Intro breakfast, Jan 9th, at 60 South Street

If you've ever thought about running the Boston marathon ... if you'd like to explore your options while enjoying a light breakfast, downtown Boston on Wednesday January 9, 2013 check this invitation:

http://jack-whelan.com/files/TNT-Boston-01-09-2013.pdf

I'll be doing a little gentle arm twisting talk with humor along with my friends at Leukemia & Lymphoma Society. A special invite to my social media peeps! 

Oral Chemo Parity Legislation, almost passed. It's now up to the Governor

State lawmakers need to be educated about the concerns of all patients especially in light of the Federal and State government getting more involved in our healthcare.  For almost a year, I've been working with ... public advocacy organizations walking the halls of the Commonwealth of Massachusetts State House. ...at the eleventh hour, we were nuked by some legislator's arm twisting who got the bill modified which essentially neutralized it.  But on Monday, December 31, the last day of this extended Legislative Session, our professional lobbying team got word that the BillS2363, has passed the House and Senate!

This means that cancer patients that receive chemotherapy in "pill form" rather than infusion (intravenous IV) will be covered at 100% ... Please click Read More for more and post your comments about this.  Thx. 

Jack 

At PMC, I had the urge to go to the lecturn and grab the mike...

Last week I attended the 8th Annual Personalized Medicine Conference at Harvard Medical School in Boston... where some of the best minds explored the promise of Personalized Medicine. Not enough ePatients yet, but that will change.

I’ll admit that any cancer patient can lose his objectivity about those who develop therapies that keep you alive. As I listened to the brilliant presenters describe their struggles and successes in the fields of genetics and genomics with a distinct focus on ‘the patient’, I had the urge to go to the lectern, grab the microphone and speak...  When your Progression Free Survival (PFS), the end-point in managing a rare incurable blood cancer is directly attributable to a specific targeted therapy developed by a dedicated coterie of researchers and clinicians, you will lose some objectivity.

Read on for The best comment heard at the Personalized Medicine Conference and some highlights. 

Patient and Healthcare Advocacy, NAHAC and APHA resources

Before beginning treatments for blood cancer, I rarely thought about healthcare, let alone patient advocacy.  My health was great, no issues at all.  I took only 81mg of baby aspirin/day, an effective drug for the prevention of clots and potential cardiovascular events.  That was March 2007 BC, (before cancer).  That all changed in April 2007 AD (after diagnosis).  As I sat in the infusion room with other patients, I observed all kinds of people needing help.  What really “killed me” as they say....  

Who’s going to help that very sick person whose brain is working at half capacity during treatment?  A patient advocate.

Who’s going tp help the old timer get around?  A patient advocate.  

Who’s going to help that single, working Mom caring for her son battling Leukemia?  A patient advocate.     

.... One of the best sources of information concerning professional patient and healthcare advocates is the National Association of Healthcare Advocacy Consultants (NAHAC) who held their 4th Annual Conference in Boston last week.  Hurricane Sandy didn’t interfere .... Wow, blew me away....   Then I met Trisha from APHA, back to reality.  

Be Your Own Advocate - Clinical Trials and Emerging Therapies

If you’re in the Boston area, come hear me speak on November 13th.  Check this

When given the opportunity to speak to patients and caregivers, one of my favorite topics is the patient’s responsibility to be empowered and proactive about his or her care.   Yes, responsibility -that means getting access to sufficient information such as your medical records and reports so that you can make better decisions.    The emerging ePatient movement, driven by a group of like-minded patients, caregivers and medical professionals is having an incredibly positive effect.  The old order in which physicians assumed a patriarchal role is gradually collapsing.  The sooner the better.   I believe being an empowered and educated patients is not only your responsibility, it’s your obligation.  

.....An empowered patient will get the information needed to clearly understand some valuable reports such as yourComplete Blood Count (CBC) blood tests.  She will know what these numbers and flags will mean.  If you understand white blood cell (WBC) counts (leukocytes), red blood cell (RBC) counts(erythrocytes) and platelets in the blood,  you can begin to be better prepared to ask questions.  Hey Doc, why have my platelets dropped (crashed) so low?  What is happening to me and why?  Is that why I’m bruising so easily? 

..... I’m speaking at a Leukemia & Lymphoma Society meeting next week.  Check the calendar here if you’re in the Boston area.  I’m presenting two of my favorite topics centered on being your own Advocate, Clinical Trials and Emerging Therapies. 

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