SU2C Survivor Stories: Fred Carter Stands Up
Posted on July 2, 2012 10:01 AM
In September 2011, Fred Carter was diagnosed with stage four stomach cancer. Throughout his diagnosis and intense cancer treatment, Fred held on to the hope that he would be strong enough to ride his motorcycle in the summer of 2012. As he finished treatment and summer grew closer, Fred made plans to do his "Bucket List Ride." His goal: to reach the four corners of the United States by motorcycle with his wife Rhonda at his side.
SU2C recently had the opportunity to speak with Fred about his cancer experience and follow him on his "Bucket List Ride."
How did you discover you had stomach cancer?
With stomach cancer, unless you find it by accident, you don't usually see any symptoms until it's at stage three or four.
One of my first symptoms I noticed was the difficulty I had swallowing and burping. This went on for several weeks before I was diagnosed. As time went on I began to notice that certain things in my body weren't quite right. The symptoms continued and one day I burped up a blood clot.
I immediately went to the hospital and the doctors sent me home thinking it was something else gastric related, not cancer. By Tuesday I was in the hospital again and was given a CT scan. When I heard the word "malignant" I knew it wasn't good news. I was diagnosed with stomach cancer and about four days later I began my treatment combination of chemotherapy and radiation.
What was your reaction to your diagnosis?
When I got the diagnosis one of the first things I thought was how grateful I was. I have been meditating for almost 18 years and have always made an effort to try to live well. My tag line for nearly everything is: Life is good, live it well, and thanks for listening.
A life well lived is one that's appreciated. So when I got the diagnosis I was really grateful that I'd been living life this way for so long. It wasn't that being diagnosed with cancer didn't bother me; I just sort of decided to appreciate the life I was living and roll with it.
What was going through treatment like for you?
The radiation and chemo together made me the most miserable I've been in my entire life. There were points where I was throwing up a lot and got really dehydrated. I had mouth sores that were painful and had trouble even getting down water. A lot of the time I felt like I was battling the side effects from the chemo and radiation treatments more than I was fighting the cancer itself.
At one point I broke down and told my wife Rhonda, I didn't think I could do it anymore.
What kept you going?
It would be impossible to pin this down to just one thing. Of course, my wife, Rhonda is my biggest supporter. She's the one person who has been there every moment, and I couldn't begin to describe the things she's done so that I can stay focused on getting through this and getting better. And, I am extremely fortunate to have an incredible network of family and friends, (and cyber-friends!) who have given me strength and support as well.
I would say that it's the human connection that is the bottom line, but that would leave out another critical part of my treatment. One of the things that Rhonda decided when I was going through treatment was that she wanted to get a dog. I wasn't sure I was up for a dog in the house, but I thought she ought to have one. We ended up getting a Yorkshire Terrier and named it "Bu." When we got her she was only three quarters of a pound and when I was at my worst Bu really helped me keep going. It was incredible.
How would you describe your condition now?
I guess you could say I am a survivor. I went through the maximum amount of allowed chemo and radiation treatments. My tumors and the lymph nodes have been shrinking and with each successive CT scan things have gotten better. I still have difficulty swallowing, and my hands and feet bother me some, but it's not going to stop me from riding.
How did you come up with the idea for "My Bucket List Ride?"
The survival rate for stomach cancer isn't great. So when I was diagnosed I was sad because riding season was coming to an end and I wasn't sure if I would make it to the next summer. As I kept going I decided that if I made it to the summer of 2012 I would do as much riding as I could. That's how I came up with the plan to travel to the four corners of the U.S. It was something that had always been on my bucket list and I figured that this was the best, and maybe the only, time to do it.
How did you decide to create a team for the ride on SU2C?
I'm excited about the ride but I also wanted to do some good with it. I'm a Boston Red Sox fan and I had heard about SU2C while watching the games on television. I went to the site and created a team to encourage my friends and family to follow my journey, help raise cancer awareness and donate to SU2C research. I personally plan to donate $1 for every 100 miles we travel. I'm also going to donate $50 for every corner we reach.
I know it's not a sure thing I will get to all four corners, but I'm reasonably healthy for a guy with cancer and I think I can make it. People tell me that they are amazed at my attitude, but honestly I wouldn't know how else to be.
My team has about 40 members right now and it's very exciting to have such an outpouring of support. I've had people praying for me on all continents. It's pretty cool.
What is something that you've personally done that's helped you deal with your cancer?
I've never gotten angry. I just found that there wasn't anything to get angry at. Before cancer, I had a plan to live to 88 years old. Cancer changed my plan. If I am lucky I will live another three or four years.
My lifespan got shortened quite a bit, but in the time I've got left I want to do the most good.
How has cancer changed you?
It's changed my perspective a little bit because it shortened my view of the future. It's interesting because now I don't worry so much about it. In life, none of us know when our time will be up. Getting cancer is certainly not something I would put on my list of things to do, but it's certainly been an incredible experience, and has truly enhanced how thankful I am for the life I've lived and every day going forward.
I also think that for a long time I've lived well, but I want to die well too. My goal is to be able to die with as much grace as I try to live with and to keep my attitude and spirits up for whatever comes next. I have a great life. I'm so glad that I get to be here today and I'm glad I get to be me.
Since Fred and his wife Rhonda began their journey in May, they have completed their trip and reached all four corners of the United States! Follow his journey and join his team My Bucket List Ride on SU2C.org.
You can also check out Fred and Rhonda, in an interview post ride, in their local news!
"Life is good, live well, and thanks for listening."
The Amazing Spider-Man Stands Up
Posted on June 28, 2012 10:20 AM
On Monday, June 25 The Amazing Spider-Man 's cast, director and producer took part in the Empire State Building lighting ceremony, kicking off "Be Amazing, Stand Up and Volunteer" (www.Beamazing2012.com
), in support Stand Up To Cancer. SU2C Co-founder Kathleen Lobb spoke about the late Laura Ziskin, producer of the Spider-Man films and SU2C Co-founder:
It is an honor to be here today w/ all of you, representing Stand Up To Cancer, and especially to be with Andrew, Emma, Rhys, Denis, Marc, and Matt...
One person was central to both the making of the Spider-Man movies and Stand Up To Cancer - our beloved Laura Ziskin. Just over a year ago, we lost Laura to breast cancer, while she was in the midst of producing The Amazing Spider-Man with these extraordinary actors.
Laura was a gifted multi-tasker...At the very same time, she was an extremely active co-founder of Stand Up To Cancer...She really was our guiding light.
Laura was hellbent on making sure everyone understood cancer's ubiquity - that one in two men and one in three women in this country will be diagnosed in their lifetimes. She brainstormed endlessly about ways to build our grassroots movement - how we could engage each and every person in the fight against this disease.
Laura would be so touched that SONY and all of you have embraced Stand Up To Cancer...Thank you for encouraging the legions of Spidey fans out there to "Be Amazing, Stand Up and Volunteer"...Having this incredible cast do something as iconic as light up the Empire State Building to spread the word - it doesn't get any better than that! On behalf of everyone at Stand Up To Cancer, thank you all.
From left: Rhys Ifans, Denis Leary, Emma Stone, Andrew Garfield, director Marc Webb, Stand Up to Cancer co-founder Kathleen Lobb and producer Matt Tolmach inside the Empire State Building.
With You, We Stand: June 18, 2012
Posted on June 18, 2012 9:55 AM
Last week Stand Up To Cancer mourned the loss of Margaret Edge. We were fortunate enough to meet Margaret in 2010 when she participated in a PI3K clinical trial led by Dr. Eric Winer. Margaret was featured on the SU2C 2010 show and described herself as a "mom and a horse woman." When she spoke of being a trail participant Margaret said, " The clinical trials give us hope, a reason to keep fighting. What they learn from me they can pass on to the next moms and daughters." With the help of Dr. Winer, Margaret was able to survive for ten years after her cancer metastasized. Margaret fought to be there for her son for as long as possible. "Her love of her husband, son, family, and friends got her through the toughest of times," remembers sister-in-law, Jennifer Burd. "She was a brave woman who will be forever cherished in our hearts and memories. We have only begun to miss her."
It was five years ago when Robin Roberts faced and overcame a breast cancer diagnosis. This week in front of millions the "Good Morning America" anchor announced that she has myelodysplastic syndrome (MDS), a blood disease, that was likely caused by her cancer treatment. She explained her diagnosis and treatment with great optimism. "My doctors tell me I'm going to beat this -- and I know it's true," she said in the statement. "If you Google MDS, you may find some scary stuff, including statistics that my doctors insist don't apply to me. They say I'm younger and fitter than most people who confront this disease and will be cured." At SU2C we regard Robin as a friend. She has supported Stand Up To Cancer since it's inception and we stand in support of her as she enters treatment.
MTV Star and MedGift founder Diem Brown has been diagnosed with a recurrence of ovarian cancer. As a young adult diagnosed with ovarian cancer Diem, now 28, candidly shared her cancer experience with MTV. Diem is also the founder of MedGift, a charity organization providing gift registry services to sick patients. "Any patient, from cancer to car accidents to wounded warriors, can list their hospital bills, ask for wigs, wheelchairs, certain foods or cosmetics. Their friends, family and co-workers can then go on and select an item from their patient gift registry, without even having to ask," she told Fox News in February. "I wanted to make MedGift mainstream, so the second someone has a medical misfortune, they know where to turn." Upon her latest diagnosis Diem encouraged her fans to get yearly exams and tweeted "I know I will be fine I beat Cancer once & I'm gonna do it again! I know God has a reason for every speed bump in life & I'm ready."
SU2C is inspired by stories like these and millions of others. Cancer takes one person every minute and to wait for someone else to save our lives and the lives of those we love is no longer an option. At SU2C, we believe that together, we can end this disease by becoming one unstoppable movement. The end of cancer begins with you.
Learn more about the groundbreaking research SU2C is funding and how you can get involved today.
Communication with Patients Is Key in Treating Cancer
Posted on June 14, 2012 2:46 PM
By Richard Lobb
(Dr. Siddhartha Mukherjee, left, was introduced at a conference in Washington by Dr. Margaret Foti, CEO of the American Association for Cancer Research (AACR). Photo by R. Lobb.)
At a recent Washington conference focused on public policy changes required to sustain the rapid progress being made in cancer research and treatment, one speaker touched on a timeless concern: the need for open and honest dialogue between physicians and the people they treat.
"Doctors need to communicate more clearly with their patients," cancer specialist and Pulitzer Prize-winning author Siddhartha Mukherjee, M.D., said after a talk at the "Turning the Tide Against Cancer Through Sustained Medical Innovation" conference. Sponsored by Stand Up To Cancer's scientific partner the American Association for Cancer Research, the Personalized Medicine Coalition, and Feinstein Kean Healthcare, the meeting brought together clinicians, researchers, patient advocates, policymakers and representatives of industry.
"Physicians need to be honest and thoughtful, especially about what is achievable with the cancer therapies available," he said. "It is better to do that than to put on a show of bravado and then fail."
Last year, Dr. Mukherjee was awarded the Pulitzer Prize for general non-fiction for "The Emperor of All Maladies: A Biography of Cancer." SU2C has acquired the TV and film rights to the book, which is both an account of the diagnosis and treatment of cancer through the ages and a personal journal of one young physician's coming-of-age as an oncologist. The stories of Dr. Mukherjee's patients illustrate the struggle in recent years to understand the basic nature of cancer and to develop effective therapies.
In addressing the conference, Dr. Mujherjee noted that "Personalized Medicine" is the future of cancer therapy because of the tremendous variations in the same types of cancer in different patients. Cancer is rooted in genetic mutations and the same type of cancer can exhibit many different combinations of mutations in different patients - and sometimes in different tumors in the same patient.
"The central problem in cancer treatment today is, how do we deal with combinational diversity and how do we respond with combinational personalized medicine," he said.
Dr. Mukherjee was introduced by Dr. Margaret Foti, CEO of the American Association for Cancer Research, who also spoke about the emphasis on personalized treatment.
"Progress against cancer has reached a critical inflection point; where our ever-increasing understanding of the molecular basis of disease, combined with our relentless effort to apply these insights into clinical care, is forming the foundation of personalized cancer care," she said. "However, policy changes are going to be required to accelerate this progress and improve patient care in an era of health care cost containment."
In dealing with the bewildering complexity of modern medicine, Dr. Mukherjee said, doctors should be honest and straightforward with their patients. Unless patients are given the facts, they sometimes turn to the "myths" about cancer and fall prey to conspiracy theories about cures that are supposedly being suppressed.
"We owe our patients the truth in plain language," he said. "If we can't give them plain language, who can?"
SU2C Survivor Stories: Noriko Kneip Stands Up
Posted on June 4, 2012 9:41 AM
Noriko Kneip, 43, was first diagnosed with stage four non-Hodgkin lymphoma when she was 15. After a full recovery, she was later diagnosed with cervical cancer and breast cancer in her thirties and forties.
SU2C had the opportunity to speak with Noriko and learn more about her journey. She is now cancer free, and training for the New York Marathon as a member of Team SU2C.
How did you learn you had non-Hodgkin lymphoma at 15?
I was living in Japan at the time. The protocol in Japan was to have yearly check-ups that schools would fund and organize. There was an X-ray truck that came to my school, and that took chest X-rays of all of the students. My cancer was identified during the X-ray. At first they thought it might be a mistake, but it was stage IV.
At the time, what did you know about this type of cancer?
I had no clue what it was. I was so young and so oblivious, and the Japanese doctors at the time operated differently. They weren't forthcoming about the diagnosis, nor were my parents. I took a year off from school. I was in the hospital and just went along with the treatment plan my parents and doctors suggested. I didn't know exactly what my prognosis was, but it never occurred to me that it was life threatening. My parents remained so normal and optimistic, so I never had the fear of dying. I figured once I finished the treatment, I would be cured.
How did you later learn that you had breast cancer and cervical cancer?
I went through college, got married and settled down in Seattle. My treatment for lymphoma was really aggressive. I had done several rounds of really intense chemo, along with some intense radiation. At the time they didn't warn me that it's actually quite common for children who have cancer to develop a secondary cancer as a result of the radiation. I had been having regular check-ups, and I got to know an oncologist in Seattle, and who told me I might be at risk for developing another type of cancer. She told me that she wanted to keep a close eye on me.
I turned 30 and had my first child. I was vacationing in Mexico and felt a lump on my breast, and I just knew. I went back to Seattle and got checked, and sure enough it was breast cancer. It was stage I, and they weren't sure if I should have a lumpectomy or mastectomy. Since I went through chemo [when I was 15], they were really cautious about what to put in my body. I had a lumpectomy along with chemo and radiation treatment. The tumor went away with the treatment and I was sent on my way.
In 2010, I had been continuing routine mammograms and getting MRIs every six months. They found more suspicious areas on my other breast and they found out it was DCIS (Ductal Carcinoma In Situ), and the only cure is a mastectomy, so I had one.
Not long after this, my doctors found that my abnormal check ups were the result of an early stage cervical cancer. I had a biopsy, continued to have irregular check-ups, and finally last year I went through a hysterectomy.
Since then, I have been healthy. I had reconstructive surgery a few months after my mastectomy, and I feel great. I feel really lucky that I live in a city that has such great medical resources.
What kept you going?
Primarily optimism. I have kids. Cancer was just something that I had to get through. I was confident that if I just stuck to my treatment, it would be just be another hurdle I'd be able to overcome.
When I went through my first round of breast cancer, I never missed a day of work, other than from my surgery. Keeping your life going and not letting the cancer take it over was very helpful for me.
I also have amazing friends and family who have been able to support me. There's an amazing support group for women with breast cancer called the Young Survival Coalition. I went back to church. All of that combined kept me going.
Why did you decide to get involved with Team SU2C?
When I decided to sign up for the marathon, I knew that I had to sign up for a charity, so I looked at all of the different options. I knew I wanted to fundraise for cancer research. SU2C was a name I recognized, but I hadn't yet participated in any fundraising. I went on to the website and did some research, and I liked what I saw. The research SU2C funded looked very innovative and were different from a lot of other cancer organizations I know about.
What made you decide to run a marathon for the first time?
My New Year's resolution this year was to run two half marathons. I ran a half earlier this year, and it was my third half marathon ever. I always said to myself there is no way I am ever going to run a full marathon. It was one of those things where I woke up one day and said I'm going to push myself. I thought, if I'm going to do a full marathon, I'm going to do it big. So I figured I may as well sign up for NYC.
Do you have any advice for someone going through cancer?
What worked for me may not work for everyone, but I think a lot of what you have to do to get through it is to dig deep. There's so much strength within everyone and you just have to find it in yourself. Lean on the people that care about you. If there's ever a time to seek support, that is the time.
Do the research. I am my best advocate, so I really encourage anyone going through any type of diagnosis to do your homework and get second opinions. It's your body and you know your body best.
Finally, just don't let cancer take things over, because it can and it will if you let it. It important to keep finding the good in life, stay optimistic and fight it.
Noriko will be running the NYC Marathon on November 4 for Team SU2C with the goal to raise $5,000.
To donate, visit Noriko's fundraising page at http://www.crowdrise.com/TeamSU2C-2012/fundraiser/norikokneip.
SU2C Celebrates Survivorship! 6 Ways to Honor the Survivor in Your Life
Posted on June 1, 2012 5:00 PM
Chances are, cancer has touched you in one way or another in your lifetime. Whether you are one of America's 12 million survivors or you know someone who has been diagnosed, we all know the challenges that cancer can bring and how much strength it takes to go through treatment.
On Sunday June 3rd, National Cancer Survivors Day, the world will unite to celebrate life beyond cancer. Here are a few SU2C approved ways to show the survivor in your life some extra love and support.
Pamper them. That's what Barbara Paget thought when she decided to create Cancer Survivor Beauty and Support Day now in its 9th year. Each year Barbara works with spas and salons nationwide to provide complementary treatments for cancer survivors on June 5th. "Cancer is expensive and I don't believe in making patients pay for anything. This event gives many people the opportunity to give back and brighten up someone's spirit without paying," says Paget. Nothing beats a little TLC to help relieve the stress and pain of cancer treatment. So why not treat the survivor in your life to something relaxing? Check out the Cancer Survivor Beauty and Support Day website to see if a salon near you is participating or plan a spa day of your own!
Motivate them to, "Keep Climbing!" Cancer survivor Sean Swarner is all about defying the odds and living life to its fullest. In his book, "Keep Climbing" Sean details his experiences with cancer, his adventures climbing all seven of the world's summits in celebration of his survivorship and his determination to change the way the world views a cancer diagnosis. With his organization, The Cancer Climber Association (CCA), Sean is continuing his goal to inspire and motivate those living with cancer through patient visits, mobile camps for kids with cancer, and adventure support grants. Give yourself or encourage a survivor to keep celebrating life by living every day to the fullest! The CCA helps inspire survivors to do this by leading an annual trip up Mount Kilimanjaro. They even offer a select group of survivors adventure support grants to help fund their climb. If actually climbing a mountain is not your thing, something as simple as sharing Sean's inspiring story might be the perfect way to celebrate.
Make them a star! Honor yourself or a survivor you love by launching a star in the SU2C Constellation. For as little as a dollar you can create a lasting star that commemorates and celebrates survivorship. Once you've launched your star, you have a place where friends and family can always leave their messages of support, tributes, and celebration.
Give them "Strings of Strength": Cancer survivor Shari Wolden decided that she wanted to create something to help both patients and charities. Her idea for "Strings of Strength" came from the Tibetan prayer beads she purchased while trekking in the Himalayas before her diagnosis. Hanging from frayed silk tassels on either side of the beads were two delicate silver charms, a bell and a Dorje. Research revealed that the Dorje was a symbol meaning "diamond thunderbolt" or "indestructible." Since many chronic health issues are associated with awareness colors, placing the Dorje on different colored cords to raise funds for medical research and patient support seemed natural. Shari even created a special necklace that benefits SU2C research!
Take a jog, ride a bike and get active in their honor. We all know that being active helps keep us healthy so why not be active in honor of yourself or a loved one diagnosed with cancer? Races happen year-round and often give back to cancer research, patients and those in need. Not sure how to get involved? Team SU2C is now recruiting members to walk, run, bike, or swim in honor of a loved one to benefit cancer research. SU2C also offers awesome K-Swiss racing gear and survivor shirts at the SU2C store.
Find a Survivors Day event in your community. On Sunday National Cancer Survivors Day activities will be held nationwide to bring survivors together to celebrate. These events will include parades, inspirational speakers, health fairs, races and art exhibits. To locate the one nearest you check with your local cancer treatment center or visit http://ncsd.org for more information.
On Sunday June 3rd 2012 SU2C will join millions and stand in support of Survivors everywhere on National Cancer Survivors Day. At Stand Up To Cancer we continue to support survivors by funding innovative cancer research. Here's to making everyone diagnosed with cancer a survivor one day soon!
*For more information on Cancer Climber Adventure Support Grants for 2012 email email@example.com.
State of the Fight: Skin Cancer
Posted on May 30, 2012 11:27 AM
Each month, in observance of the U.S. National Cancer Awareness Calendar, SU2C brings you The State of the Fight, a series of articles by those on the front lines of cancer treatment. We've asked our scientists to tease out myths from facts and report on breakthroughs in the field, as we all forge ahead in the fight to end this disease.
Kim Margolin, M.D., is a professor of medicine in the Division of Oncology at the University of Washington and a member of the Fred Hutchinson Cancer Research Center, Melanoma Research Alliance (MRA) Medical Advisory Panel and MRA Grant Review Committee.
Skin cancer is the world's most common cancer. Globally, between two to three million non-melanoma skin cancers and more than 132,000 cases of melanoma are diagnosed every year. In the United States alone, more than 76,000 cases of melanoma are diagnosed - one every eight minutes. Despite tremendous advances in medicine the melanoma death rate has remained static over the past 30 years, but the incidence is rising. This year alone, more than 9,000 Americans will die from the disease - one every hour.
These statistics are unsettling, but my hope and the hope of others in the cancer research community is that with new research and prevention methods we can change the odds and reduce the deaths from skin cancers.
Skin cancer is the uncontrolled growth of abnormal skin cells. There are three major types of skin cancer -- basal cell carcinoma (BCC), squamous cell carcinoma (SCC) and melanoma. BCC, the most common form of skin cancer, and SCC are easily treated with surgery when caught early, but can cause extensive damage to the surrounding tissue. These cancers, classified as non-melanomas, usually start in the basal cells or squamous cells found at the base of the outer layer of the skin. SCC occasionally proves fatal if it spreads to the lymph nodes or other organs; therefore, early detection remains important.
Melanoma, the most deadly form of skin cancer, develops from melanocytes. Melanocytes are cells that produce melanin, which is the pigment that gives your skin and hair their color. With early diagnosis and treatment, the chances of recovery are very good for patients with melanoma. If it is not found early, melanoma can grow deeper into the skin and quickly spread to other parts of the body. Once melanoma has spread beyond the skin, it is difficult to treat, and the median survival for Stage IV metastatic disease is less than one year. Melanoma represents just 4 percent of skin cancer diagnoses, but it is responsible for 80 percent of skin cancer deaths. A very rare type of cancer that arises in the skin and spreads quickly to other organs--Merkel cell carcinoma--occurs predominantly in immunosuppressed individuals and is not further addressed.
Surgery is currently the main therapy for all types of skin cancer. Different types of surgery may be needed, depending on the likelihood and pattern of the cancer and how much it has spread. Non-melanoma skin cancers generally stay localized and have a low chance of recurrence, so minor surgeries to remove the cancer are acceptable, and radiation therapy is generally reserved for cases where surgery would be impossible or disfiguring, such as certain parts of the face and in the case of large tumors. Melanoma, on the other hand, has high probability of both local and distant spread, so surgery often requires, whenever possible, a wide margin of uninvolved tissue around the tumor. In general, the prognosis of the very early stages of melanoma is somewhat less favorable than similar stages of non-melanoma, while in very advanced stages, both melanoma and non-melanoma can be lethal.
Unfortunately in the last 20 years, surgery success rates for skin cancer have changed little. Radiation therapy methods have improved a bit, but without major impact on outcomes, except for brain metastases of melanoma, which are more effectively controlled with stereotactic radiotherapy methods than with more traditional whole brain radiotherapy. However, the last year has seen major advances in treatment of advanced melanoma, in the form of two novel agents that work via very different mechanisms. Vemurafenib works against melanoma that has a BRAF mutation (about half of the melanomas arising in skin) and leads to remission in the majority of patients. However, these remissions tend to last only about half a year on the average and are often followed by rapid tumor growth when the drug is stopped. The other agent, Ipilimumab, is a form of immunomodulation that profoundly stimulates immune responses and may provide long-term disease control in about 20 percent of patients. The risk of using this agent is that some patients may suffer immune-related toxicities due to the nonspecific nature of the immune stimulation which leads to an attack on normal tissues.
Both of the approaches for advanced disease are being further studied with newer agents that may provide better remission statistics and/or less toxicity to patients. Additionally, methods to safely combine these approaches and others that would inhibit the molecules responsible for the spread and establishment of metastases are all under investigation.
As a physician, I have personally been involved in trials with the types of agents detailed above and others that may help increase the life expectancy of patients with advanced melanoma. One of my patients with widespread metastatic melanoma who did not respond to high-dose interleukin-2 and then to cytotoxic chemotherapy has had an excellent and very long-term remission using an investigational immunotherapy, PDL1 antibody, with very few side effects. This remission and excellent drug tolerance have allowed him to continue with a very high quality of life, which in his case means the parenting of teenage children, teaching Spanish fulltime in middle school, skiing and climbing mountains in Washington State on the weekends. Successes like these prove that we are making progress, but we still have much more work to do.
I was recently awarded a grant from the Melanoma Research Alliance (MRA), in partnership with Altor Biosciences and with the Cancer Immunotherapy Trials Network (of which I am one of the three principal investigators) to perform the first human clinical trial of a novel agent that has thus far shown a promising potential in animals. This molecule, known as ALT-803, combines an important cytokine (immune-modulating molecule that regulates immune responses) with its own receptor and with another portion of an antibody that further optimizes the body's handling of this novel molecule. It will first be tested in melanoma patients for safety and for its ability to stimulate immune cell numbers and responses to antigens. Our hope is that it will prove to be successful and alone or in combination with other therapy will lead to life-saving treatments for more patients suffering from this dreadful disease.
While some people are more susceptible to melanoma, everyone is at risk. Individuals who have fair skin, freckles, sunburn easily, have many moles, or have a family history of skin cancer have a higher risk for melanoma. Spending excessive amounts of time in the sun or living in sunny or high-altitude climates also increases your risk. No matter your skin type or geographic location, you should wear sunscreen and limit sun exposure to protect yourself from the sun's damaging rays. Exposure to damaging UV rays from the sun and tanning devices is the most preventable risk factor for all skin cancers, including melanoma. To protect yourself daily from the sun's rays: use broad-spectrum sunscreen (protects against UVA and UVB rays) with an SPF of at least 30 year-round, with frequent re-application, especially during sports (this is particularly important for children and for the whole family during all sunny-weather activities); wear sun protective clothing, hats, and sunglasses; seek shade; and avoid being out mid-day when the sun's rays are most intense.
Another key to catching skin cancer in its earliest stages is to pay attention to any changes in your skin by performing skin self-examinations. Persistent sores that do not heal or raised pearly-red patches may be signs of basal cell carcinoma and squamous cell carcinoma. Melanoma can often appear as an irregular, multi-colored or changing mole. When giving yourself a skin examination, you should look for the A-B-C-D-E's of melanoma. Moles or growths that are Asymmetrical, have an irregular Border, exhibit changes in Color, have a Diameter larger than the size of a pencil eraser (approximately 6 mm), or have Evolved in size or thickness . To identify the less concerning basal and squamous cell carcinomas, you should report to your doctor any pink spots that persist, recur in the same place over time, or are easily irritated. If you notice one or more of these signs, see your healthcare provider.
One of the best things you can do for yourself when it comes to skin cancer is to practice prevention, get educated, and establish a good relationship with your doctor. Taking advantage of free online resources available from the MRA, and the National Cancer Institute are great ways to stay informed on the most recent findings in skin cancer research and prevention. With this kind of knowledge, if you or a loved one receives a skin cancer diagnosis you will be armed with the tools to help you create a great medical team and treatment plan. We have so far to go in skin cancer research but we are making great efforts to find a cure for this, all to often, deadly disease.
Stand Up To Cancer has also partnered with the MRA to create a Melanoma Dream Team focused on using next-generation sequencing technology to examine both the normal and cancer genome of patients with metastatic melanoma. Patients whose melanoma tumors do not have BRAF alterations will have other specific genetic alterations identified and these changes will be matched to an appropriate therapy that directly targets those alterations. The hope is that this "personalized medicine" approach will lead to more effective and lasting treatments and potentially spare patients from unnecessary treatments that are expensive, highly toxic and all too often provide little or no benefit.
Continue reading "State of the Fight: Skin Cancer" »
A Conversation with Nancy Roach: The Importance of Cancer Advocacy
Posted on May 15, 2012 2:00 PM
Nancy Roach is the founder and Chair of the Board of Directors for Fight Colorectal Cancer. She also serves as a member of the SU2C Scientific Advisory Committee.
Cancer has been a part of my life for many years and continues to touch my life in many ways. On a personal note, I have lost my mom to pancreatic cancer, one beloved aunt to lung cancer, another to multiple myeloma and I have also lost many dear friends to colorectal and other cancers. I have an army of people in my heart who keep me moving forward. In 2001, after 20 years of normal pap smears, I was diagnosed with locally advanced cervical cancer. With my previous experience as an advocate, I was able to look at my own diagnosis from both a patient's perspective and the doctor's perspective to help navigate my treatment. I was humbled by my personal experience with cancer, and learned much about the reality of being a patient.
The job of a cancer advocate is to be the patient's "voice" at the table where decisions are made that impact the treatment of patients. After all, patients are the ultimate consumers of cancer research. Our voice needs to be heard at all points during the research process. Think about it like a car company - cars need to comply with all types of engineering and safety requirements - and they also need to be attractive to the people who buy the car. Car companies do a lot of research and testing to ensure that cars will fit the needs of consumers. The research process can benefit from engaging advocates in the same way.
A cancer advocate can help drive research, find solutions, and to help researchers understand the impact of cancer on real people. Advocates also remind Congress why research and access to care matters, and why funding critical programs makes a difference to their constituents. To help ensure that this happens, it is important that advocates also be able to listen, learn, and help communicate to the public what cancer researchers are trying to do. We are advocates because we have been touched by cancer. Researchers have worked for years - sometimes for decades - on their science. When we interact with researchers, we as advocates have a chance to learn about the science and the research process. We gain an understanding of their commitment and passion, and the challenges they face, especially now that Congress may cut research funding significantly.
I've been a patient, a caregiver, and a friend to people who would have benefitted from better screening or better treatments. Research is the path to making that happen. That keeps me passionate about research and moving research forward.
Looking back, I began my advocacy for colorectal cancer when my mother-in-law was diagnosed with rectal cancer in 1996. As I learned more I became frustrated by colorectal cancer's low profile, given how many people it kills each year. We have come a long way since then, but we still struggle with being a taboo cancer. Colorectal cancer is preventable, but it is still the 2nd leading cause of cancer deaths for men and women.
I started Fight Colorectal Cancer in 2006 to help give colorectal cancer survivors a voice. Currently, I serve as the Chair of our Board of Directors and spearhead our research efforts. As an organization, Fight Colorectal Cancer demands a cure for colon and rectal cancer. We work with survivors and their families across the country to educate and support patients. We empower our supporters to push for changes in policy that will increase and improve research, and to raise their voices against the status quo. Each year we host an annual Call-on Congress grassroots training and lobby day. We have trained hundreds of survivors and loved ones to stand up and be heard. In addition to advocating for federal funding, we support research directly through our Lisa Fund, working with American Association for Cancer Research to support research focused on finding a cure for colorectal cancer. Being able to provide private funding for research is an important part of our mission and an area that we hope to continue to grow. Fight Colorectal Cancer's goal is a cure - through universal screening that can prevent colorectal cancer or find it early when it's curable, and through successful treatments. I've seen progress in the last decade, but we still have a long way to go.
Through my work in advocacy I have also become involved with Stand Up To Cancer and currently serves as a member of the SU2C Scientific Advisory Committee. SU2C was started by advocates: a group of high profile, powerful women who had all been touched by cancer and were ready to change the way cancer research was being done. They partnered with the AACR, and required that their funded research teams involve patient advocates from the start. SU2C is changing the research process in exciting ways. I am proud to be a part of the team that selects the best in science to collaborate and move forward to benefit patients through their research.
Anyone touched by cancer has the ability to be an advocate for change. If you want big, systemic changes, find an organization that's working on your issues and get involved. If you want to support research, help raise money for an organization that funds peer-reviewed research. Shaping research in a hands-on way is more complicated, but I would start by contacting national organizations that support your passion and check out their programs. And if you're interested in colorectal cancer advocacy, drop me a line!
As an advocate, I have learned that I needed to become part of the process in order to influence the outcomes. Research and policy evolve through committee meetings, so I serve on many committees where research is defined, prioritized and evaluated. I am also working to decrease the bureaucracy of research - again, on committees. We want the research institutes and scientists to work together, not compete with each other. We want a promising preclinical finding to be translated into a clinical trial quickly and safely, not stay stuck because of lack of funding.
I think overall what is most powerful about a cancer advocate in any organization is their ability to provide a sense of urgency to cancer researchers, to Congress and to the public at large - patients are dying and we need research results now.
My Mother's Mother
Posted on May 11, 2012 11:59 AM
Written by Alison Sweeney, host of 'The Biggest Loser, author and SU2C Ambassador
I never had the chance to meet my mother's mother. My grandmother died of cancer when my mom was only twelve years old. And as a mother now myself, it makes me sad to think that my mom had to live her teenage years--arguably the most formative for a young girl--without her mother.
It's hard to believe that this was a time not long ago, when women didn't know about the importance of self-examination. This was a time when no one really even said the word cancer. People whispered it under their breath if they even uttered it at all. So I don't actually know a lot about my grandmother's cancer, except that it was in her lymph nodes and that it spread very rapidly.
I do know that losing her at such a young age had a profound effect on my mother. My mom realized early on how precious life is. Because of that, she always taught me to have an appreciation for life, to value the life we've been given, and to make the most of each and every opportunity, adventure, and challenge that comes along. In honor of her mother's too-short life, my mother is certainly making the most of her own.
I am so grateful that my mom is in my life today. I feel lucky every day that we get to spend together, sharing moments as a mother and daughter who have a very close relationship. The toughest year in our relationship came when my mom turned the same age her mother was when she passed away. I think my mom felt a heavy weight on her shoulders that year, and probably a deep fear, too. Only now, as an adult and a mom, can I begin to appreciate that fear--the fear that something like cancer might take you away from your family with little or no warning.
Cancer takes mothers away from far too many children. I have known several amazing women--mothers--who have bravely faced cancer. Two of my closest friends have heart-wrenching stories of loved ones battling cancer. Though some have lost their valiant fights, others have been fortunate to be able to beat cancer. I have been witness to incredible examples of survivors "paying it forward," survivors who graciously help in any way they can in the quest for a cure.
It's these survivors that inspire me to help join the fight against cancer. It's the mothers who have lost their lives to cancer that fuel my dream to help end cancer. We need to find a cure--for the sake of the victims and for the sake of their families. I may not know firsthand what my grandmother went through when she was diagnosed, but I know exactly how her loss has affected my mother. It is such a painful journey and I can only hope that my children, and my children's children, won't ever have to face the terrifying prospect of a life with cancer.
I have enthusiastically joined Stand Up To Cancer and I am proud to be part of an organization that is working so hard for a cure--a cure that will enable so many mothers (and so many others) to live long, healthy, happy lives. Launch a star in memory of someone you love at su2c.org.
Happy Mother's Day Mom, and all the mothers around the world.
SU2C Survivor Stories: Robert Gibson Stands Up
Posted on May 11, 2012 11:02 AM
Robert Gibson was diagnosed with stage four esophageal cancer in March of 2011. After receiving promising results from his participation in a clinical trial, Robert is now healing and recently organized a dirt biking event to raise funds for cancer research.
SU2C had the opportunity to speak with Robert to learn more about his personal cancer battle and The Tony Beir Memorial Man Ride event, which benefits SU2C and aims to encourage others to live life to its fullest.
How did you learn you had esophageal cancer?
The short version of the story is that I had been sick for over a year. My primary doctor had been chasing my symptoms trying to figure out what was wrong. At one point we thought I had a persistent ulcer. When the symptoms still didn't resolve themselves my doctor performed an endoscopy. That's when we discovered the tumor.
(Caption: Robert Gibson pictured left center, the day before his chemotherapy treatments began.)
At the time, what did you know about esophageal cancer?
I had heard of esophageal cancer before, but it wasn't something that I knew much about. At that point I had been more concerned about being diagnosed with colon or lung cancer. You hear more about those types of cancers. Esophageal cancer was the last thing I would have guessed I had. Finding out I had it was a real kick in the nuts.
How did you go about deciding what to do next?
I was told that I had stage four esophageal cancer. The first couple of doctors I saw regarding treatment told me that all they could do was make me comfortable, and that pissed me off.
I talked to a friend of mine who was a doctor about my diagnosis, and he helped me a lot. He told me that to try and beat my odds I needed to put together a team of doctors, and have a leadership mentality when it came to directing my course of treatment. He helped me put this group of doctors together, and told me that the quality of my care would be determined by how hard I pushed, and how much I wanted to fight.
What was going through treatment like for you?
My primary oncologist signed me up for a clinical trial. The trial had a fair share of potential risks, but since I hadn't found very many clinical trials for esophageal cancer patients, I thought I'd take a chance at anything that might help me live. I told my team from the start that I wanted to fight and they told me that it would hurt. I was a navy seal. I've done two combat tours and received two purple hearts. I'd been hurt before. But I didn't understand what they meant until I actually started my treatment. Going through it was painful on a level that is hard to describe.
I used to think people who died from cancer, just gave up, but I was wrong. The pain I went through during treatment was indescribable, and the amount of medication I was on made me barely functional. Looking back, it took me getting knocked down by cancer to really understand what courage is.
What kept you going?
Friends and family were a good support system. Other cancer patients really taught me a lot about what it meant to have courage. I used to think I was the walking definition of courage, but I didn't know what it really meant. I have met some truly courageous people, men and women, from all walks of life who refused to give up and allow cancer to dominate their lives.
While I was in my third round of chemo I met Erin, a 21-year-old woman who was diagnosed with late stage breast cancer when she was five months pregnant. She was faced with the heartbreaking decision to choose to save her own life or the life of her unborn child. She chose her child and never once did I see her complain about that decision. Instead she lived every moment of her life with happiness until the very end. That's courage, that's living a life to be proud of. Just seeing how she lived made me take a good look inside myself and realize that everyone has that kind of strength; you just have to embrace it.
What inspired the idea for the Tony Beir memorial "Man Ride?"
The ride itself started out as a joke ten years ago amongst my group of friends. We were all dirt bike racers and wanted to see if we could create the toughest ride possible. We jokingly called it, The Man Ride. We would wear outrageous outfits and ride 120 miles in 100-degree heat. It was tough.
Tony Beir was another person who really inspired me when I was going through treatment. Years ago we worked together and were really more of acquaintances than friends. He was diagnosed with cancer six months before I was. When Tony heard about my diagnosis he reached out to me and provided a tremendous amount of support. He reminded me that it was important to not just try to survive, but to really live each day to the best of my ability. We both loved riding and would encourage each other to get on our bikes when we could. Three weeks before Tony died we went on a bike ride. He never gave up on living and he taught me what it takes to remember to keep going. The medicine can only take you so far. You have to be the one to continue living your life.
This is the first year that we have done the ride as a benefit. We ended up having between 60 and 70 people show up for the event last month. Even with the high winds and rain, everyone was out there laughing and having a good time. It's not just a benefit about raising money for cancer research. It's also an event about celebrating and embracing life.
How did you decide to donate the funds from the event to SU2C?
I am a big San Diego Padres baseball fan. Last May a friend of mine took me to a game. I saw the SU2C logo in the park, and it struck me. It was right after my second round of chemo. I went home and started reading about the organization. I really liked that SU2C was not just about one type of cancer but about funding collaborative research that would be directed at patients and about finding a cure. It made so much sense. I told myself that if I was ever in a position to get involved and help raise money I would.
What is your prognosis today?
To be honest I'm not sure. The doctors I worked with had never encountered a case like mine. I had a 2% chance of survival when I was first diagnosed. After my surgery they told me that scans showed no evidence of cancer cells and that I seemed to be healing normally. The surgery and my treatment plan were very radical.
You use the word "SCAR" as an acronym for your experience with cancer. What does it mean?
It actually has several meanings. It's an acronym for: Strength, Courage and Resolve. Survive Cancer, and Ride. When you have cancer it's not just about surviving. You have to live. The people that I've met in my life that have had cancer are not the same afterwards, regardless of what kind of diagnosis they received. Cancer changes you.
How has cancer changed you?
For me, getting cancer was the best thing that's ever happened to me because internally it made me a better person. It sounds strange but I look at life differently now. My faith is stronger, my friendships are stronger, I'm healthier than I've been in the past five years, and little things don't stress me out anymore. There are pivotal moments in your life where you have to find your strength and courage to keep going. You get that by going out and living and doing it with passion. Being diagnosed with cancer clarified that for me.
What is the best piece of advice you could give to someone currently battling cancer?
Don't quit. Just because a doctor tells you that you are sick doesn't mean you should give up on life all together. You have to fight and go on living life the best way you can. What I learned from Tony and Erin is that we have no concept of the future. One day we will all die. With cancer it shouldn't be just about surviving. Take charge of your body, take charge of your life, make yourself happy, and fight like hell to keep living.