Thursday, September 27, 2012

DID YOU KNOW THAT LEGENDARY SURFER GIRL "GIDGET" IS A REAL PERSON?


                                                                                
Just about everyone knows the iconic story of “Gidget,” the California teen who rode the waves long before The Beach Boys sang "Surfer Girl." But did you know that Gidget is a real person? It's true. That's her with the longboard in the picture above.

It was the summer of ’56, and surfing was just becoming the rage on So-Cal's beaches. At the time, it was virtually unthinkable for a girl to surf.

Then along came Kathy Kohner, a spunky 15-year-old from Brentwood who bravely, defiantly stood up on a surfboard at Malibu's Surfrider Beach with some of the boys from her neighborhood.

The buys surfed, Kathy didn’t, but she convinced them to teach her. The guys teased her mercilessly and started calling her “Gidget” (short for “girl midget”), but she became a good surfer, eventually won their respect, and became one of the first girls to hang ten at Malibu.

When she told the story to her screenwriter father Frederick Kohner, he wrote a novel he titled "Gidget: The Little Girl With Big Dreams."

The rest, of course, is history. The 1957 book sold more than 500,000 copies, and the 1959 movie "Gidget" starring Sandra Dee in the title role, James Darren as Moondoggie, and Cliff Robertson as Kahoona, was a huge hit.

The film immortalized Gidget as part of California’s surf heritage and as a role model for young girls everywhere. Girl power, indeed! The Gidget phenomenon, which spawned a TV series with a young Sally Field and four subsequent movies, helped launch the sport of surfing. 

It sparked an American beach-culture explosion (the Frankie Avalon-Annette Funicello movies, "EndlessSummer," the Beach Boys, Jan & Dean, and more).

The real Gidget, Kathy Kohner Zuckerman, is north of 70 now and has several grandkids, but she still lives close to Malibu, and she’s just as gregarious and energetic as she must have been more than 55 years ago when she won Moondoggie's heart. 

Considered a genuine pioneer, especially by young female surfers who meet her, Zuckerman still surfs now and then - though her real surfing days are behind her.

"Before they meet me, most people don’t know Gidget is a real person," Zuckerman told me a while back. "I'm kind of an elder stateswoman now, but I still feel at home on the beach with the other surfers. It's really true what they say, you know: once a surfer, always a surfer."

Zuckerman, who hung out with such legendary surfers as Miki Dora, Mickey Munoz, Dewey Weber, Tom Morey, and Nat Young, was named No. 7 in Surfer Magazine's 25 Most Influential People in Surfing, and was a 2011 inductee into the Surfing Walk of Fame in Huntington Beach in the Woman of the Year category. 

A documentary on Zuckerman's life titled "Accidental Icon: The Real Gidget," by Emmy-winning television segment producer Brian Gillogly, was released last year on DVD. It got rave reviews.

The movie (Facebook page here) features interviews with several current pro surfers and Academy Award-winners Sally Field and the late Cliff Robertson, and narration by Jorja Fox (from CSI). 

Zuckerman, who still loves being in or near the water and does lots of public speaking, is the "Ambassador of Aloha" at Duke's Restaurant in Malibu, where on Tuesday evenings and Sundays during brunch she greets customers and shares her life story.

By the way, she didn't marry Moondoggie, she married an English Professor instead who’s now the retired dean of Los Angeles Valley College. 

But Moondoggie is real. His name is Bill Jensen, he’s in his mid 70s and living in Taos, New Mexico. He and Gidget, er, Kathy, still keep in touch.

Wednesday, September 26, 2012

ANOTHER NEW LYMPHOMA DRUG ON THE HORIZON?

There's more potentially good news from Cell Therapeutics (CTI) for lymphoma patients who've relapsed after multiple treatments and are running out of treatment options.

This week, the Seattle-based drug company announced that a Phase 1 clinical trial trial of its JAK2 inhibitor drug Pacritinib (or SB1518) for patients with any type of Hodgkin's or non-Hodgkin's lymphoma, except Burkitt's or CNS lymphoma, has yielded positive results for patients who had relapsed following a median of five prior therapies. 
                       
The trial, whose results were published this month in the Journal of Clinical Oncology, showed encouraging anti-tumor ability in half of the trial's 34 patients, according to a report in The Wall Street Journal's MarketWatch.

What I like most about this new treatment, in addition to the fact that half the patients in the study saw a reduction in tumor size between 4 percent and 70 percent, is its evidently low toxicity compared to other JAK inhibitors.

Patients reported only mild to moderate gastrointestinal (GI) side effects - even at high doses. I'm always on the lookout for less toxic treatments for patients - this one's worth keeping an eye on.


This news comes just weeks after CTI's launch of another lymphoma drug, Pixvuri, in Europe. A clinical trial of Pixvuri, a treatment for non-Hodgkin's B-cell lymphomas, is underway in the United States and is still open for patients. 

For more information about that trial you can click here


As for
the Pacritinib trial, the results suggest this treatment has potential therapeutic value "despite the extensive degree of prior therapy and refractory nature of the disease among the patients who were enrolled in this trial," said Steven E. Brenner, CTI's chief medical officer, in a statement on the company's website.

Pacritinib is an oral, once-a-day treatment called a tyrosine kinase inhibitor that works against mutations in kinases that are directly related to the development of a variety of blood-related cancers including lymphoma, myeloproliferative disorders, and leukemia.

Pacritinib has already demonstrated encouraging results in phase 1 and 2 studies for patients with myelofibrosis. A phase 3 study is planned.


Tuesday, September 25, 2012

HOW ARE OUR VETERANS REALLY DOING?

OK, let's cut to the chase: How are America's veterans really doing overall? While that question has no simple answer, what I can say is that there are a number of positives to share - but at least one very large negative.

In a briefing last week, the Department of Veterans Affairs (VA) candidly shared with the House Veterans’ Affairs Committee what it considers its greatest successes as well as its most urgent problems. 

Attending the meeting were some dedicated staffers from Bergmann & Moore, a Maryland law firm that focuses solely on veterans' disability cases. 

As a service to veterans and their loved ones, the firm summarized on its website the most important announcements from this very important but lamentably under-reported Congressional hearing. 

I guess most reporters right now are just too concerned with the presidential race to, uh, talk about the actual issues.



But I digress. Bergmann & Moore notes that, with a staff of 320,000 and an annual budget of $140 billion, "VA continues expanding to meet the challenges of an aging Vietnam War veteran population as well as a surge in growth among Gulf War, Afghanistan War, and Iraq War veterans."

But is VA indeed meeting these challenges?  Deputy Secretary W. Scott Gould, who testified on behalf of VA, told the committee that the agency now provides services to more than nine million veterans out of the 22 million veterans living in the United States. 

That's an undeniably astounding number of people to care for. VA in fact remains the second largest government bureaucracy behind the Department of Defense (DoD).
 
Among the agency's biggest successes highlighted at the hearing is the Post-9/11 GI Bill education benefits program enacted in 2008, which has been a hugely successful program for many veterans and their families.

Another positive mentioned at the meeting that hasn't gotten much national media play is how much assistance VA has provided to veterans since the housing bubble burst in 2008.

“VA has helped more than 119,000, or 82.5 percent of, defaulted VA borrowers avoid foreclosure,” said Gould in a written statement to the committee.

However, the albatross otherwise known as the VA’s disability claims crisis remains the agency's number one unresolved challenge. And it virtually overshadows the successes mentioned above.

As Bergmann & Moore points out, "More than 67 percent of claims now wait more than 125 days, with an error rate of 30 percent."

That's unacceptable, and everyone knows it. 

In 2008, fewer than 900,000 veterans filed disability claims. In 2011, claims filed rose to 1.3 million, and VA expects to process 1.2 million claims this year, reports Bergmann & Moore.  

VA’s challenge is of course due in large part to the enormous increase in post-traumatic stress disorder claims. From 2008 to 2012, the number of veterans compensated for PTSD increased by a whopping 64 percent. 

PTSD, along with Traumatic Brain Injury (TBI), are the signature (but often invisible) wounds of the Iraq and Afghanistan Wars.

The hope is that the funding increases and improvements in technology will reduce the inexcusably large disability claims backlog. 

But as Bergmann & Moore points out, "VA has a long way to go to reach its goals of having no claims pending more than 125 days and having a two percent error rate by 2015. "

A long way to go, indeed. But at least this ship is no longer sinking. The agency finally appears to be headed in the right direction. But we shall see.






Monday, September 24, 2012

LYMPHOMA ON THE RISE IN CHINA

How will the most populated nation on earth deal with the rising number of lymphoma patients? In China, a country with more than 1.3 billion people, the incidence of lymphoma is rising by four percent a year. 

A new epidemiology survey shows that lymphoma - non-Hodgkin's and Hodgkin's - has become the ninth most common cancer among Chinese males on the mainland, according to a report in China Daily.


That's still not quite as high, percentage-wise, as the United States, where lymphoma is the seventh most common cancer in males as well as females. But it is on the increase, and that's cause for concern.

Researchers in China are seeing an especially significant increase in Hodgkin's and non-Hodgkin's lymphoma among young people in urban areas. 

And that will unfortunately continue to rise because of that country's quickly changing lifestyle and increasing pollution, Zhu Jun, a leading lymphoma specialist at Beijing Cancer Hospital, tells China Daily.

To better guide and standardize clinical treatment of the disease, a clinical diagnosis and treatment guideline on lymphoma was issued jointly by the Chinese Society of Hematology under the Chinese Medical Association and the Chinese Anti-Cancer Association late last year.

"With timely and proper treatment, nearly half of the sufferers can be cured," Zhu told China Daily.

To help raise public awareness, a two-month campaign scheduled to tour 15 Chinese cities was launched this month offering people free consultations.

China still deals with lymphoma with a combination of Traditional Chinese Medicine methods and more modern Western treatments.

I've said many times since I was diagnosed with stage IV non-Hodgkin's lymphoma that we can learn a lot from the Chinese - just as they can learn a lot from us. 

I even seriously considered traveling to China when my cancer recurred the first time in 1999. Thankfully, I was saved by Western medicine.

But Chinese herbs, for example, have shown to be very effective for some patients in boosting immune system activity and fighting lymphoma. 

And then there's acupuncture, which of course is a part of the ancient Chinese medical approach. According to Everyday Health, acupuncture is a scientifically proven way of relieving many lymphoma symptoms and side effects of treatment. 

That includes everything from pain, fatigue, depression and nausea to stomach discomfort, immunity levels and more.

For me, battling lymphoma has always been about loading up your arsenal with as many weapons as possible. And that means culling the best from the East and the West. 

The combined use of Western and Chinese medicines in the treatment of lymphoma, and all cancers, bears further investigation in the United States.

Thursday, September 20, 2012

VETERANS EMBRACE LIFE AT SUMMER SPORTS CLINIC THIS WEEK IN SAN DIEGO

I've been openly critical of the Department of Veterans Affairs (VA) for its massive backlog of disability claims, entrenched bureaucracy, and other problems. The VA has a long, long way to go.

But that doesn't mean I don't recognize that there are many people at VA who are dedicated to veterans, and many programs that help veterans survive and thrive.

One of my favorite such programs, which is going on right now here in my hometown of San Diego, is the National Veterans Summer Sports Clinic.

The clinic, which began Sunday and runs all week, offers veterans with serious physical and psychological wounds a week of cycling, surfing, sailing, kayaking and more in and around the beaches and bays of beautiful San Diego. 


Veterans also have the opportunity to meet with paralympic hopefuls and train at the U.S. Olympic Training Center in Chula Vista, just south of San Diego.

“The Summer Sports Clinic is proof of VA’s commitment to rehabilitation to improve quality of life for veterans with disabilities,” VA Secretary Eric Shinseki said in a statement. “The clinic helps our most severely injured veterans gain physical and mental confidence.”

Not sure I can agree that this one event is proof of VA's overall commitment to rehabilitation. Not with nearly one million vets still waiting on their disability claims.

But the clinic, which is open to veterans who've been seriously wounded in the last six years, is nonetheless a wonderful way to show our wounded warriors that they can successfully adapt to their new lives after an injury, continue to participate in many of the activities they enjoyed in the past – and even try new things.

Veterans who participate in this clinic suffer from a variety of injuries ranging from traumatic brain injury to spinal cord injury or loss of limb. The goal of the is not just to help them strengthen their bodies but also to help them overcome and improve their psychological health and self-esteem.

In a report from VA's website, a number of veterans and their loved ones talked about their positive experiences at the clinic. U.S. Army veteran Andrew Chavez, for example, was able to get up on his knees on this first attempt at surfing.

“We were on the beach watching,” Steve Chavez, Andrew's brother and caregiver, said on the VA site. “And my brother got up on his knees and just thrust his arms into the air. He fell down after that, but I was so happy for him. I'll never forget it. Thanks to VA and the clinic, my brother wants to do more surfing."

VA’s Adaptive Sports team is covering the event, and you can check out VA's Flickr photo set, which will be updated daily (the above photo is from this site). If you’re on Twitter, follow @VAAdaptiveSport and the #NVSSC hashtag.

To give you an idea of what this clinic is all about, here are more than 200 photos from last year’s event.

This is one program VA does right. My only criticism is that it should be greatly expanded. 

For more information contact the event's director, Tristan Heaton, at 858-642-6426.

Wednesday, September 19, 2012

California's Tennis Mecca: La Quinta Resort & Club


If you love tennis like I do, but the idea of playing a couple sets then eating strawberries and cream sounds a lot more appealing in the warm, sunny confines of the So-Cal desert than in the damp, hazy climes of South London, then La Quinta Resort & Club calls your name. 

A tennis lover’s oasis, La Quinta (pronounced la-KEEN-ta), which is consistently rated among the "Top 10" tennis facilities in the nation by Tennis Magazine, has been holding court as the premiere public tennis club in the Coachella Valley (La Quinta, Palm Springs, Rancho Mirage, etc.) for decades.

The spectacularly landscaped grounds at La Quinta, which feature tens of thousands of flowers and trees, are not quite as hallowed as Wimbledon. But the weather’s better. And so’s the view. 

Nestled majestically against the Santa Rosa Mountains, La Quinta is a feast for tennis gourmets, who enjoy the fully stocked pro shop, the awesome sunken center court, and the Olympic-sized pool and spa (just recently upgraded), all of which surround the historic Clubhouse, which was once a private estate. 


While the tennis facility offers immaculately maintained hard courts, you can also head over to the clay courts and do your best impression of Rafael Nadal dominating the French Open.

There are several United States Tennis Professional Association-certified teachers here who spread the gospel of tennis with joy and passion. Think Bud Collins, without the loud shirts. 


As a parent of a daughter who loves the game, I especially like that the pros at La Quinta are really great with kids, and they can help your game - whether you’re a beginner or a budding pro.

La Quinta is the crown jewel of this So-Cal desert region that has become a tennis player’s kingdom. 
Many of the world’s top players can be spotted warming up on La Quinta’s courts on the days they have a match at nearby Indian Wells. 


But La Quinta isn’t just for the professionals. It’s for everyone. You can choose from a variety of tournaments, for example. The emphasis here is on fun and participation - but you can get as competitive as you want. There's no shortage of 'A' players on these grounds to challenge you.


The tennis program here got underway in 1978 when a consortium of famed former players – Charlie Pasarell, Arthur Ashe, Stan Smith, Bob Lutz, Marty Riessen, Roscoe Tanner and Dennis Ralston – joined forces to create one of the premier tennis facilities in the country. 


In this age of extreme sports, tennis may not be as popular or trendy as it was in the 1970s and 1980s. But for those of you who know that there is still no better game on earth, La Quinta remains our Mecca.


And yes, the poolside bistro, which is just a lob shot from the courts, serves strawberries and cream.

Tuesday, September 18, 2012

HISTORIC LAWSUIT FOR VETERANS HEADED TO SUPREME COURT?

My trusted veteran sources tell me that we may soon know if Veterans for Common Sense v. Eric K. Shinseki, the historic lawsuit filed by veterans advocates against the Department of Veterans Affairs (VA) way back in 2007, will be heard by the Supreme Court.

As I reported in Newsweek/The Daily Beast, a federal appeals court in May voted 10-1 to dismiss the landmark suit, which in unprecedented fashion demands that Secretary Shinseki and his VA fix the department's broken mental healthcare system. 


The court ruled that only Congress or the President has the authority to direct changes on how veterans are treated. That decision overturned a 2–1 ruling last year by the same court, which concluded that the department’s “unchecked incompetence has gone on long enough." 

The first panel was right: the unchecked incompetence at VA has indeed gone on long enough.

Veterans advocates were naturally disappointed by the appeals court's subsequent ruling, but they're not giving up. There is still hope that the Supreme Court will hear the case

Supporters of the lawsuit say they're still fighting for it because far too many families of veterans committed suicide after facing delays and denials in VA medical care.  

Here's the final paragraph from the petition for a writ of certiorari to the Supreme Court, filed last week by the original plaintiffs, Veterans for Common Sense (VCS) and Veterans United for Truth (VUFT):

The Court should grant review now because any delay is at the expense of our nation’s veterans. Indeed, this case likely presents the only opportunity for this Court to intervene in time for the veterans of the Iraq and Afghanistan wars. Combat veterans are entitled to free health care from the VA for only 5 years after their service ends. If left unreviewed, the Ninth Circuit’s decision will condemn these veterans to suffer intolerable delays inherent in the VA system.


Paul Sullivan, a Gulf War vet and former executive director of VCS who now works at Bergmann & Moore, a law firm that exclusively represents veterans, said in an email this week that the lawsuit is "absolutely vital" for veterans.

"We all agree that no veteran should have to jump through hoops or wait years for the healthcare and disability benefits earned while defending our Constitution," he wrote.

Sullivan, who helped initiate the suit, said it could be several months before the Supreme Court decides whether to hear the case. 

Meantime, Sullivan praised his former organization VCS, VUFT, the law firm of Morrison / Foerster and the non-profit Disability Rights Advocates for working tirelessly on this case over the past five years on behalf of America's veterans.
  
Circuit Judge Mary Schroeder, the sole dissenter in the appeals court decision to dismiss the lawsuit, wrote that the dismissal "leaves millions of veterans without any available redress for claims..."

Which begs the question: How could ten other judges not see that? And why were the merits of the lawsuit recognized the first time around 2 to 1 only to lose with a larger panel? 

I'm no conspiracy theorist, but this one doesn't pass the smell test.

No one can predict how the Supreme Court will rule even if it does choose to hear the case, but veterans advocates are hoping the majority of the nine justices on our highest court heed Schroeder's words.

Friday, September 14, 2012

KEEP KILLING THE BAD GUYS, KEEP TALKING TO THE GOOD GUYS

I'm not a bleeding-heart liberal. I certainly recognize that the violent anti-American protests this week throughout the Middle East and beyond in response to a stupid video denigrating the Muslim religion are a real threat to the United States and need to be taken very seriously.

But what we don't need right now are more politically motivated charges against President Barack Obama for being soft on our enemies.


Gov. Mitt Romney, who's trailing in the latest polls, including a new Fox News poll, clearly sees this latest undeniably frightening uprising as an opportunity to reinvigorate the charge that Obama has failed on foreign policy.

Romney this week accused Obama of being more sympathetic with Muslim protesters than with the American diplomats they attacked in Egypt and Libya. Romney reportedly said Obama was “disgraceful” in that he “apologized for American values.”


Well, the so-called “apology” to which Romney refers, which was issued by the American Embassy in Cairo on Tuesday before the violence began, wasn't actually an apology at all. It was a call for cooler heads, an attempt to quell the angry mob before they attacked. 


Even Fox News' Bill O'Reilly, no fan of Obama, said it was the right thing for the embassy to do. "I'm not sure the governor is correct on that," O'Reilly said on The O'Reilly Factor this week. "The embassy was trying to head off the violence" with their statement.

Longtime John McCain adviser Mark Salter, also no fan of Obama, told RealClearPolitics that there is "nothing wrong in principle with making clear to people, who have yet to embrace the categorical right to free speech, that Americans and their government deplore the deplorable, that we reject vile attacks on Muslims as vigorously as we reject vile anti-Semitic attacks. To do so does not constitute sympathy for the people besieging our embassy, as Gov. Romney alleged. Nor is at an apology for America, as some Obama critics have claimed. It's an expression of our decency."

But in politics, truth is rarer than fiction. The notions that Obama keeps apologizing for America and that he has not been a strong president on matters of national security have enjoyed a long shelf life - but they're not true.

Whatever you think of Obama, the truth is he has been far more of a hawk than most expected. But while George W. Bush got us into an unnecessary and costly war in Iraq, Obama has focused on our real enemy: fundamentalist Muslim terrorist leaders. More of them have been killed on Obama's watch than in the eight years Bush resided in the White House. 

On Wednesday, Obama said of the embassy killings, “No acts of terror will ever shake the resolve of this great nation... Make no mistake. Justice will be done.” 


I tend to believe him, based on what he's done the past four years.

Hell, he even ordered that Predator drones be sent into Yemen to take out an American citizen and former San Diegan (Anwar al-Awlaki), who'd become arguably the world's most influential Jihadist.

Even the ACLU and Ron Paul condemned Obama's decision to kill al-Awlaki - so he must be doing something right! Obama said at the time that the strike against al-Awlaki was "further proof that Al Qaeda and its affiliates will find no safe haven anywhere in the world."

Blake Hounshell, managing editor of the nonpartisan Foreign Policy magazine, told the Los Angeles Times that it “smacked of desperation” for Romney to try to use the embassy’s note as an example of the Obama Administration's weakness abroad. 


Hounshell said that "anyone who knows how diplomacy works knows that Barack Obama is not editing statements by junior foreign service officers in Cairo. And, even if the language was imperfect, it was not an apology. But the narrative for Republicans for a long time has been that Obama apologizes for America and that Democrats are unpatriotic.”

Given the fact that these protests have spread throughout the Muslim world, this has indeed become a dangerous situation for Americans. But what would Romney do? Would he declare war against and send Marines and soldiers to all of these countries?  

Romney's hawk talk and Obama bashing won't make the situation any better. And it could make it worse. 

Some are comparing this situation to the 1979 American hostage crisis in Iran in which Republican candidate Ronald Reagan was sharply critical of President Jimmy Carter, whose attempt to free the hostages failed. But it's not a good analogy. Obama's efforts to kill al-Awlaki, bin Laden, and many other fundamentalist Muslim leaders have succeeded.


It comes down to this: Do you want to throw gasoline on the fire right now and stoke a possible full-fledged worldwide war between Christians and Muslims? Or do you want America to continue strategically killing the bad guys but also continue recognizing and reaching out to moderate Muslims? 


And yes, moderate, peace-loving Muslims do exist. After the violent attack in Libya, pro-American protesters took to the streets of Tripoli to offer condolences for the death of U.S. Ambassador Chris Stevens. The peaceful protestors in Libya, a nation that is nearly 100 percent Muslim, carried signs that read, "This is not how we thank who helped us when we needed help the most." 

That presumably refers to Libyan dictator Muammar Gaddafi, who was also killed under Obama's watch.

So, the choice we have in November in terms of foreign policy in times of crisis seems very clear:


We can either cut off all diplomatic efforts, rattle our sabers, condemn all Muslims as terrorists and move closer toward World War III, or we can continue to eliminate the Muslim terrorists efficiently but also keep an open dialogue with moderate Muslims like the ones who took to the streets of Tripoli.

I don't care if you're a Republican, a Democrat, a Libertarian, an Independent, or a member of the Silly Party
no thinking person should have a difficult time deciding between those two options.

Thursday, September 13, 2012

GROUNDBREAKING LYMPHOMA SYMPOSIUM SATURDAY - SEE AND HEAR IT ALL ONLINE

If you or someone you care about has follicular non-Hodgkin's lymphoma, the most common of all non-Hodgkin's lymphomas, you won't want to miss a groundbreaking symposium taking place this Saturday in Chicago. 

The Chicago Blood Cancer Foundation, Rush University Cancer Center, Hope for Lymphoma, ten top lymphoma physicians, and several leading patient advocates will come together this weekend to present “Follicular Lymphoma – On the Road to Cure.” 


And you don't have to visit the Windy City to be a part of it. The entire event will be streamed live on the Internet for patients around the world - and you can check it out on your mobile devices. For information and registration, just visit www.road2cure.com


If you can't join them in person, just send an email to info@chicagobloodcancer.org and provide your full name, city, telephone number, and email address. They will provide you with access to presentation materials and you can listen, watch, and participate.


Organizers are expecting 10,000 people, or more, to screen it live.


As a 16-year survivor of follicular non-Hodgkin's lymphoma, I can tell you that there has never been a symposium quite like this one.


It won't just be offering up random doctors talking about the basics. 

At this dynamic event, some of the world's leading experts on the disease will be sharing the very latest "inside info" about how this type of cancer can actually be managed, what they're really seeing and thinking about the latest treatments, what the clinical trials are telling us, and where to go from here.


The event is co-sponsored by Teva, makers of a very effective lymphoma drug called TREANDA (Bendamustine). TREANDA, which is indicated for the treatment of patients with indolent B-cell NHL that has progressed during or within six months of treatment with Rituxan or a Rituxan-containing regimen, is showing very positive results and is less toxic than some of the other treatments in its class.


Teva's support of this symposium is a positive indication that this company really wants to reach out to and be part of the nationwide lymphoma community. 

The symposium will address everything from the latest info on Rituxan to lymphoma vaccines to radio-immunotherapy to clinical trials of a whole new generation of treatments. 

The symposium's coordinator is a very good friend and trusted lymphoma patient advocate Liz Hart McMillan. 

Speakers will include another dear friend and fellow NHL survivor Betsy de Parry, an author and very passionate patient advocate, and my close friends Scott Seaman and Charlene McMann, co-founders of the Chicago Blood Cancer Foundation.

Here's the entire program schedule:

Welcoming remarks
By Howard Kaufman, MD, Director of Rush University Cancer Center and Scott Seaman, Esq, and Charlene McMann, Co-Founders, Chicago Blood Cancer Foundation

9:15 am

Introductory remarks by symposium chair, Stephanie A. Gregory, MD, FACP, The Elodia Kehm Chair of Hematology, Rush University Medical Center and Rush University Cancer Center

9:25–9:50 am

Follicular Lymphoma Basics; Advances in First Line Treatment and Management of Asymptomatic and/or Low Tumor Presentation Burden Disease. Brad S. Kahl, MD, Director of Lymphoma Service and Clinical Research Director for Hematologic Malignancies for the University of Wisconsin Paul P. Carbone Comprehensive Cancer Center.

10:00–10:30 am

Management of Symptomatic, High Tumor Burden or Bulky Disease; and What to do if Chemo isn't Working (So That's What Presentation Refractory Means). Mathias J. Rummel, MD, PhD, Head of the Department of Hematology at the Clinic for Hematology and Medical Oncology at the Justus-Liebig University-Hospital, Gießen, Germany and founder of STiL (The German Study Group for Indolent Lymphomas)

10:40–11:00 am

Coffee Break

11:00–11:30 am

Is Watch & Wait Out of Date? What Early Treatments Should be Considered? Is Rituximab Maintenance for Everyone? A lively look at Panel Discussion emerging paradigms and new approaches to treating Follicular Lymphoma. Rush expert Parmeswaran Venugopal, MD, Samuel G. Taylor III, MD, Professor of Oncology; Associate Director, Division of Hematology-Oncology-Cell Therapy; Director, Section of Hematology at Rush University Medical Center, joins guest faculty, Dr. Brad S. Kahl, Principle Investigator on the RESORT Trial, Dr. Mathias J Rummel (bendamustine) and Dr. Stephen J. Schuster, Director, Lymphoma Program; Director, Lymphoma Translational Research, Abramson Cancer Center, the Perelman Center for Advanced Medicine, The University of Pennsylvania Health System

11:30–12:00 pm

Latest Options for Relapse. Christopher R. Flowers, MD, MS, Director Lymphoma Program at Emory University's Winship Cancer Institute; Presentation Associate Professor, Bone Marrow and Stem Cell Transplantation at Emory University School of Medicine; Medical Director, Oncology Data Center, Center for Comprehensive Informatics, Emory University

12:10–12:40 pm

Progress in Stem Cell Transplants: Curative for Some Patients, Now How Might We Cure More? Christopher R. Flowers, MD, MS, along with Rush experts Panel Discussion and researchers, Henry Fung, MD, FRCPE, Coleman Foundation Professor of Blood and Marrow Transplantation, Director, Bone Marrow Transplantation and Cell Therapy and Sunita Nathan, MD, Assistant Professor of Medicine, Section of Bone Marrow Transplant and Cell Therapy, Rush University Medical Center, in an exploration of who benefits most from transplant and the many advances in autologous (patient's own cells) and allogeneic (donor cells) transplantation today.

12:40–1:30 pm

The Winding Road: Our Journeys to Long Term Survival. Lunch while listening to 10-year refractory follicular lymphoma survivor Betsy de Parry, author, journalist, television host and cancer advocate, share practical tips and tales of optimizing survival.

1:30–2:00 pm

How Close Are We To Cure? The Most Exciting Novel and Emerging Treatments in the Pipeline. Dr. Stephen J. Schuster, Director, Lymphoma Program; Presentation Director, Lymphoma Translational Research, Abramson Cancer Center, the Perelman Center for Advanced Medicine, The University of Pennsylvania Health System

2:15–2:45 pm

The Road Ahead: Managing Follicular Lymphoma For Long Term, Optimum Survivorship. Guest faculty and Rush faculty, key opinion leaders in the lymphoma world, share their best thoughts on where we are headed and what survivors can do to help improve outcome and go the distance. Joining our panel of experts is Janine E. Gauthier, PhD, Director Clinical Services, Cancer Integrative Medicine Program; and Director of Psychosocial Services, Rush University Medical Center.

This panel will touch on such topics as:


* the importance of obtaining a second opinion from a lymphoma expert

* the role of complementary and integrative medicine
* can stress make my cancer come back?
* what is Myelodysplastic Syndrome; how is it treated; how to help avoid it
* what is transformation and do we know enough to reduce its risks?
* is a clinical trial right for you; evaluating them with your oncologist.

ANOTHER WACO TRAGEDY UNFOLDING: THIS ONE INVOLVES MISTREATMENT OF VETERANS

There's another tragic controversy unfolding in Waco, Texas involving the federal government - but it has nothing to do with any religious cult. This one's arguably much worse, because it concerns the unthinkably shoddy treatment of our wounded warriors by the Department of Veterans Affairs (VA).

With the help of some conscientious veterans, investigative journalists at the Austin American-Statesman discovered preposterously long benefits claim delays and rampant errors at VA's Veterans Benefits Administration (VBA) disability claims processing office in Waco.

Veterans living in and around Waco, a city of about 125,000 located along the Brazos River halfway between Dallas and Austin, are reportedly waiting 13 months for VBA to make a decision on their benefits. 

Sadly,
while they wait, and wait, to get the help they've earned, many veterans get increasingly frustrated because they can't pay their bills, support their families or get the care they desperately need. When this happens, depression and even thoughts of suicide sometimes creep in as veterans begin to feel abandoned by the nation they honorably served. 

The Waco regional office is dead last in the nation, averaging a reported 400 days to process a claim. It's hard to imagine that in this great nation we are leaving our service men and women hanging out to dry like this.

The story, which was picked up by Stars & Stripes and Associated Press, evidently got the attention of Congress, which has scheduled a hearing for Sept. 21 titled "Breaking Through the Backlog: Evaluating the Efforts of the New State Strike Force Team."

The hearing will focus on these long waits and errors by VA in Waco, Houston and other cities in Texas, where the situation has gotten so bad that Gov. Rick Perry last month reportedly declared an emergency.

Paul Sullivan, former project manager at VA and now director of veterans outreach for the Maryland-based law firm Bergmann & Moore, which concentrates only on VA disability benefits law, testified before Congress about the claims backlog earlier this year.

He recently told the American-Statesman that VBA "has made similar promises for decades and failed to deliver. What’s different this time is enormous public attention, Congressional interest and the magnitude of the crisis.”


A statement released by Bergmann & Moore this week declared that VBA should "quickly implement quality training and streamlined regulations in order to reduce the number of VBA mistakes. VBA’s promised training and a new computer system have yet to fully materialize."

Bergmann & Moore's blogs have been all over the issue of VBA’s entrenched problems: 


*On July 20, the law firm reported how VBA’s Waco and Houston offices are grinding to a halt.

* On July 5, the firm described a contentious Congressional hearing on VBA’s claim crisis. 


* And back on June 12, the firm blogged about VBA’s failures in my home state of California, where VBA’s claim processing error rate reached 60 percent in Los Angeles.

The upcoming hearing on the Waco debacle 
should be covered live via the internet at the House Veterans’ Affairs Committee web site.

Of course, while Waco's VA is the worst offender, this is a national crisis. As of this past week, nearly 900,000 cases are pending, with 66 percent of those going unaddressed for more than four months. 


Another 255,000 claims currently await appeal, according to Bergmann & Moore.

“With more than 1.1 million veterans claims buried in VA bureaucracy,” Sullivan recently said, “the problem only gets worse.”


Stay tuned. I will stay on top of this story.




Wednesday, September 12, 2012

FRIENDLY MEMO TO HUFFINGTON POST: LYMPHOMA IS MORE COMMON THAN YOU THINK

I read The Huffington Post. I really like The Huffington Post. And considering how much content the popular news site posts every day, the stories are usually accurate.

But their editors published a factually challenged and in my opinion somewhat misleading piece today on famous people who've been diagnosed with lymphoma.

The article, which has no byline, leads off by mentioning that Arlen Specter, the former U.S. Senator who I've had the pleasure of interviewing several times over the years, has been diagnosed with non-Hodgkin's lymphoma, which makes this his third battle with cancer (he's already beaten Hodgkin's lymphoma twice).


But the story says Specter is 72 years old. Uh, no, he isn't. Actually, Specter is 82; he was born February 12, 1930.
 

Beneath the piece there is a short slide show that includes "Famous Faces Touched by Lymphoma" (either Hodgkin's or non-Hodgkin's). The list includes just seven celebs: Dexter star Michael C. Hall, Ramones lead vocalist Joey Ramone, Survivor winner Ethan Zohn, Spartacus: Blood And Sand actor Andy Whitfield, actor Mr. T, Microsoft co-founder and philanthropist Paul Allen, and Rep. Dave Camp (R-Mich).

There's certainly nothing wrong with listing famous people who have battled lymphoma. I include several in my book Hope Begins in the Dark.


But is this list of "famous faces" really the best that Huffington Post editors could come up with? They've left out so many famous people who've suffered from the disease. And by those omissions, I would argue, they've squandered an opportunity to show their many readers just how common lymphoma is.

Among those left off Huffington Post's list of famous people who've had either Hodgkin's or non-Hodgkin's lymphoma are the following:

Former First Lady Jackie Kennedy Onassis, New York Yankee great Roger Maris, Boston Red Sox CEO Larry Lucchino, country western icon Gene Autry, comic actor and filmmaker Gene Wilder, Nobel Prize-winning author Gabriel Garcia Marquez, Rowan and Martin's Laugh-In star Arte Johnson, Rowan and Martin's Laugh-In co-host Dan Rowan, Black Sabbath rock guitarist Tony Iommi, former Buffalo Bills quarterback Joe Ferguson, and Chicago blues legend Junior Wells.


Wait, there are more, including actor and former Senator Fred Thompson, King Hussein of Jordan, actor and former Mr. Universe Steve Reeves, Pulitzer Prize-winning Shoe cartoonist Jeff MacNelly, civil rights activist and comedian Dick Gregory, baseball slugger Andres Galarraga, NFL Pro Bowl linebacker Mark Fields, WNBA rising star Jessica Breland, former presidential candidate Paul Tsongas, PGA golf champion Paul Azinger, former CIA director William Casey, and flying legend Charles Lindbergh.

Now are you getting an idea of just how incomplete their list is? If Huffington Post editors had included even a few more of these famous names, I think it would have made for a better story.

Lymphoma is the seventh most common cancer in the United States, which I did not know when I was diagnosed. I suspect many Americans still don't know this. 


Articles like the one in Huffington Post today, while certainly well meaning, don't fully illustrate how devastating, and devastatingly common, this disease really is.

Tuesday, September 11, 2012

GOOD NEWS FOR LYMPHOMA PATIENTS IN EUROPE... AND THE U.S.?

There's some good news for lymphoma patients in Europe - and, potentially, the United States. 

Cell Therapeutics (CTI), the Seattle-based pharmaceutical company, today announced the commercial launch of its aggressive non-Hodgkin's lymphoma drug, Pixuvri, in Europe. 

Pixuvri was granted conditional marketing authorization by the European Commission in May 2012 and is the first drug licensed in Europe to treat adult patients with multiply relapsed or refractory aggressive B-cell non-Hodgkin's lymphoma.

According to the European Cancer Observatory, Cancer Fact Sheets, there are approximately 37,000 new cases of aggressive B-cell NHL in Europe every year.

For American lymphoma patients, there is a Pixuvri clinical trial currently open for third-, fourth- and fifth-line patients with diffuse large B-cell lymphoma (DLBCL) who’ve relapsed after therapy with CHOP-R (chemotherapy and Rituxan) or an equivalent regimen and are ineligible for stem cell transplant.

You can learn more about that trial at this link.
 

Patients with late-stage aggressive NHL who are not eligible for or who've not responded to second-line therapy have very limited treatment options, with average survival of less than a year, according to Dr. Ruth Pettengell, Consultant Hemato-Oncologist at St George's Hospital, London and principal investigator of the Phase III EXTEND study. 

In a statement released today, Pettengell said, "The evidence for Pixuvri demonstrates improved efficacy over current treatment options, but without the cardiotoxicity of anthracyclines. By addressing this unmet need, Pixuvri is an important new treatment option for physicians treating this group of patients."

According to a May 30th piece in the Lancet, one of the world's leading general medical journal and specialty journals in oncology, neurology and infectious diseases, in the Pixuvri EXTEND study, when compared with other active single-agent  treatments, more patients on Pixuvri achieved a complete response or unconfirmed complete response, and also survived longer before their disease progressed.


Prior to the approval of Pixuvri there was no standard of care for treating patients who failed front-line and second-line therapy for aggressive B-cell NHL. The EXTEND trial is the only randomized controlled clinical study in this patient population.

"We are pleased to be able to offer the first meaningful treatment option for physicians treating those patients with multiply relapsed and refractory aggressive NHL," James A. Bianco, M.D., President and CEO of CTI, said today in a statement. "CTI looks forward to making this innovative product available to healthcare providers across the European Union."


Could the United States soon follow? We'll be watching this closely.









Monday, September 10, 2012

IS THERE ANY OBJECTIVE JOURNALISM ANYMORE?

Several years ago I wrote a story about my two best friends - one a Christian conservative Republican ex-Marine, the other an agnostic liberal Democrat college professor. In the piece I described how much I admired both of them but always seemed to find myself in the middle. 

Well, they're still my best friends... and I'm still in the middle. My liberal friend still thinks I'm too conservative, and my conservative friend still thinks I'm too liberal. 

I've always been a moderate. Don't misunderstand, I have plenty of passion and opinions, but I try to see an issue from all sides and make an effort to find common ground whenever possible. 

Not only in my journalism, but in my life.

I guess I got this in part from my parents, who generally didn't judge people based on their politics. But I was forced to really put this principle to the test when the coach of my debate team in college made us take the opposite position of what she knew we believed. 

It opened my eyes, and my heart. It made me a bit less strident and gave me a better understanding of people whose views were different than mine. It made me try even harder to understand and appreciate why folks sometimes believe the things they believe.  

I think this is an essential quality not only of a good person, but a good journalist. Sadly, this philosophy seems to be falling out of favor in the media these days. Soon, to find a reporter without an obvious political bias you'll have to visit Jurassic Park, because objective journalists are going the way of the dinosaur.

We're living in an increasingly polarized time, and this is reflected dramatically in what we read and hear in the news. It seems almost everyone in the press now identifies with either one side of the aisle or the other. There's not a whole lot of agenda-free reporting in 2012.

Even in alleged hard news print reports you can often identify the slant of a reporter (or the company for which he or she writes) within the first few sentences. As far as broadcast journalism goes, we've got MSNBC on the left and Fox News on the right, and never the twain shall meet.

I'm doing what I can to hold on to the most fundamental tenet of journalism, which is that the only bias you should have when covering a story is the truth. If you can't be entirely objective, at least be fair.

I recently wrote a story story for Newsweek/The Daily Beast in which I interviewed several veterans advocates who expressed concern over how veterans would be treated under a Mitt Romney presidency.

A month later, I wrote a piece for Newsmax in which I interviewed veterans advocates who were very concerned about how President Obama has handled Gulf War veterans.

Of course, most Romney supporters probably dismissed my Daily Beast story as biased, and most Obama supporters probably dismissed my Newsmax story as biased. The American people by and large evidently only want to read or watch reports that reaffirm their already entrenched political beliefs. 

Is there still a hunger for bias-free reporting? Is there still a desire among news consumers to be challenged or to learn something that might not correspond with what you already think is the truth? You tell me. 


While objectivity may be out of fashion, I'm still a believer. When I write an opinion piece, that's one thing, but when I write a news story of news feature, I will always try to present all sides of an issue.

There's nothing self righteous about this, folks. It's just journalism as it was meant to be. Do you agree?

This sums it up well. It's from the Pew Research Center's Project for Excellence in Journalism:

JOURNALISM'S FIRST OBLIGATION IS THE TRUTH  

Democracy depends on citizens having reliable, accurate facts put in a meaningful context. Journalism does not pursue truth in an absolute or philosophical sense, but it can--and must--pursue it in a practical sense. This "journalistic truth" is a process that begins with the professional discipline of assembling and verifying facts. Then journalists try to convey a fair and reliable account of their meaning, valid for now, subject to further investigation. 

Journalists should be as transparent as possible about sources and methods so audiences can make their own assessment of the information. Even in a world of expanding voices, accuracy is the foundation upon which everything else is built--context, interpretation, comment, criticism, analysis and debate. 

The truth, over time, emerges from this forum. As citizens encounter an ever greater flow of data, they have more need--not less--for identifiable sources dedicated to verifying that information and putting it in context.