July 2014
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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 down in flames at his hands. I was worried. But now it seems a combination of better science, meticulous studies from drug companies, great support from patients and advocates, and yes, a kindler/gentler Dr. Pazdur and the FDA, has all led to quicker drug approvals – today in CLL/SLL and follicular lymphoma.

The latest news is about Gilead Science’s new drug – what we have been calling idelalisib and Gilead has named Zydelig®. We have many previous interviews that discuss its promise for patients including one about CLL and one about lymphoma. Now, in these conditions and one other, SLL, patients have an expanding array of treatment options. If one doesn’t work out for them or have lasting benefit, there is another treatment to try that works in a different way. And more are coming. Dr. Jeff Sharman outlined this for us months ago.

Happily, the FDA, with its grants of “breakthrough status” seems to be “with the program” in helping patients get quicker access to life-extending and life-saving new drugs. Thanks to them and to all of us who have put pressure on them to end being somewhat of a barrier in the past. Dr. Pazdur felt it was in name of protecting patient safety and ensuring effectiveness, but I haven’t always been so sure.

The bottom line is we blood cancer patients (I have two blood-related cancers, CLL and myelofibrosis) have expanding hope with approved new drugs, and others coming where the FDA sun may shine of them before long. For our friends in Europe, I pray the authorities there will soon follow suit and that the governments that have to pay for the drugs will write the checks. And, while we are discussing money, one point about cost is an aside here to Gilead and their peers in the pharmaceutical industry: thank you for your innovation, thank you for running the FDA gauntlet through approval, and yes, provide a return on investment to your shareholders. But don’t be greedy. Let’s work together, so everyone who needs breakthrough drugs can get them, and we don’t break the healthcare bank in the process.

By the way, as I write this, we have a CLL patient town meeting in two days here in Seattle. You can be sure the new approval will be discussed live in-person and on Twitter (#CLLSEA). Join us and look for a raft of new video discussions for these conditions coming at an accelerated pace. If the FDA can accelerate, so can Patient Power!

Send us your questions anytime at comments@patientpower.info.

Wishing you and your family the best of health!

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 [...]

On the Road Again for Cancer Connections

Over the next couple of weeks I will be traveling thousands of miles on long-distance flights to connect with other patients, in person. It can be exhausting but it’s energizing too. Like any of us with a compromised immune system (I keep getting chest or sinus infections!) there can be a price to pay for [...]