Tuesday, February 17, 2015

Educational Project Will Assist Lymphoma Patients in China

Kai-Fu Lee, Google China's founder, still battling lymphoma cancer
In the fall of 2013, Kai-Fu Lee, the Chinese venture capitalist and entrepreneur known for his role as founding president of Google China and his work with Microsoft and Apple, announced that he had lymphoma. The shock of hearing this news among the 50 million-plus people who read his popular blog powerfully demonstrated that information about this common and often treatable cancer globally is still scarce.

In China, a country with 1.4 billion people, the incidence of lymphoma is increasing by more than six percent each year, according to Dr. Zhu Jun, director of the Beijing Cancer Hospital's lymphoma department. But that is not widely known. Jun told the South China Morning Post that knowledge of the disease even among doctors in China is sketchy, but increasing.

A recent epidemiology survey concluded that lymphoma (Hodgkin's and non-Hodgkin's) is now the ninth most common cancer among Chinese males on the mainland. That's still not quite as high, percentage-wise, as the United States, where lymphoma is the seventh most common cancer in males and females. But it is on the rise, and that's cause for concern.

Researchers are seeing an especially significant increase in the disease among China's young people in urban areas such as Beijing. Lymphoma experts in China attribute that largely to environmental pollution. As I reported for Newsweek, China's air remains polluted, but of course the air in many parts of the world is polluted. 

The good news is that not only is Kai-Fu Lee now in remission, but China is embracing solar power and other clean energies. And, China is also stepping up its efforts to educate its citizens about lymphoma. A clinical diagnosis and treatment guideline was issued jointly a few years ago by the Chinese Society of Hematology under the Chinese Medical Association and the Chinese Anti-Cancer Association

But it appears that a lot of China's residents to this point still don't have a good understanding of just what lymphoma is -- despite all the groundbreaking research we are seeing in blood cancers in China. 

To be honest, I didn't know much about lymphoma, either, until I was diagnosed with it in late 1996. My original oncologist told me I had stage IV follicular low-grade non-Hodgkin's lymphoma and that I'd be very luck to live three years. 

But 18 and 1/2 years later, I'm happily still here. And the most meaningful goal in my life right now is to help others win this fight, too, whether they're in San Diego or Shenzhen. 

I'm about to embark on a historic educational project to increase awareness of lymphoma in China. It is the fulfillment of a dream I have had for years to bring my patient advocacy to my friends and colleagues in China.

We are simply reaching out to lymphoma cancer patients in China and their loved ones in a gesture of friendship and giving them some information and inspiration. 

I do not want to tell them what to do. I just want to help them as best I can with the psychological-social aspects of being diagnosed, give them some information about the disease, and show them that lymphoma really is treatable and beatable by sharing with them the very latest news regarding new treatments and clinical trials. 

I've had a lifelong deep affection and respect for China's people and culture, and have visited there and love China's people. I covered the Beijing Olympics as a journalist, and all I want to do now is reach out and support the Chinese people and bring our two great nations a little closer together.

Hope Begins

My battle with cancer, which has been a roller coaster ride, is chronicled in my book, Hope Begins in the Dark, which I'm proud to say has become embraced globally. It is the best-selling book ever written about lymphoma, I am told. Why? I guess because of my very simple but true message: There is hope! But also because the world isn't as aware of the disease as it should be, and the book is not just about inspiring folks, it is also about informing them in a respectful way.

The book profiles 40 lymphoma survivors, including such famous folks as Microsoft co-founder Paul Allen and Chicago Cubs All-Star baseball player Anthony Rizzo. In the book we talk with survivors openly -- no-holds barred --  about what treatments each person chose, how each of us dealt with the psychological impact of being diagnosed with cancer and what it's like to face possible death, how it affected the patient's children and families, and much more.

China's people are just beginning to learn how treatable lymphoma is and just what treatments are available for them or will be soon.

Since my cancer diagnosis and subsequent recurrences, I've committed myself to helping people who don't generally have access to this type of information and yet want to be informed, inspired and reminded that cancer is not a death sentence. And it isn't! Not any more!

There is obviously a hunger in China, and across the world, for information about how to fight cancer. And this project is of course not political in any way. I've established an alliance with many prestigious global pharma and hospital and oncologist partners that will hopefully lead to positive outcomes for people who are suffering and have a deep desire to learn more about their options and about ways of coping when you receive a cancer diagnosis. 

It can be overwhelming, believe me. And scary. But it can also be life-changing. It makes you appreciate the precious gift that is our life. It changes your perspective and makes you appreciate every day we are on this earth.

We will be producing an all-new version of Hope Begins in the Dark that profiles China lymphoma survivors. It will be available for FREE as a hard copy and ebook to China's cancer patients and their families.

Eastern Medicine / Western Medicine

I'm happy to report that there are a bunch of new and less toxic treatments for lymphoma developed by American and European drug companies and biotech firms that did not exist when I was first diagnosed with stage IV non-Hodgkin's lymphoma in 1996. And still others are in late-stage clinical trials.

This includes many new targeted therapies and immunotherapies that harness the body's immune system to fight the cancer. 

China is becoming an increasingly important part of this and has established a number of exciting partnerships with United States drug companies to fight this disease. 

Innovent, for example, one of China's largest biotech companies, recently announced that it has raised the needed capital to continue studying eight antibody products, including one for non-Hodgkin's lymphoma.

Innovent CEO Michael Yu, reportedly the first Chinese national to have invented and developed two biologic drugs, recently told PharmaExec.com that the Chinese regulatory environment has improved greatly. That's good news for cancer patients and research.

Spectrum Pharmaceuticals, about which I have written often in the past, recently announced that it is bringing Zevalin, its very effective radio-immunotherapy treatment for lymphoma, to China in a partnership with Casi Pharmaceuticals, an American company that focuses exclusively on China.

Wait, there's even more. As China Economic Net recently reported, two Chinese scientists, Wang Zhenyi and Chen Zhu, won a top U.S. award recently by the U.S. National Foundation for Cancer Research for creating a remarkable new treatment that combines Traditional Chinese Medicine (TCM) with Western medicine. 

The new therapy increased the five-year survival rate of patients with acute promyelocytic leukemia (APL) from 25 percent to 95 percent. In clinical trials, the Chinese researchers showed that arsenic trioxide, which has been used in TCM regimens for more than 2,000 years, is effective against APL.

The treatment is now a standard for APL treatment around the world, China Economic Net reported, and "has turned one of the most fatal diseases into a highly curable one."

These and other examples show that China is becoming a legitimate player in the treatment of cancer. The country clearly has one foot firmly planted now in the world of modern medicine. But the other foot remains ensconced in its ancient healing traditions. And that's a good thing. 

As I've said many times since I was diagnosed with cancer in late 1996, we can learn a lot from China's ancient healing methods, as well as its modern medical ventures. And China can of course learn much from us.

It's all about cooperation, and friendship. It's all about sharing the best from both worlds, both cultures. And that extends far beyond healthcare. It also includes business, art, music, literature and so much more. 

China or Bust

When my cancer returned for the first time back in 1999, m
uch to the dismay of my former oncologist, who was allegedly renown but frankly clueless, I enrolled in a stage III clinical trial for Bexxar, a radio-immunotherapy drug like Zevalin developed by an American doctor and researcher named Mark Kaminski at the University of Michigan. 

The drug saved my life. Mark is a genius and I owe such a debt of gratitude to him.

But I also embraced "alternative" medicine, including a variety of immune system-boosting supplements and other things that American doctors generally don't endorse. I took something called DCA, which I've written about on this news blog before and which saved the life of my very close friend Tim McGough, who has fought the same type of lymphoma as me and who is profiled in my book. 

I was and remain an avid user of Chinese herbs, too, which have shown to be effective for some patients in boosting immune system activity and fighting lymphoma. 

And then there's acupuncture, which of course is part of the Chinese medical approach that has been around for thousands of years. There is no evidence that acupuncture actually directly kills the tumors, at least not of which I am aware. But 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.

One of my primary life goals now is to embrace the best of both Western and Eastern medicine and share what I learn with as many cancer patients and their families as I can. Because cancer is treatable, and beatable. Like Kai-Fu Lee, and yours truly, you can and will win this fight!

Wednesday, February 4, 2015

EXCLUSIVE: Renee Richards, the Former Tennis Pro Who Changed Genders in 1975, Talks About Life, Tennis and Bruce Jenner

The second of two autobiographies by Dr. Renee Richards
As just about anyone who was alive in the 1970's recalls, Renee Richards' courageous fight for her rights as an athlete and a woman made her instantly famous, admired, and controversial. Richards, the eye surgeon and former professional tennis player, famously changed from a man to a woman in 1975. 

Two years later, after a tough legal battle in the New York Supreme Court, she was allowed to play in the 1977 US Open tennis tournament as a woman. While the court decision generated bold headlines and was groundbreaking for transsexuals, and professional sports, clearly this country still has a ways to go in terms of tolerance and understanding for those who seek to change genders. 

Case in point: all the careless whispers and bad journalism this week surrounding Richards' alleged advisory role with Bruce Jenner, the former Olympic Decathlon champion who is now also apparently pursuing a new life as a woman.

Star magazine and others reported this week that Richards is Jenner's current sex-change adviser and longtime friend. Citing an unnamed source, the tabloid said Richards, who's now 80 but still healthy and sharp, told Jenner, who’s best known to millennials as the reality TV star and patriarch of the Kardashian family, that a sex change is "a serious, life-altering procedure and it not something to do unless you absolutely have no other choice." 

Renee Richards meeting the press
Star also reported that Richards, who was born Richard Raskind, told Jenner that he should "consider antidepressants first, because life could become an irreversible train wreck if you're not completely certain about having the surgery."

The story of Richards' so-called role in Jenner's life has gone viral. It's all over Facebook and Twitter. But there's just one problem: not a word of it is true. 

"Rumors that I gave Bruce Jenner some advice is like Mark Twain's comment, 'Rumors of my death have been greatly exaggerated'," Richards told me today in her typically dry-witted fashion. When we chatted via email, she hadn't spoken to any other reporters.

"I have heard the rumors too that I have 'advised' Bruce Jenner," she said. "But I can tell you now, and which you can publish if you like, I have spoken not one word to Bruce Jenner since one evening in 1981 when I was introduced to him at a Women's Sports Foundation Dinner in New York City."

Richards said several sports figures of that era were present at the dinner, including Martina Navratilova (who Richards once coached), Billie Jean King, Mary Carillo, and Robin Roberts. "I only know of Jenner's present path from the newspapers, same as you I guess," Richards said.

Renee Richards the Person

I've interviewed Richards before, for ESPN.com and other publications, and I've always found her to be refreshingly honest and without pretense. I admire her kindness, strength, outspokenness and sense of humor. And yes, she's got guts. Her path has not been an easy one. But she seems very happy now, at peace.

The author of two autobiographies and a new book, Spy Night and Other Memories: A Collection of Stories from Dick and Renee, which is a compelling collection of stories from her life, including her younger years when she was a man, Richards shared some insight with me today into how much things have changed since her highly publicized sex change and legal efforts to play on the women's tennis tour 40 years ago -- and how some things remain the same.

"As I think about all this, it would seem to me presumptuous if I were to advise anyone today on the subject of sex change, or 'transition' - a new word not in existence in my day," Richards said. "I am expert in tennis and ophthalmology, reasonably knowledgeable in golf, and hardly a personal life advisor. Besides, what I went through occurred in the 1970s. Much has happened in the field of gender identity since - from the medical, societal, legal and psychiatric standpoint. When I became a woman I did what was the usual at the time: informed a few friends and family members, changed my name, moved 3,000 miles away, and started a new life."

Richards, who to this day is the most famous transgender athlete in the world and the one who took so much abuse for just being who she was, said that in those days people who did not want their personal choices revealed did what they called "woodworking." It simply means merging into the woodwork. They disappeared. But her efforts to stay out of the limelight didn't last long.

"I was 'uncovered' a year after my move because I played in that infamous amateur women's tournament at La Jolla [San Diego] and when I won it the world found out who I had been," Richards said. "Being 'private' was no longer ever possible for me again."

Richards said she "pleaded" with reporter Dick Carlson, who is Fox News commentator Tucker Carlson's father, not to expose her on national television when he called her office in Orange, California to say he was going to reveal her past.

"I said, 'You cant do this. I am a private person'," Richards recalled. "His reply? 'Dr. Richards, you were a private person until you won that tournament yesterday.' And that is the way it was. It would seem that Bruce Jenner would find it impossible to to keep even a shred of privacy about his life in this era of media exposure."

Richards said that being many years removed from being Olympic Decathlon champion does not diminish Jenner's accomplishment and celebration: "And with rumors about his personal life quest running rampant, he has little choice but to live with its public disclosure. It is a difficult journey. I admire him and wish him the best."

Out of the Limelight

Richards, who played professional women’s tennis from 1977 to 1981 and was ranked as high as 20th overall, has led a life largely out of the limelight since she retired from women’s tennis. She said that while society has made great strides since she came out, making the transition from one gender to another is “still a big problem, it can still cause families grief, it’s not a simple condition to have, you have to live with it.”

At times, Richards has been criticized by some transgender activists for walking away from her alleged responsibility to speak out for the rights of transgender people. But Richards doesn’t see it that way.

“I was an unwitting role model, an unwitting pioneer,” she said. “I didn’t do it for doing good, I did it for selfish reasons. I did it because it was my right to do it. The fact that it helped other people was secondary. The primary impetus to do it was that I thought I was entitled. But if it’s helped others, that’s wonderful.”

When her story first broke, Richards was called ungodly and immoral, among other things. “My reaction of course was, ‘Who are you to tell me these things? You don’t know me, you don’t know what’s in my mind?'" she said. “My hope is for all trans people to live a normal life. For some it’s very hard, for others it’s a picnic. But I can’t complain, I’ve had a wonderful life, as a man, woman, doctor, athlete, parent. I’ve had a wonderful life."