CancerConnect Blog

jrenoJamie Reno, an award-winning correspondent for Newsweek for 20 years, the author of several popular books on cancer survival and a passionate advocate for cancer patients discusses key topics of interest to cancer patients and their families. Jamie is a 17-year, three-time survivor of stage IV non-Hodgkin's lymphoma has also written for The Daily Beast, New York Times, Los Angeles Times, Sports Illustrated, Rolling Stone, People, ESPN, & MSNBC.

January 22nd, 2014 · 4 Comments

Know The Early Warning Signs of Cancer

By charles

Q I hear a lot about common symptoms—breast lumps, unusual bleeding, changes in a skin mole—that might lead to a cancer diagnosis, but I’ve also heard that I should really be aware of earlier, less obvious changes in my body that could lead to an earlier diagnosis. Can you tell me what some of these more subtle clues might be?

A Unfortunately, by the time some of the most common symptoms like those you mentioned are noticed, cancer is often in its later, more difficult-to-treat stage. The more subtle signs are frequently the earliest clues of cancer. Unfortunately, they’re easily missed or even ignored—usually because they’re vague and may mimic other far-less-serious problems. But by paying close attention to them, you can discover the cancer when it’s most treatable, thus saving precious time and, most importantly, your life. Here are seven early and all-too-often overlooked signs of cancer that you shouldn’t ignore in yourself and your loved ones.

Abdominal Bloating

Having a bloated or distended abdomen can be an early—and sometimes the only—warning sign of ovarian cancer. One of the deadliest cancers in women, ovarian cancer kills nearly 15,000 women per year in the United States. About 80 percent of ovarian cancers have spread (metastasized) before they’re diagnosed, but, like many cancers, prognosis is good if detected and treated early.

Persistent abdominal bloating—that’s bloating lasting for more than two weeks or so—must be taken seriously. Some other early warning signs of ovarian cancer are difficulty eating or feeling full quickly or having a frequent or urgent need to urinate (see Frequent Urination below).

Abdominal bloating can also signal other cancers, such as colorectal cancer, one of the most common cancers in the United States, striking more than 150,000 and killing more than 50,000 every year. Other subtle warning signs of colorectal cancer include a change in bowel habits (such as diarrhea, constipation, or narrowing of the stool) lasting for more than a few days or a feeling that you need to have a bowel movement but the urge isn’t relieved when you do.

Frequently Feeling Full

As mentioned above, often feeling full, even after eating a small meal, can be a sign of ovarian cancer, but it can also signal cancer of the pancreas or stomach. About 38,000 people in the United States die from pancreatic cancer every year, making it the fourth-leading cause of cancer death. Other commonly overlooked signs of pancreatic cancer, which affect men and women equally, are loss of appetite and unintentional weight loss (see below), yellowed eyes and/or skin (jaundice), and pale, bulky, greasy, floating stools.

A feeling of fullness in the upper abdomen after a small meal is one of the more common signs of stomach cancer. Unfortunately, even this sign often isn’t noticed until stomach cancer is more advanced. As might be expected, unintentional weight loss is another sign of stomach cancer, which usually affects older adults and men more than women. Once the leading cause of cancer deaths in the United States, it still kills 11,000 people annually. (Lung cancer now heads the list of deadliest cancers in both men and women.)

Frequent Urination

Having to urinate a lot or feeling that you need to go but can’t are both insidious signs of bladder cancer, which strikes more than 67,000 Americans annually. Men are about three times more likely than women to develop it, and older people are more likely to be affected. Reddish yellow or occasionally dark red urine are also possible signs.

And, as mentioned above, needing to urinate frequently or feeling you have to go right away can also be subtle signs of ovarian cancer. Like many other nonspecific signs of cancer, urinary problems can also signal conditions other than cancer, especially urinary tract infections or prostate enlargement in men.

Breast Swelling or Other Changes

Finding a lump in her breast can make any woman’s heart sink. Although a lump is the most common sign of breast cancer, there are other, more subtle signs to look out for. Swelling of the whole breast or part of it, especially if there is skin redness or discoloration, can signal a rare, highly aggressive, and deadly form of cancer called inflammatory breast cancer (IBC). Skin irritation, dimpling, itching, or scaliness; thickening of the nipple or breast skin; and nipple discharge other than milk can be other warning signs of IBC and different types of breast cancer, as well.

And it’s not just women who should look for these signs. About 2,000 men in the United States were diagnosed with breast cancer last year, and about 450 died from it. Men who have been exposed to chest radiation should be particularly vigilant. The good news is that whether you’re a man or a woman, when breast cancer is found early, it is highly treatable.

Unintended Weight Loss

Most of us seem to be forever trying to shed a few pounds. But if you’re losing weight when you’re not trying to, this can be a telltale sign of cancer. Indeed, according to the American Cancer Society, losing more than 10 pounds unintentionally is the first sign of many cancers. Unexplained weight loss is particularly common in cancer of the stomach, pancreas, lung, and occasionally kidney. As might be expected, loss of appetite is also common—although some patients lose weight despite having a good appetite and eating normally. Some also report nausea, vomiting, and fatigue.

Hoarseness

Hoarseness is easily chalked up to a cold or an allergy or even to simple voice strain, but persistent hoarseness should be heeded. People who suffer from gastrointestinal reflux disease often complain of a hoarse voice, which is caused when stomach acids push up into the esophagus. As one might suspect, however, chronic hoarseness is common among smokers and can be a sign of throat or lung cancer. A hoarse voice can also signal esophageal, stomach, or thyroid cancer.

Striped Nail

A dark band running down a fingernail or toenail—particularly the thumb or big toe—may not seem like much to worry about, but this often-ignored symptom may signal one of the most deadly types of skin cancer: melanoma. Unfortunately, melanoma is on the rise, especially in young people. More than 56,000 people in the United States will be diagnosed with this highly aggressive form of skin cancer this year, and more than 8,000 will die from it. Often written off as a bruise, these dark-streak melanomas are responsible for more than one-third of melanomas in people of color.

Take Note of All Your Body Signs

Many of the signs discussed here, as well as myriad others, can point to less serious medical problems than cancer, but the only way to know for sure is to discuss them with your doctor. More than likely, an occasional, short-lived bout of belly bloating, hoarseness, or frequent visits to the bathroom is inconsequential. But if any of these subtle signs lasts more than a couple of weeks, it should be brought to your doctor’s attention. Remember, early detection means quicker treatment and a better outcome. This is particularly true when facing a diagnosis of cancer.

Authors

Joan Liebmann-Smith, PhD, is a medical sociologist and an award-winning medical writer. Her articles have been published in American Health, Ms., Newsweek, Redbook, Self, and Vogue, and she has appeared on numerous television talk shows, including the Oprah Winfrey Show and the Today Show. She has a daughter, Rebecca, and a cat, Fazelnut, and she lives with her husband, Richard—also a writer—in New York City.

Jacqueline Nardi Egan is a medical journalist who specializes in developing and writing educational programs with and for physicians, allied health professionals, patients, and consumers. She is also a former medical editor of Family Health magazine. She has a daughter, Elizabeth, and two dogs, Coco and Abby, and she divides her time between Darien, Connecticut, and Sag Harbor, New York.

Body Signs: From Warning Signs to False Alarms...How to Be Your Own Diagnostic Detective by Joan Liebmann-Smith and Jacqueline Egan (Bantam Dell, 2007; $14) is available at all booksellers. Visit http://www.bodysignsbook.com for more information.

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November 25th, 2013 · 15 Comments

Cancer Patient Nick Auden Dies While Fighting Drug Companies for Treatment

By Jamie Reno

Nick Auden photo

Nick Auden

I just received some heartbreaking news: Nick Auden, the focus of the worldwide Save Locky’s Dad campaign which I wrote about here at CancerConnect last month, has died as a result of stage IV melanoma.

The 41-year-old husband and father of three young children had been bravely campaigning for access to a clinical trial of anti-PD-1, a treatment currently being tested by pharmaceutical companies Merck and Bristol-Myers Squibb (BMS).

Nick's doctors concluded that this treatment was his last and only chance to survive. But Nick could not convince either drug company to give him the drug.

Two weeks ago, as the disease progressed and Nick failed to gain access to the potentially lifesaving drug, he flew to MD Anderson Cancer Center in Houston with his wife Amy for a last-ditch, experimental treatment (TIL Therapy) that they hoped would stave off the cancer’s progress until he got anti-PD-1.

But it was sadly too late. Nick was admitted to intensive care a week ago during the course of the treatment. He was then flown to his Denver home on Tuesday via air ambulance to spend a last, precious few days with his three beloved children, Locky, 7, Hayley, 5, and Evan, 1.

He died on Friday, November 22. The great tragedy, of course, is that this did not have to happen.

Amy told me last night, "We were airlifted back to Denver mid last week. We got home in time so the kids could see him. It is a tragedy and I am barely coming to terms with it. Thank you and CancerConnect for all your wonderful support."

I only wish I could have done more somehow.

More than half a million people worldwide signed the change.org petition pleading with Merck and BMS to give Nick the drug. The campaign attracted support from cancer experts, politicians, the Federal Drug Administration, celebrities and the general public around the world.

It is Amy's fervent hope that Nick’s campaign can make a difference in the future for others in this heartbreaking position. I share that hope. This was, and is, a very important campaign for all cancer patients and their loved ones.

Amy says the law must change to compel drug companies to provide compassionate access to potentially lifesaving medicines in late phase trials.

While the Auden family was not successful in convincing either Merck or BMS to provide anti-PD-1, Amy concludes poignantly, "I sincerely hope that the campaign is a catalyst for much needed change in the attitude of all large pharmaceutical companies with potentially lifesaving drugs."

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November 12th, 2013 · 15 Comments

PTSD Common for Soldiers and Cancer Patients

By Jamie Reno

war is hellMy heroes have always been war veterans. And cancer patients. When you think about it, the two groups have a lot in common.

Recently, I interviewed a Marine combat veteran who'd endured four tours of duty in Afghanistan. This guy had seen one of his best buddies killed in an improvised explosive device (IED) blast.

But when he learned that I’d been through four battles with stage IV non-Hodgkin's lymphoma, he asked me how I made it through.

I just shook my head in amazement and said, “It was absolutely nothing compared to what you must have gone through in combat, seeing your friends die and getting shot at.”

He said in all sincerity that he could easily handle being in a war better than going through cancer treatment.

I told him I never wanted to find out which “fight” is tougher. We shared a laugh. And at that moment I was reminded, again, how much war veterans and cancer patients do indeed share.

I respect and admire every man and woman who puts on a uniform and fights for our country, and every man, woman and child who's been diagnosed with and fights cancer.

We fight very different battles, of course, but cancer and war, which are both fitting metaphors for the other, bring out the best, and worst, in us.

Both are ultimate tests of our strength, courage, and love for life.

Both can be pure hell.

And both can cause deep and lasting psychological trauma.

Last year, I reported for The Daily Beast that about one in three veterans of the fighting in Iraq and Afghanistan suffer from Post-Traumatic Stress Disorder (PTSD), which is a form of anxiety that develops in reaction to physical injury or severe mental or emotional distress, such as military combat, violent assault, natural disaster, or other life-threatening events.

It is widely known that PTSD is common among our troops and veterans. But what is less commonly known is that it’s also very common among cancer patients.

Researchers in the February 2013 Journal of the National Cancer Institute confirm that nearly one in four newly diagnosed breast cancer patients often start manifesting symptoms of PTSD shortly after hearing the words, “You have breast cancer.”

According to the National Cancer Institute, the physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one's body and life are traumatic experiences for many cancer patients that can often lead to PTSD.

I've never been formally diagnosed with PTSD. But I know I have it. No question about it.

I still sometimes have nightmares about my cancer. And I still have a hard time even driving by the hospital where I had my initial chemotherapy. It triggers a lot of emotions within me. Fear, especially, and anger.

The way I see it, every cancer patient has some form of PTSD. It typically is not as severe in cancer patients as it often is for war veterans. But it is very real.

But what matters is that for all the trauma that accompanies fighting cancer, and fighting wars, they also both give us an immeasurable appreciation for the precious gift that is this life.

That old cliché’ is true, you know: What doesn’t kill us really does make us stronger!

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November 2nd, 2013 · 9 Comments

Cancer Patients and the Internet: A Rocky but Lifesaving Relationship

By Jamie Reno

google logoAs cancer patients, we sometimes take the Internet for granted. We act as if it were always a part of our lives. But obviously, it wasn't.

When I was first diagnosed with cancer more than 17 years ago, the Internet was fledgling. Google, the ubiquitous Internet search engine, didn't exist.

There were only a few search options, like WebCrawler, Infoseek and Altavista. But they didn’t provide much help.

And there certainly wasn't anything like CancerConnect.

Information was scarce. I had my doctor, and little else. I was essentially on my own to collect as much information as I could about my type of cancer.

It was far more difficult back then to find and communicate with others who had the same type of cancer or learn about all available treatment options.

All that has thankfully changed. When my cancer recurred just a few years after my original diagnosis, I was able to go online and find the clinical trial that would save my life. Yes, I owe the Internet an immeasurable debt of gratitude.

But now, instead of having so little information, we almost have too much. The Web is an amazing resource. But it can be frustrating and even overwhelming.

It’s both laughable and daunting how much info jumps into our lap when we type into Google key words that we hope will help us make some decisions about our healthcare.

That's why online destinations such as CancerConnect, which are well organized and run by doctors as well as knowledgeable patients and survivors, are so valuable. And CancerConnect's web chats with cancer experts are particularly useful in separating the wheat from the chaff.

On Tuesday, Nov. 5, CancerConnect is offering a live talk that is especially meaningful to me: “What You Need to Know about Non-Hodgkin’s Lymphoma.” This is the type of cancer I've been battling for nearly two decades.

A part of CancerConnect’s Web Chat with an Expert series, the conversation features Dr. Steven Horwitz, a medical oncologist and lymphoma expert at Memorial Sloan-Kettering Cancer Center.

If you or a loved one has non-Hodgkin’s lymphoma, this is something you'll want to check out.

Steven will discuss and answer participants’ questions about NHL at 6:30pm EST. Topics will include:

* Features of these diseases;

* Advances in diagnosis;

* Prognostic tools available to better select treatments for patients most likely to respond;

* New treatments, new drug combinations, and ways to make therapy more effective;

* What's on the horizon: clinical trials and vaccines;

* Survivorship and quality of life.

I should point out that this series is not intended to be a substitute for advice from a healthcare professional, diagnosis, or treatment. Speak to your doctor about any questions you may have regarding your health.

But as the folks at CancerConnect like to say, knowledge is power. And I'd even take that a step further and suggest that knowledge, indeed, is life!

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October 27th, 2013 · 6 Comments

The Profound Connection Between This Year’s World Series and Cancer Patients

By Jamie Reno

world series 2013 logoWhen I started writing my first book, Hope Begins in the Dark: 40 Lymphoma Survivors Tell Their Exclusive Life Stories, one of the first people I contacted to ask if he'd share his story was Boston Red Sox CEO and President Larry Lucchino.

One of the classiest executives in all professional sports, Larry, who I’ve known since he ran the San Diego Padres back in the ‘90s, was diagnosed with non-Hodgkin's lymphoma in 1985.

I was diagnosed with the same type of cancer a decade later.

Larry and I have swapped our share of cancer war stories. And we both often turn to baseball for inspiration and comfort.

I've played, watched and loved the game since I was eight years old. But after I was diagnosed with stage IV non-Hodgkin's lymphoma in 1996 and went through treatment, baseball for me became something even more profound.

It became a celebration of life.

And that's just what I'm doing as I watch this year's World Series between the Red Sox and the St. Louis Cardinals. I'm celebrating life. With every pitch.

This year's series is really special for me not only because of my friendship with Larry, but because Boston's best pitcher, too, is a lymphoma survivor.

Jon Lester, the BoSox pitching ace who won so impressively in Game One of this series, was diagnosed with anaplastic large cell lymphoma, a rare type of lymphoma, in 2006, his rookie season.

When he got the news, Jon naturally turned to his boss, Lucchino, for advice.

The two obviously share a special bond now that goes beyond baseball.

Larry, who underwent a bone marrow transplant at Boston’s Dana-Farber Cancer Institute, has been a tireless supporter of that hospital and numerous other cancer charities and causes ever since.

Whenever possible, he likes to be "Exhibit A" for all people who’ve been told they have cancer who are wondering if there is indeed life after diagnosis.

"The fact is, yes, you can lead a very productive and meaningful life after you are diagnosed," he once told me.

As for Jon, he triumphantly returned to baseball a year after he was diagnosed with cancer and won Game 4 of the 2007 World Series, and the Red Sox went on to sweep the Colorado Rockies.

Jon also founded his "Never Quit" foundation, which supports children with cancer and raises money for research.

Hey, even a diehard Cardinals fan has gotta like that, right?

But wait, Cardinal fans! St. Louis, too, has a touching connection to cancer.

Kathy Day, a lifelong Cards fan and breast cancer survivor, was recently named one of the winners of Major League Baseball's Honorary Bat Girl contest.

This contest honors women who've survived breast cancer and have become advocates for finding a cure.

Kathy was diagnosed with Stage II breast cancer in 1996, and the disease has recurred twice.

Unbelievably, she's also battled melanoma, throat cancer and tongue cancer.

Kathy, who lost her hearing because of a side effect from one of the chemotherapy treatments, was honored during an on-field ceremony at a Cardinals game back on Mother's Day.

Kathy, like Larry, and Jon, and me, loves life, loves baseball, and hates cancer.

I guess the moral to this story is that it doesn't really matter to me which team takes this year's World Series. The Red Sox and the Cardinals are both already winners.

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October 21st, 2013 · 14 Comments

Dying Father Pleads With Drug Companies to Give Him Access to Lifesaving Cancer Treatment

By Jamie Reno

Nick and Lachlan UCH 16 Oct

Nick Auden and son, Lachlan

Nick Auden, who's battling Stage IV melanoma, isn’t trying to make waves. Or enemies. He just wants to live. He just wants to see his kids grow up.

And there's only one drug out there that will give him a fighting chance.

Nick, 40, an athlete, successful businessman and loving husband and father of three young children, has exhausted every commercially available treatment option for his cancer.

His doctors say his only hope now is an experimental immune-system boosting treatment known commonly as "anti-PD-1 antibody.”

To date, Stage IV, or metastatic melanoma, has largely been incurable – approximately 90 percent of patients have not survived. But tumor responses to these anti-PD-1 drugs are among the strongest ever seen in melanoma clinical trials.

Two drug companies, Merck and Bristol-Myers Squibb, are working to get their competing PD-1 drugs approved by the Food and Drug Administration (FDA).

But that could take another year, or longer.

Nick doesn’t have that much time. He needs the PD-1 drug now or he will die within months, say his doctors.

But neither drug company will provide Nick with this treatment. Nick has tried several times to gain access to one of their trials, but medical complications have excluded him.

His best chance of getting PD-1 is on a “compassionate use” basis.

The FDA sometimes allows drug companies to provide their experimental drugs to people like Nick outside of clinical trials. This is referred to as compassionate use.

In my view, if there ever was a case that qualified as compassionate use, it’s this one.

Nick’s wife, Amy Auden, who’s worked tirelessly trying to convince one of these drug companies to give her husband this treatment on a compassionate use basis, says, “I will not stop while I know there is a wonder drug out there that can save my husband's life."

Amy's remarkable savelockysdad.com campaign - Locky is their son, Lachlan - has international support with more than 500,000 signatures on its change.org petition.

But it still hasn't been enough to convince either drug company to do what just about everyone thinks is right.

Both companies say they are working to expand access to the drug as soon as possible. But soon isn't soon enough for Nick.

Nick, who studied at The University of Oxford and is a vice president at Orica in Colorado, has the full support of several of the nation’s leading oncologists, including Jedd Wolchok at Memorial Sloan-Kettering Cancer Center, Sunil Reddy at the Stanford Cancer Center, Omid Hamid of The Angeles Clinic and Research Institute, and Svetomir Markovic at the Mayo Clinic.

Nick also enjoys the backing of high-ranking staffers at the FDA, who've told him that if either drug company honors his request, the agency will approve what is called single-patient access within as little as 48 hours.

Nick says all he wants is access for a single-patient trial. That means that anti-PD-1 would be provided in the same controlled clinical environment as it is currently provided to hundreds of patients who qualify for trials, he explains.

Sarah Koenig, director of public affairs at Bristol-Myers Squibb, told me the company won’t comment on Nick’s case specifically.

She also sent me a statement saying that there is "not enough data on PD-1’s use in humans at any given dose to establish a benefit/risk profile that would support its use outside of a well-controlled clinical trial."

That's simply not true. With all due respect to Bristol-Myers Squibb, to say there is not enough available information on the drug, which is in late phase 3 trials, and to cite safety as the primary concern, is disingenuous.

Several prominent oncologists I've spoken with over the past few days tell me the decision by these pharmaceutical companies to deny Nick's fervent request has less to do with safety concerns and more to do with business and the possibility of jeopardizing FDA approval of the drug.

“I know these companies are working hard to get their drugs approved," says Amy. "But they are in late phase 3 trials. The FDA knows these drugs are safe.”

While it is the the legal right of these companies to withhold their drugs in this case, it raises some serious ethical issues.

Both companies say they want to improve access to health outcomes, and both acknowledge the ethical quandary of having a lifesaving product that is not yet commercially available.

“That’s why they have expanded access programs,” Nick says. “I just don’t understand why they won’t apply these policies in my case.”

Meanwhile, Nick, his family, and about a half million others, including prominent doctors, the FDA, and hundreds of thousands of people who simply care, continue to fight for Nick's life.

Nick doesn’t want money, he just wants the public to help him convince these drug companies to do what's right.

I personally urge you to please take a minute and sign the petition.

And please contact the drug companies directly and respectfully ask them to provide Nick with this treatment.

Here are the contacts:

Bristol-Myers Squibb: Dr. Michael Giordano - michael.giordano@bms.com

Merck: Dr. Scot Ebbinghaus - scot_ebbinghaus@merck.com

In a touching video on the family’s website, son Lachlan sums it up in a way that only a child can. “I want my dad to get the PD-1 drug,” he says, “because then I can do all the things I like to do with him all the time."

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October 15th, 2013 · Leave a Comment

Unsung Heroes of America’s Military Face Increased Breast Cancer Risk

By Jamie Reno

failing our wounded new

Army veteran Marissa Strock

As a journalist, I’ve had the honor of covering our troops and veterans for two decades. And with Veterans’ Day just around the corner, it seems an appropriate time to salute the unsung heroes of the wars in Iraq and Afghanistan: America's women in uniform.

Since 9/11, approximately 300,000 women have deployed. One of those heroes is Marisa Strock (pictured at left), an Army veteran who I have profiled twice for Newsweek.

Marissa, who as part of a Humvee crew in Iraq lost her legs in an IED (improvised explosive device) blast, is an extraordinary person.

Despite her nearly fatal injuries, Marissa has pushed on with her life. She's shown remarkable resilience, courage and optimism.

She's not unlike a lot of cancer patients I know.

But why am I talking about our brave female veterans on my CancerConnect blog? Because there has been a spike in breast cancer among America's female fighters over the last decade.

It isn’t widely known, but studies of women in the U.S. military show that they now have higher rates of breast cancer than women in the general population. There is considerable debate among researchers about how much breast cancer is on the rise in this group.

But it appears to be a significant increase.

Dr. Richard Clapp, a cancer expert at Boston University who also works with the Centers for Disease Control and Prevention, where he focuses on military breast cancer, recently told the Army Times"U.S. military women are 20 percent to 40 percent more likely to get breast cancer than civilian women in the same age groups.”

Why is this happening?

A study on Cancer Incidence in the U.S. Military Population concludes that this unwelcome spike is largely the result of the fact women in our military are more likely to be exposed to chemicals that may be related to breast cancer.

Other risk factors that increase their chances of getting breast cancer include long-term use of oral contraceptives and nighttime shift-work.

But military researchers are currently developing a breast cancer vaccine that is showing remarkable results in clinical trials.

Dr. Elizabeth Mittendorf, at MD Anderson Cancer Center, and Army Col. George Peoples, from Brooke Army Medical Center, have been working on this vaccine, known as E75, since the 90s.

They say it targets breast cancer patients who’ve been treated and are in remission, and can reduce the risk of recurrence by 50 percent.

Military medical researchers are also starting trials to develop vaccines that can protect women from ovarian and uterine cancers.

It's comforting to know that military research is leading to advances that will help our unsung heroes - America's women in uniform - and all women with cancer.

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October 8th, 2013 · 28 Comments

Should Oncologists Give Cancer Patients A Survival Timeline?

By Jamie Reno

Last night, Valerie Harper, the beloved comedic actress from The Mary Tyler Moore Show and Rhoda, poignantly danced her last dance as a contestant on ABC’s Dancing With the Stars. But in her real life, she triumphantly dances on.

Earlier this year, Harper, 74, was diagnosed with leptomeningeal carcinomatosis, a rare type of cancer that was found in a membrane layer around her brain. It’s not brain cancer - that part of the story has been widely misreported - but it is a potentially deadly type of cancer.

Harper was told in March that she had just a few months to live.

valerie harper people

Valerie Harper

Seven months later, she’s still alive and well. Doctors say that, to date, she has beaten the odds.

Being told she was terminal clearly lit a fire under Harper, whose brave and joyous defiance of her own predicted demise begs the question: How often, if ever, should an oncologist give a cancer patient such a time-to-live marker?

When I was diagnosed with stage IV non-Hodgkin’s lymphoma, my original oncologist told me I’d “probably live three to five years, at the most.” That was 17 years ago.

Needless to say, I'm not a big fan of survival timelines. But I do understand that many cancer patients want to know. It's a complicated issue.

Dr. William Mitchell, a benevolent oncologist and head of palliative medicine – sometimes called comfort care or supportive care - at the Moores Cancer Center at the University of California San Diego, says there is no written policy at Moores for giving cancer patients a timeline of survival.

But he suggests most oncologists fall somewhere in the middle between giving all of their patients a survival timeline and giving none of them that information.

"As a doctor, I go where the patient wants to go. I will only talk about this if they want to talk about it," he says. "It can be useful information, of course. But it's important for physicians to remember that these are nothing more than educated guesses. Doctors can’t predict the future. By and large, we don’t have the tools in oncology to accurately estimate prognosis, and I don’t know that this is the worst thing in the world.”

So when a doctor does give us a timeline, should we listen, and take it seriously? Yes, of course, Mitchell says.

But should we assume that his or her words are etched in granite and that we have no chance of beating the odds? Absolutely not, he says.

I personally don’t believe doctors should give patients a timeline unless there is some level of certainty and/or the end date is likely very soon. Like days or weeks. And even then, it should ultimately be the patient’s decision to hear this information, or not.

As cancer patients, we can and do defy mortality statistics, which are often dated and do not take into account the uniqueness of each human body or the latest treatments, both traditional and alternative.

I certainly understand and respect that many cancer patients want to have as much information as they can gather about their health and their future. But Valerie Harper isn't the only cancer patient who has defied the odds.

I’ve met literally thousands of people with cancer these past 17 years who’ve lived longer than their doctors said they would.

I am not trying to give anyone false hope. I'm just saying that timelines can be wrong, and that we should all try as best we can to enjoy the remaining time we have in this life, whether it's a month... or 30 years.

What do you think?

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October 1st, 2013 · 46 Comments

The Lymphoma Cancer Drug That Saved My Life Should Be Saved

By Jamie Reno

My favorite college journalism teacher once told me I should never start a story with the tired cliché, “It was a dark and stormy night.“ Well, sorry professor, but I’m about to break that writing commandment. Why? Because it really was a dark and stormy night in the fall of 1996, when I nervously sat in my oncologist’s office as he gave me the dire diagnosis: "Jamie, you have stage IV follicular non-Hodgkin's lymphoma."

Cancer?! I could not believe what I was hearing.

A few days later, while still in shock and denial, I reluctantly began a chemotherapy regimen called CHOP, with which I am sure many of you are familiar. It made me really sick but put me in remission for about two years. When the lymphoma recurred in early 1999, my doctor wanted me to do chemo again. My response? "Thanks, doc, but no thanks."

lymphoma warriorInstead, I told him I had made the decision to enroll in a phase three clinical trial of a then-experimental treatment called radio-immunotherapy, also known as RIT. The drug, Bexxar, which has long since been approved by the Food and Drug Administration (two RIT drugs have, actually: Bexxar and Zevalin), was virtually unknown at the time.

Even my oncologist was only vaguely familiar with it.

But I had done my homework. I'd learned that the percentage of complete responses among lymphoma patients who had taken RIT in trials was higher than with chemo, the remissions were evidently longer, and the side effects were relatively minor.

It was still a risk, but I was willing to take it.

I’m glad I did. I have not been treated for my cancer since, though last fall, after 13 years of remission, we did discover enlarged lymph nodes in my abdomen and I am now in “watch and wait.” Bottom line? Radio-immunotherapy saved my life.

Since that trial, RIT has been the subject of considerable controversy. Publications ranging from Newsweek, my longtime employer, to the New York Times have reported that RIT has not been utilized as much as it should by lymphoma patients for reasons that have nothing to do with its efficacy.

There are all sorts of reasons for this, ranging from inequitable Medicare reimbursements and other money issues to unfounded fears among patients and even some doctors that this treatment is dangerous and problematic because of its radiation component.

But there is frankly no justifiable reason why Bexxar, the drug that saved my life and the lives of so many others, is now being discontinued by GlaxoSmithKline (GSK).

As I was the first to report on my national news blog The Reno Dispatch back in August, GSK has announced that it will stop producing and selling Bexxar in February 2014.

A spokesperson for GSK told me the decision to discontinue Bexxar involved a "thoughtful and careful evaluation of patient needs and the clinical use of the therapy…. There are other treatment options available for patients with relapsed non-Hodgkin’s lymphoma."

But those other options are not as good.

Bexxar and Zevalin, which is thankfully not being abandoned  by its manufacturer, Spectrum Pharmaceuticals, are clearly the best option for many men and women who have follicular, the most common type of non-Hodgkin’s lymphoma, which is the seventh most common cancer in the United States.

GSK told me that its “commitment to the oncology community will continue through our efforts to develop and deliver other therapies to help address the unmet needs of patients living with cancer."

Really? I don’t see how a company that is committed to cancer patients dumps this amazing drug. The way I see it, GSK never properly marketed or promoted Bexxar- and now it’s about to go away for good. It's a mystery and a tragedy that a cancer treatment that works so well and has such minimal side effects could not be saved.

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July 17th, 2013 · 1 Comment

Cancer Genomic Testing is Revolutionizing Personalized Cancer Care

By The Cancer Navigator

You’ve probably heard of genetic testing for cancer susceptibility, but the more recent and broader field of genomics is also having a wide-reaching impact on personalizing patient care.

To start with the more familiar term, genetics is the study of single genes and their effects. For example, certain inherited mutations in the BRCA1 or BRCA2 genes greatly increase a woman’s risk of breast and ovarian cancer. Awareness of these genes has recently been increased as a result of the attention brought to them by Angelina Jolie and the difficult decisions she faced. Mutations in these genes can be passed down through either the mother’s or the father’s side of the family. If a woman tests positive for a BRCA mutation, there are steps that she can take to reduce her cancer risk or to detect cancer at an early stage.

Genomics generally refers to the study of the study of the entire genome (all of the DNA in an organism). Genomics can consider multiple genes and how they interact with each other and the environment to affect health. Examples of genomic tests are the Oncotype DX test which is now available for use in breast, colon and prostate cancer. The Oncotype DX tests evaluate the activity of several genes in a sample of tumor tissue in order to assess the likelihood of cancer recurrence. This information about recurrence risk is then available to help patients make decisions about their treatment in consultation with their doctor.  Oncotype DX can help many patients avoid receiving chemotherapy unnecessarily, or provide confidence that chemotherapy is the best treatment option.

Similarly, research that combines genomics with pharmacology (pharmacogenomics) is studying how genetic variation affects an individual’s response to particular medications. Variability in genes involved with drug metabolism can have a substantial effect on drug response and drug side effects. Progress in this area is likely to contribute to more individualized, more effective, and less toxic drug treatments.

In short, research in genomics is expanding at a rapid rate and will have a profound effect on many aspects of disease prevention, diagnosis, and treatment. Diseases such as cancer are remarkably complex; genomics provides researchers and physicians with tools to explore and address these complexities.

Learn more about the role of Genomic testing:

The study of genes and proteins can help us understand our risks for various cancers, choose the best treatments when a diagnosis is made, and take preventive steps against disease types for which we may be at high risk.

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