August 2014
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Amping Up Community Dialogue

Patients connecting at a recent in-person forum

Patients connecting at a recent in-person forum

It has become abundantly clear that patients with cancer find great value in knowing they are not alone and having active dialogue with other patients. I know it helped me back in 1996 when I was diagnosed with chronic lymphocytic leukemia and continues to help me today. But I am in a great spot in communications and get to meet other patients all the time. Many others hardly know anyone else. That’s why we are stepping up our efforts to connect Patient Power audiences with each other, per condition. We are doing this in several ways:

1. We are producing more in-person town meetings and building in extra time during these Saturday or Sunday educational gatherings where patients and caregivers can meet in sub-groups. Coming up is one meeting in Barcelona, two meetings in Houston in November and two in Denver. Stay tuned for info.

2. We have just launched a new partnership with HealthUnlocked from London and their condition-specific communities where patient-to-patient and caregiver-to-caregiver discussions continue 24/7. You can find these today in our CLL Center and MPN Center. Coming soon will be similar activity in myeloma, and more centers after that.

3. We are also continuing our partnerships with others who have active communities including myelomacrowd.org, patientslikeme.com and others.

4. We are establishing more condition-specific pages on Facebook, for example our new one in myeloma and remain a regular active contributor and listener in social media.

5. The “Don’t Walk Alone™” mobile app is also in development to assist you with a just-in-time connection wherever you are in your cancer journey.

For me, it’s all about us talking to each other as members of an open community. There are no borders. Some people happen to be patients, some are caregivers, some are doctors and nurses and researchers, and some are at advocacy groups. We are all in it together. When we talk to each other actively, and with mutual respect, we can work harder and more efficiently towards cures and higher quality of lives in the meantime. Please “join the conversation” and also always let us know how we can do better!

And, one more thing, as we try to perfect what we do for you, we just launched a new survey to get your feedback. Please take a few minutes to let us know what you think. It helps us enormously to help you.

Wishing you and your family the best of health!

Andrew

CLL and Lymphoma Drug Approvals: Kudos to the FDA

Dr. Richard Pazdur, director of the Food and Drug Administration’s cancer drug office

I gotta be fair to Dr. Richard Pazdur, the king of cancer drug approvals (or rejections) at the FDA. I have been sharply critical of him in the years past when we have watched niche, but seemingly useful, proposed new drugs go [...]

Schmoozing with the Cancer Community

Do you know any Yiddish, the eastern European Jewish dialect? Words like chutzpah (audacity), schlep (haul or carry something heavy), and just maybe a third schmooze (talk intimately and cozily)?

You probably have heard these words before as the media uses them all the time. Now I am going to apply “schmooze” to cancer patients [...]

Holding an Estate Sale While You Are Still Alive

As you know, I am a two-time cancer survivor, having been diagnosed with chronic lymphocytic leukemia (CLL) in 1996 and myelofibrosis (MF) in 2011. Thankfully, the CLL remains in deep remission, and the symptoms of MF are well controlled with a new, targeted therapy, ruxolitinib. I am living a full life. Two years ago, my [...]

Andrew Schorr Reporting from EHA 2014

In this new video, Andrew Schorr is reporting in Milan at EHA 2014. The atmosphere is upbeat and positive with over 10,000 clinical people and researchers from all around the world, sharing information and latest advancements in the treatment of blood related cancers.

“Knowledge can be the best medicine of all.” – Andrew Schorr

[...]

A Tribute to AJ Halavacs

AJ Halavacs at Moffit Cancer Center in Tampa

 

By Carol Preston, CLL Advocate and Patient Power Contributor

AJ Halavacs of Fort Lauderdale, FL died unexpectedly earlier this month. Since learning of his death a few days ago, I have been shaken to my core.

I had met AJ only briefly on April 12 [...]

Anxiety or Hope? Drinking from the “Fire Hose” of Cancer News

Patient Power Host Carol Preston interviewing myeloma expert Dr. Tom Martin at ASCO 2014.

This is prime season for cancer news reporting. As I write this, we have a Patient Power team in Chicago at the annual meeting of ASCO, the American Society of Clinical Oncology. Media outlets from around the globe are there [...]

The Path to Living in the Moment

View along my 6-day camino with new friends in France

Last year, my wife, Esther, and my 20-year-old-daughter, Ruthie, took 15 days and walked along Spain’s famous “Camino de Santiago de Compostella.” This is the walk Catholic pilgrims have taken for hundreds of years from France, across Spain, and to the Atlantic coast. These [...]

The Gap Between Powerful Patients and the Organizations that Should Support Them

Patients meeting one another at an in-person event produced by Patient Power for the Patient Empowerment Network and City of Hope near Los Angeles

As you know, I beat the drum for what’s becoming a “patient empowerment movement,” especially among cancer patients. And more and more of us are living longer and want to [...]

How Suffering May Change You for the Better

I was reading an opinion piece by David Brooks in today’s New York Times and it clarified for me a theme I wanted to write about. Brooks wrote about the transformative effect of suffering in an age where everyone is pursuing happiness. I got to thinking about the suffering that comes with illness. When it [...]