BY ELIZABETH WHITTINGTON | JULY 18, 2014
I'm sure by now you have probably seen or at least heard of Stuart Scott's acceptance speech for the 2014 Jimmy V ESPY Award for Perseverance. Stuart's experience with appendiceal cancer, including qualifying for a clinical trial, was chronicled in a short video that aired before the award presentation.
The video is filled wisdom, humor and inspiration.
"My first thought was 'I'm going to die.' Then about probably 5 seconds later, "I'm going to die and leave Taelor and Sydni. I don't want them to be without a dad. Cancer kills you. People die from cancer."
That was seven years ago. He continued to work at ESPN, travel, exercise, be there for his family... he lived his life. He looked into clinical trials. He underwent treatment. He shared his experience with cancer to the public. He "fought" and promised to "never give up."
Watching it with my family, I noticed some things my family probably may not have: The warrior analogies that many patients and survivors have issues with, the "never giving up," which is from the speech that Jimmy Valvano, who died of cancer in 1993, is so well-known for. Is dying from cancer "giving up" or not fighting hard enough?
Not only was the video moving, but his speech afterward laid those concerns to rest. He was quick to amend what he said in the video.
"Don't give up. Don't ever give up," he quoted Jimmy V's speech again. "I said 'I'm not losing. I'm fighting. I'm not losing.' I have to amend that. When you die that does not mean you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live."
He said he couldn't do the "don't give up" by himself. He mentioned his family, his coworkers and bosses, his medical team, strangers that lift him up, especially when he was too sick to "fight" by himself, which apparently was as recent as last week.
Kudos to Stuart Scott to not only give an inspiring speech about living with cancer, but also showing his vulnerability. Living with cancer is not all about fighting, never giving up, being strong, and hopeful all the time. Scott shared his moments of weakness and doubt, which may have been just as inspiring as him promising to never give up.
You can view the video here.RELATED POSTS
BY GUEST BLOGGER | JULY 11, 2014
In 2011, Army veteran Douglas Chase was diagnosed with brain cancer. A few months later, the cancer had spread. Chase and his wife Suzanne, who lived in Acton, Mass., drove to Boston for his treatments. It eventually became too much, and Suzanne decided to apply for care at a nearby Veteran Affairs (VA) hospital to make him more comfortable.
They didn't hear back from the VA hospital administration, and Chase, a Vietnam veteran, died in August 2012. Shortly afterward, Suzanne filed for benefits from the VA to assist with funeral expenses; however, it was denied because Chase wasn't treated at a VA hospital.
Suzanne wanted to "put it all behind" her.
About a week ago, she received a letter from the VA addressed to her late husband. After two years, they offered her husband the opportunity to schedule an appointment. It was requested that he respond quickly.
This story has most Americans shocked; I'm not one of them.
Honestly, I wonder if her husband would've received the proper care and treatment had he'd been able to schedule an appointment right away.
Why do I ask this? My family went through a very similar situation with my grandfather (whom we refer to as Papa), a Korean veteran. Sadly, I never had a chance to meet him.
In 1985, Papa was experiencing back pain, and went to see a doctor at a VA facility. The doctor felt around his back and said it was a muscle sprain. He was given pain medications and a whirlpool jet bath. This went on for two years. In that time, not one X-ray or any additional tests were done.
My grandparents didn't think about going elsewhere for treatment. They trusted that the doctor was telling them the truth. In January 1987, they found out the truth. Papa was having chest pain one night, and my grandmother took him to the emergency room. An X-ray and additional tests were done. After sitting in the waiting room for a couple of hours, my grandmother was allowed to see him. When she walked into his room, he started crying and said, "I'm sorry." Before she could even ask "for what?" the doctor walked in and broke the news to her.
Papa had a large tumor on his kidney that had metastasized to his lungs. "There's nothing we can do," the doctor told them.
Despite what had happened, my grandmother held no anger toward the VA. "I was too busy being scared," she says.
My grandparents still wanted to do "anything and everything" they could to help him. For the next few months, he underwent chemotherapy at a VA hospital, the same system that told him for two years he only had muscle sprains. In July 1987, at age 55, Papa lost what little battle he was able to fight.
I read Chase's story on Wednesday, July 2, 27 years to the day that Papa passed. Some of my family members, particularly my mom, wanted to sue the VA. However, at the time, suing the government wasn't realistic, my grandmother says. "You didn't sue the government."
Currently, there are over 100,000 veterans who have been waiting to schedule an appointment. Some have been waiting for more than three months. What scares me is thinking that some of these people could have something seriously wrong with them requiring and deserving immediate attention.
Thankfully, the Senate passed a bill in June to allow veterans to seek private care. Criminal investigations of the VA's actions are also ongoing.
Another area that concerns me is how the men and women on active duty are receiving medical treatment. Or are they receiving treatment? Those on active duty have a harder time getting care off a military post, if that's what they prefer. If they wish to receive treatment elsewhere, they have to request an "off-post referral." However, these can be hard to obtain.
A friend of mine in the military was denied an off-post referral to see a specialist for severe knee pain. He had to wait a month just to schedule an appointment. Then, he had to wait a month between a MRI and other appointments.
With cancer, time is very fragile. It's very likely that someone with back, knee or stomach pain isn't going to automatically assume they have cancer, unless you work in the industry. It's important that people get in to see their physicians in a timely manner to receive the proper diagnosis.
Something ironic about the letter sent to Suzanne Chase is that it stated that the VA is, "Committed to providing primary care in a timely manner and would greatly appreciate a prompt response. " This failed both my and the Chase family.
OK, now here comes patriotic cliché me.
In my opinion, the men and women in the military, retired or active duty, give and sacrifice more for this country than any of us ever will. It truly saddens me to know the number of veterans who have been on a waiting list for months. This situation can get more difficult for active duty military because there's not much they can do if they're not pleased with the wait or treatment. It's not like they can file a complaint to Uncle Sam. They have to do what they're told.
Just like the military, I think it's only fair that the VA do what they're supposed to do; protect and serve those who protect and serve.
Jennifer Nassar is a graduate student at the University of North Texas. She is a summer intern for CURE magazine.RELATED POSTS
BY ELIZABETH WHITTINGTON | JUNE 1, 2014
This morning, the National Patient Advocate Foundation formally released its plan to increase cancer innovation in a goal to get cancer breakthrough therapies to patients sooner.
NPAF, a national non-profit that helps patients receive access to quality cancer care, created the Project Innovation movement to enhance access to clinical trials, policy changes, research collaborations, data sharing and funding options.
Nancy Davenport-Ennis, a two-time breast cancer survivor and founder of the NPAF, said they are working with researchers, advocates, doctors and legislators to find solutions to overcome the obstacles slowing down cancer innovation, including a drop in federally funded research and private investment in biotechnology and inefficiencies researchers and companies encounter when pushing treatment breakthroughs to the clinic. The group released its paper "Securing the Future of Innovation in Cancer Treatment" outlining how it will work to overcome these obstacles and more.
Launched at the 50th anniversary of the annual meeting of the American Society of Clinical Oncology, the program coincides with ASCO's theme this year of "Science and Society." In addition to improving scientific funding and research, scientists and activists are appealing to the public at large to get behind better cancer care--research, treatment, screening, access to healthcare, survivorship and overall quality of life.
"I thought what a wonderful instance of serendipity," she says. "All stake holders will come together with issues that ASCO is talking about, and those same stakeholders know the importance of innovation. Without innovation, we don't find cancer cures."
The NPAF is partnering on the program with legislators, researchers, other non-profits and oncology organizations, including The Oncology Nursing Society, The Association of Community Cancer Centers, The Colon Cancer Alliance, Cancer Support Community and Friends of Cancer Research. The group is also calling on patients, survivors, advocates and caregivers to share their own personal stories of how cancer innovation has impacted their lives.
"We are on a cusp of major transition," she says. "We feel that Project Innovation can energize the American people ... With the launch of the program, it's an open invitation for anyone in America to join us."RELATED POSTS
BY LINDSAY RAY | APRIL 30, 2014
On April 29, the Food and Drug Administration (FDA) granted accelerated approval to Zykadia (ceritinib) to treat patients with a subtype of advanced non-small cell lung cancer (NSCLC).
Zykadia inhibits the mutated protein anaplastic lymphoma kinase (ALK), which is caused by an abnormality in the ALK gene and can promote abnormal cell growth. This abnormality is present in 3-7 percent of patients with NSCLC. Zykadia is specifically approved to treat patients with this abnormality who no longer respond to Xalkori (crizotinib), which is also approved to treat ALK-positive NSCLC patients.
Xalkori was the first drug approved for ALK-positive lung tumors and has since become a standard of care for this patient population. However, once patients become resistant to the drug, there has been no other approved therapy to offer them until now.
Zykadia's safety and effectiveness were established in a trial of 163 participants with Xalkori-resistant, ALK-positive NSCLC. All participants received Zykadia, and about half of the participants had their tumors shrink, a result that lasted for a median of approximately seven months.
This decision comes four months before the review deadline. The accelerated approval review process allows patients earlier access to promising drugs while the manufacturer conducts confirmation trials. Zykadia was also given a breakthrough therapy designation, which is also designated to speed promising therapies through the review process, and is the fourth drug to be approved with this designation. (You can read more about this new designation here.)
Common side effects are mostly gastrointestinal, including diarrhea, abdominal pain, nausea and vomiting. Increased liver and pancreatic enzymes and glucose levels might also occur.
For more information, visit Zykadia.com or call 888-669-6682.
And for more information on lung cancer and genetic abnormalities, read CURE's Spring 2014 feature "Research Reveals New Frontiers in Lung Cancer."RELATED POSTS
BY LINDSAY RAY | APRIL 22, 2014
On Monday, April 21, the Food and Drug Administration approved Cyramza (ramucirumab) to treat patients with advanced stomach cancer or cancer where the esophagus meets the stomach (gastroesophageal junction adenocarcinoma). This approval includes patients with inoperable cancers and those with metastatic disease after treatment with platinum- or fluoropyrimidine-based chemotherapy.
Cyramza is a type of drug known as an angiogenesis inhibitor, which means it blocks the tumor's blood supply.
This past October, the therapy was given priority review status (meaning the FDA would make a decision within six months) after promising clinical trial results and because it met an unfilled need. This approval makes Cyramza the first approved single-agent treatment for stomach cancer after it has progressed following initial therapy.
The FDA based the approval on results from the REGARD trial, an international, phase 3 study in which 355 previously treated patients with either stomach cancer or gastroesophageal junction adenocarcinoma were randomly assigned to receive either Cyramza or best supportive care. Treatment with Cyramza improved median overall survival by 1.4 months compared with those receiving placebo.
Earlier this year, data from another study pointed to further benefits of Cyramza therapy. The phase 3 RAINBOW trial looked at adding Cyramza to paclitaxel when treating these diseases after prior therapy. The combination extended median overall survival to 9.63 months compared with 7.36 months for patients who received paclitaxel plus placebo. Furthermore, the combination of Cyramza and paclitaxel also prolonged progression-free survival: 4.4 months compared with 2.86 months.
Common side effects of Cyramza include diarrhea and high blood pressure.
For more information, call 800-545-5979.RELATED POSTS
BY GUEST BLOGGER | JANUARY 20, 2014
After a tumultuous year of debates and shutdowns, Congress has passed legislation that will fund cancer research and education--but does the bill do enough? An omnibus appropriations bill that will fund federal agencies and programs for the remainder of this fiscal year recently passed the House and Senate. Many news accounts talked about the National Institutes of Health (NIH) as a "winner" in this particular spending deal, with an increase of $1 billion in funding. In fact, funding for health research--including cancer research--is falling behind.
Let's start with the good news: NIH will receive an additional $1 billion in this fiscal year, a 3.5% increase from the previous year. Likewise, funding for the National Cancer Institute (NCI) will rise by $12 million. Some federal programs that fund cancer research, such as the Congressionally Directed Medical Research Programs, saw substantial increases in funding.
The bad news is that these increases don't offset years of uncertainty, budget cuts and too-small appropriations. Although funding is rising for medical research and education programs, most are still below pre-sequester funding levels from fiscal year 2012. Federal funding for cancer research has been flat for more than a decade, and when adjusted for inflation, it is actually lower than it was before the NIH budget doubled between 1998 and 2003.
The ugly? Years of irregular appropriations have seriously hampered cancer research. Projects that could yield amazing new breakthroughs just aren't getting off the ground, largely because there isn't enough funding. In addition, the uncertainty about how much money Congress will appropriate for cancer research--and when in the world they will pass a funding bill--has made federal agencies extremely cautious about giving out the money they do have. On the other side, biomedical research universities are also shy about starting new research projects and hiring new staff due to federal budget uncertainty. In fact, 70% of universities report delaying new projects and 35% report cancelling them all together. While the current funding bill is a step in the right direction, the road to this deal included a year of substantial funding cuts and a government shutdown.
We are happy to see small improvements in funding for cancer research, but this isn't the time to rest on our laurels. Most advocates expect next year's budget battle to be even harder. We will need to organize and fight so that we don't lose more ground in the next appropriations cycle.
How can you help? As a cancer survivor, your voice carries tremendous weight with your elected officials. Get involved with patient advocacy organizations, like the Ovarian Cancer National Alliance. We tell our community when Congress is considering appropriations and give you easy tools to share your cancer journey and explain the importance of funding cancer research. We also bring survivors to Capitol Hill throughout the year, where they can meet face-to-face with policymakers.
People like you have helped us regain ground on cancer funding. Now we need to unite and speak out to ensure that these gains won't slip away in the coming year. Want to join us? Visit ovariancancer.org to find ways you can get involved.
Calaneet Balas is the Chief Executive Officer of the Ovarian Cancer National Alliance, an organization that aims to educate health care professionals and raise public awareness of the risks and symptoms of ovarian cancer. The OCNA advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices and life-saving treatment protocols.RELATED POSTS
BY ELIZABETH WHITTINGTON | JANUARY 17, 2014
It's been 50 years since the initial release of the Surgeon General's Report on Smoking and Health. This report provided a scientific basis for us to work toward reducing the public health impact of tobacco use. Since then, 30 additional Surgeon General reports on tobacco have been released.
Today's report, "The Health Consequences of Smoking--50 Years of Progress: A Report of the Surgeon General, 2014," adds new evidence that smoking is bad for us, including that it increases the risk of liver cancer, colorectal cancer, diabetes and rheumatoid arthritis. Secondhand smoke increases the risk of stroke. The report notes that while the evidence is suggestive, it's insufficient to conclude breast cancer risk increases with smoking and exposure to secondhand smoke. However, smoking increases the risk of cancer death. And in cancer survivors, it increases the risk of dying from other diseases.
Measures that have been put into place since that first report have more than halved smoking rates. The public's view on smoking has changed drastically. Strategies to reduce tobacco use have included smokefree laws, taxes on tobacco, smoking cessation aids and support and public awareness campaigns. Those measures continue to become more powerful and prevalent.
The report also notes the success of smoking cessation strategies, including nicotine replacement therapy, such as gums, patches, and even electronic cigarettes, which contain nicotine, but not tobacco. During the past few years, electronic cigarette use among current cigarette smokers increased from 9.8 percent to 21.2 percent. While it may be used by smokers in places that don't allow tobacco smoking, I think it's safe to say some current smokers are using the tool as a cessation device. But is it working? Opponents consider it a "gate-way drug" to tobacco use and another marketing tactic by tobacco companies to get people hooked on nictotine, but its use in cessation should be explored. Studies to examine health implications are also needed.
The report also contains a consumer booklet, "Let's Make the Next Generation Tobacco-Free," which aims to helps parents talk to their children about tobacco use.
You can read the full report here.RELATED POSTS
BY KATHY LATOUR | JANUARY 14, 2014
There has been quite the outcry in the past two days about the choice of breast cancer patient Lisa Adams to tweet and blog her dance with death. I don't say dance lightly because Lisa is a writer, and to read her blog is to see her take the intricate steps required in life's final tango to sidestep the pain of her numerous metastases.
I haven't seen her tweets, but I can imagine that someone with such control of the language is able to say a lot in 140 characters.
Whether blog or tweet, it's her decision to die so publicly that prompted writer and columnist Emma Keller to take her to task in a column on Jan. 8 in the Guardian. Keller, who has also had a run with cancer, which she has also blogged about, is somehow offended that Adams is dying so publicly. When I read Keller's column, I admit that I had a fairly strong reaction to it: So where is it written that there are rules on how to die?
Adams concedes that tweeting helps with the pain because it gets her mind off the pain. And she is unapologetic that she doesn't go on and on about her children in the way that, it seems, Keller wants her to. I think I can see where Adams is coming from. Dying is a singular journey, and right now it's between her and her body to make each day count.
If it had stopped there, it wouldn't have become the firestorm that it did. Personally, I chalk it up to someone who has had breast cancer reading her worst fear – that her cancer might come back and she might end up where Adams is. It's the explanation for calling herself "embarrassed at my voyeurism." And in the next sentence she asks if there shouldn't be boundaries for this kind of experience, and in that I read, "please go and die quietly so I don't have to look at what I might have to endure." Then she asks again, "Why am I so obsessed?"
She is obsessed for the same reason we all are with death. We want to know how to do it. And for women with metastatic breast cancer, all the books from experts still aren't enough to figure out their own final turns if they know it's in their future. What Adams has done is offer women who may be facing the same fate some options, which takes a lot of courage if you ask me.
Keller's husband Bill also had to join the discussion. He jumps in with his own column about the joys of recognizing when it's time and letting go as his father-in-law did.
He waxes prolific on going quietly into the night when your time comes and accepting the inevitable.
Come on, Bill. Who are you to tell someone how to die? And to compare an elderly man at the end of his life with a young mother is just plain crazy. But even then I tell myself to shut up. Because when it is all said and done, unless you have died before your time and left small children when your life's wish is to raise them – well you have no right to say anything. If it upsets you, stop reading.
For me, I will now follow Adams until her death, watching a brave woman who has found a way to stay with us until the very last minute, which many people want to do. And in her blogs and tweets she has left a roadmap for the women who will come after her. If you don't believe me, read the comments that follow her blogs.
And one last thing. Shame on the Guardian for taking down Keller's commentary.RELATED POSTS
BY LINDSAY RAY | SEPTEMBER 30, 2013
Ahead of schedule, the Food and Drug Administration (FDA) approved Perjeta (pertuzumab) to treat patients with early-stage breast cancer prior to surgery (neoadjuvant) on Sept. 30. This comes on the heels of a unanimous vote from the Oncology Drugs Advisory Committee to recommend the drug for approval. Perjeta was approved just last year to treat patients with metastatic HER-2 positive breast cancer.
Perjeta is the first drug approved for the neodjuvant treatment of cancer and provides another treatment option for patients at high risk of a breast cancer recurrence, metastasis or of dying from the disease. Perjeta is still intended for HER-2 positive patients, but has now been extended to include those with inflammatory, locally advanced or early-stage breast cancer who are at high risk. Perjeta is to be used in combination with Herceptin (trastuzumab) and chemotherapy, and depending on the combination used, chemotherapy can be used after surgery as well. Herceptin, however, should be continued after surgery to complete a year of treatment.
Perjeta was approved under the FDA's accelerated approval program, which provides patients access to drugs for serious conditions while further ongoing trials are conducted. The drug was approved based on a phase 2 trial in which 417 participants were randomly assigned to receive one of four treatment combinations prior to surgery (given every three weeks for four cycles of treatment): Herceptin and docetaxel; Perjeta, Herceptin and docetaxel; Perjeta and Herceptin; or Perjeta and docetaxel. Thirty-nine percent of those receiving the Perjeta, Herceptin and docetaxel combination achieved a complete pathologic response, which means there was no detectable invasive cancer in the breast or lymph nodes. Only about 21 percent of those who received Herceptin plus docetaxel achieved a complete pathologic response. Perjeta is also the first drug approved based on a pathologic complete response instead of traditional endpoints, such as survival data and progression-free survival.
A large, phase 3 trial, called APHINITY, is ongoing to confirm these results and also examine the long-term effects of Perjeta. Approximately 4,800 participants with HER-2 positive breast cancer who have received prior breast cancer surgery and are at high risk for cancer recurrence are enrolled. Results from this trial are expected in 2016. Perjeta is still being further explored for treating breast cancer as well as other HER-2 positive cancers, colorectal and gastric cancers.
When asked for a comment, Lisa Carey, medical director of the UNC Breast Center in Chapel Hill, N.C., said that it is important that the FDA is recognizing the need for more flexible and nimble approaches. "This is a good one since the neoadjuvant trial was well designed and completed," she says. "The adjuvant trials, which will define this in terms of more clinically meaningful results, are finished collecting patients and just need to mature. So this is a good proof-of-principle for using the neoadjuvant approach as an intermediate."
However, some questions still need to be answered. Carey explains: "The questions center on the use of such a short duration of Perjeta since the augmentation of pathologic complete response with Herceptin was associated with improved outcome but with a year of therapy, not weeks. Also how can the heterogeneity of HER2+ disease impact response to single or dual HER2-targeting, and how can we get smarter since this is now an extremely expensive approach that needs a better selection strategy."
As Carey noted,the Perjeta-Herceptin combination will also carry a hefty price tag--it is expected to cost between $27,000-$49,000 for 9-18 weeks of therapy. However, there are patient assistance programs in place that might be able to help off-set the price.
Common side effects for participants receiving the Perjeta-Herceptin-docetaxel combination included hair loss, a decrease in white blood cells (neutropenia) and nausea. Other side effects included allergic reactions, hypersensitivity and decreased cardiac function.
For more information, visit Perjeta.com or call 855-737-5382.
For more information on HER-2 positive breast cancer visit: "Research Unravels New Ways to Treat HER2-Positive Breast Cancer".
Editor's Note: This blog was updated on Oct. 1.RELATED POSTS
BY ELIZABETH WHITTINGTON | SEPTEMBER 30, 2013
With enrollment "opening day" of the health insurance exchanges happening on Oct. 1, there is a lot of confusion, misinformation and information overload. Here are a few resources to help you sort it out and get organized.
> The Cancer Support Community and the Association of Community Cancer Centers, along with 16 other cancer and patient advocacy organizations, produced the Cancer Insurance Checklist. This worksheet was created to help people--with either a history of cancer or high risk of cancer--shop for insurance coverage in their individual state's health insurance exchange. The website also includes a list of resources and a glossary.
> The American Cancer Society and its advocacy arm, ACS Cancer Action Network, have put together a fact sheet of tools and information for patients and survivors to help them navigate the Affordable Health Care Act. You can find it at acscan.org/healthcare/learn.
> The LIVESTRONG Foundation has produced a five-step guide to insurance enrollment. It is also partnering with the advocacy group Young Invincibles and the social action news site RYOT to reach the young adult population and encourage them to get insurance coverage. On Oct. 2, the three groups will host an in-person and live Google+ Hangout session geared toward helping cancer survivors navigate healthcare enrollment.
> Naturally, the homepage for WhiteHouse.gov has recently been filled with information on the healthcare law, including a short video of "What Obamacare Means for You," infographics and a summary of healthcare choices and premiums expected in several states (whitehouse.gov/healthreform/map). Healthcare.gov also provides information on the marketplace, along with a tool to determine if a user would qualify for lower insurance costs.
> NPR.org has a great assortment of articles that explains many of the current and upcoming healthcare law pieces.
Do you know of any other tools that help cancer patients and survivors navigate the insurance process? If so, please share!RELATED POSTS