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BY LINDSAY RAY | MAY 10, 2012
Yesterday, I came across a video making its way around the Internet. It made me smile (and made me a bit misty eyed). And because these kids, young adults, nurses and parents are better at sharing their message than I ever could be, check out their inspiring video below.
22-year-old leukemia patient Chris Rumble (he's in an orange shirt in the video) decided to use his film talents to make a music video of Kelly Clarkson's "Stronger" featuring his fellow patients, families and staff on the hematology/oncology floor at Seattle Children's Hospital. Rumble is an artist-in-residence- at Seattle Children's as part of LIVESTRONG's Community Impact Project.
What started as a project to cheer people up has now become a viral sensation. And Clarkson even tweeted about it saying, "Oh my goodness y'all have to see this! It's beautiful! I can't wait to visit these kids and nurses!" I agree with Kelly; it's definitely a beautiful video.
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BY LINDSAY RAY | MAY 7, 2012
Today is Melanoma Monday, designated by the American Academy of Dermatology (AAD) to raise awareness about melanoma and other skin cancers while encouraging early detection. Today also kicks off skin cancer awareness month.
Skin cancer is the most common cancer in the United States, with more than a million in nonmelanomas expected to be diagnosed this year and about 76,000 melanoma cases. Melanoma rates are also on the rise in the young adult population. A study published in the April issue of the Mayo Clinic Proceedings found an eight-fold increase in melanoma cases in young women and a four-fold increase in young men when comparing diagnoses in the 1970s to 2000s. The study analyzed data from the Rochester Epidemiology Project to examine first-time diagnoses from 1970-2009. And although diagnoses increased during that time period, overall survival improved. And a recent study in the Journal of Clinical Oncology found that women with early-stage melanoma have a 30 percent survival advantage compared with male patients. (Men are also known to have a higher lifetime risk for melanoma.) The researchers hypothesize that this advantage could be due to biological differences between the sexes but state that there must be further research into this discrepancy.
Due to the increasing rates of skin cancers among young people, several states have enacted some form of legislation to limit tanning bed usage (a known carcinogen) in this age group. Just last week, Vermont joined California in banning tanning bed usage in those under 18. While other states also have age limitations or require parental permission, these are the only two states to have a ban in place up to 18 years of age.
So how can you be more aware of skin cancer? Or if you have/had skin cancer, how can you share information with family and friends?
• The SPOT Skin Cancer campaign from the AAD offers tools and information for prevention and detection.
• ListentoYourSkin.org, which is sponsored by Leo Pharma, Inc., in association with the AAD, offers information on detection, the precancerous condition actinic keratosis and tools like finding the UV index in your area.
• The David Cornfield Melanoma Fund put together the viral video "Dear 16-year-old Me" to raise awareness and encourage prevention.
• More information skin-cancer specific nonprofits can be found in our toolbox.
• Read recent treatment information from CURE's "Melanoma: Ready for Takeoff" feature published last summer.
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BY LINDSAY RAY | APRIL 27, 2012
For decades, there hasn't been a new drug approved for sarcoma, but on April 26, the Food and Drug Administration approved Votrient (pazopanib) for patients with advanced soft tissue sarcoma who have received at least one prior chemotherapy treatment. However, the drug is not for patients who have adipocytic soft tissue sarcoma and gastrointestinal stromal tumors (GIST). Votrient was previously approved in 2009 for advanced renal cell carcinoma.
There are two main types of sarcomas--those that develop in the bones and those that develop in the soft tissues of the body, such as fats, muscles, nerves and more. Soft tissue sarcomas can occur anywhere in the body, but most develop in the arms or legs. While there are around 50 different subtypes, only about 11,000 cases are diagnosed each year, making this a rare tumor-type. Votrient is a tyrosine kinase inhibitor that works by inhibiting proteins that either help with the growth of new blood vessels that feeds these tumors or tell the tumor cells to grow and divide. It's a tablet taken once a day, without food, so either an hour before or two hours after a meal.
The drug was approved based on a phase 3 randomized, multicenter trial in which 369 patients were assigned to either receive Votrient or a placebo. Those in the Votrient arm had a median of 4.6 months progression free survival compared with the 1.6 months for those on placebo. Trending to improvement over the interim results announced at last year's meeting of the American Society of Clinical Oncology, median overall survival was still insignificant: 12.6 months for those on Votrient and 10.7 months for patients on placebo.
Common side effects included diarrhea, nausea, vomiting, decreased appetite and weight loss, hypertension, hair and skin changes, tumor pain, musculoskeletal pain, headache, shortness of breath, taste changes and fatigue, among others. Votrient also carries a boxed warning for the potential risk of liver damage, which can sometimes be fatal, so patients should be monitored for liver function. Other serious side effects include hemorrhage, gastrointestinal perforation, perforated lung and thrombotic events, such as a heart attack.
Other drugs in development for sarcomas include ridaforolimus, which was rejected by the same advisory panel that recommended Votrient for approval, ombrabulin, brivanib and Yondelis.
For more information, visit gsk.com call 888-825-5249.
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BY LINDSAY RAY | APRIL 16, 2012
What would you do if you had climbed Mt. Everest and reached the summit of six other peaks in Africa, Europe, Australia, Antarctica, North and South America? Well, if you're Sean Swarner, you'd run in the Boston marathon today. Sean, who is the first survivor to summit Everest, was twice diagnosed with cancer at ages 13 and 16 and given only 14 days to live after his second diagnosis. Instead, Sean went on to complete many athletic challenges, including the Iron Man challenge in Hawaii, and he cofounded a nonprofit organization called the Cancer Climber Association. And now he's added marathon runner to the list--despite the heat advisory this morning. Having finished the race, Sean tweeted, "2 weeks training, 8 weeks post-knee surgery, Boston marathon in 90 degree temps. Not too shabby. Lol Thanks CT Challenge for the opportunity."
To hear more about Sean in his own words, check out the video below:
Cancer survivor defies all odds: wtnh.com
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BY LINDSAY RAY | APRIL 1, 2012
Today was the last day of the OMG! Summit, and although I was tired (as were many others who got to enjoy the fun of Vegas), I was a little sad to see it end. But before the ending ceremonies, patients and survivors got another chance to open up to each other and share their hard-earned wisdom. Such nuggets of advice included, "coping with fear [of recurrence] is a muscle, but it gets stronger" and that sometimes patients need to learn how to be "care-receivers" just like the people in their lives learn how to be caregivers. And sometimes patients have to let the caregivers in their lives still fulfill the role in patients' lives they had before cancer--be it spouse, parent, sibling or friend.
And I know that I'm boiling down some of the complex issues that were talked about (and perhaps doing it much less eloquently than the speakers), but the beauty of a conference like this is everyone can carry the lessons they learned and the connections they made with them. And it doesn't really end here. Perhaps it's kind of perfect that OMG! ended at the beginning of the national young adult cancer awareness week. And this year marks the tenth anniversary of this special week (which is always the first week of April). So as one event in the young adult cancer movement ends, another begins, and the momentum keeps building.
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BY LINDSAY RAY | MARCH 31, 2012
Today I learned that around 72,000 young adults are diagnosed with cancer each year. That's around one young adult diagnosed every eight minutes. These are stats I didn't know before, and I imagine many of those outside the young adult cancer movement don't know either.
But what I found most fascinating is the progress the movement has made even in the last 20 years. Now, there's the LIVESTRONG Young Adult Alliance, the American Society of Clinical Ongology's "Focus under 40," many AYA-focused organizations springing up, growth of AYA-specific clinics (there are an estimated 18 in the U.S.), a new journal and society for AYA oncology and, most recently, the National Comprehensive Cancer Network released physician guidelines for adolescents and young adults.
Part of these great advances for the movement is an increased visibility, not only in the cancer sphere but also with the general public. Will Reiser, screenwriter of 50/50 and a young adult cancer survivor himself, spoke to the gathered patients, survivors, caregivers and advocates. He said that when they started production on the movie, they were worried that the irreverent humor in the film would offend people and cancer organizations might not like it. Instead, he's here in Vegas talking to hundreds of people who can relate to the experiences he put on the screen. He said he went through a lot of the issues he put on the screen in different ways and that because he was an expert on a topic that no one around him really was, he was able to uniquely share that, especially conveying young adult cancer patients isolation. And even though cancer is such a personal illness, he's been able to connect with several people who also had similar experiences.
And what's even more exciting is that everyone here is embracing the growing momentum of the movement. The theme of the conference is about sharing and learning from each other and looking forward so that future young adult cancer patients have a better experience--both medically and psychosocially. With the new NCCN guidelines for physicians out now, guidelines for patients will follow within the year, so young adult patients can know what questions to ask their physicians. I got the chance to talk with Brad Zebrack, PhD, himself a young adult cancer survivor and now a researcher into young adult cancer topics. As part of his next research project, he wants to ask young adult cancer survivors what would be the optimal system of care and what programs they would like to have in place. He wants to then take the voices of the survivors to the people in charge of making decisions--to add in a voice that's been missing.
It's interesting to see how young adult cancer advocacy has grown, but it's exciting to see how it's still growing and where advocacy is going. What aspect of the young adult cancer movement are you excited for?
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BY LINDSAY RAY | MARCH 30, 2012
I'm excited to be here in Las Vegas to cover the OMG! Summit for CURE. Not only is this my first time to cover a conference for the magazine, but it also cuts to the heart of why I got into journalism: meeting people and learning their stories.
Today, I got to meet young people still in treatment, people years out from treatment, old friends of CURE, lots of new faces and people I've only communicated with via email, like Emily who just wrote a guest blog for us. And everyone's excited to meet everyone else.
I got the pleasure of getting to talk to Christina. It's her first time attending the conference as well. She was diagnosed with ovarian cancer just after her 39th birthday and has been in treatment since. She said when she went to her local Gilda's Club and tried to meet people with a similar diagnosis, she found they were at a different stage at life. They wanted to see their grandchildren graduate while she just wanted to see her daughter through first grade. But she found people to connect with in I'm Too Young For This! Cancer Foundation and said that she feels like it's a "we" now.
And that's what's really great about this weekend--the feeling of camaraderie. I can't wait to meet more people and hear more stories.
Is there anything you want to know from the attendees?
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BY LINDSAY RAY | FEBRUARY 23, 2012
Are you a young adult dealing with cancer or its after–effects? Or are you a caregiver trying to help a young adult with cancer while also giving them the independence they crave?
These and many other issues are addressed in the YouTube video series, "Good Times and Bald Times," from Seattle Children's Hospital. The series features a circle of young adult survivors who tackle topics, such as nutrition, ports and picc lines and fertility issues. The conversations among the group are candid and emotional.
Sandwiched between adulthood and childhood, young adults can face a unique set of difficulties when faced with a cancer diagnosis. Thanks to the movie 50/50 and organizations, such as i'm too young for this! cancer foundation, Planet Cancer and First Descents, the young adult cancer movement is gaining recognition for having their own needs and voices.
At the end of March, I'll be traveling to Las Vegas to cover the OMG! Cancer Summit for Young Adults and bring back the latest on issues, including self image and how to manage a career after cancer. Let us know what issues you want us to cover or find at the Summit.
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BY LINDSAY RAY | FEBRUARY 8, 2012
Dating can be a daunting task. When you first meet someone, there is the awkward dance of getting to know one another. Adding in a cancer diagnosis can make the footing even trickier. Figuring out when and how to disclose your cancer information is a question many patients and survivors struggle with, and there's no one-size-fits-all answer.
There's also a certain amount of fear for both the patient/survivor and the person he or she is dating. A recent commenter on the blog "Would You Date a Cancer Survivor?" wrote:
I'm trying to decide whether or not to date someone with cancer. [...]I am a caregiver for two aging parents, one who has alzheimer's and three progressive, fatal and untreatable medical conditions. We have no other family member living on this continent to help with my parents and I'm not up to taking on being a caregiver for and losing a boyfriend as well. I know little about cancer and survival rates or what someone with cancer goes through during treatment so I really have no idea of what I'd be getting myself into where I to continue dating him. Any thoughts or advice would be appreciated.
To help patients and survivors navigate the dating scene, the Young Survival Coalition and Bright Pink are hosting a teleconference about romance and the issues that surround it, such as self image, confidence and intimacy, tonight at 8 p.m. ET. The speakers leading the discussion will be Jean Rowe, LCSW, OSW-C, and breast cancer survivor Jamie Pleva.
To RSVP, email your full name to RSVP@BeBRightPink.org
To find out more information, visit: brightpink.org/event-020812-teleconference.
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BY LINDSAY RAY | JANUARY 31, 2012
Skin Cancer
Ahead of its March 8 deadline, the Food and Drug Administration (FDA) approved Erivedge (vismodegib, GDC-0449) on Jan. 30 for patients with locally advanced basal cell carcinoma (BCC) that can't be treated with surgery or radiation or who have metastatic BCC, making Erivdege the first drug approved by the FDA for metastatic BCC. In another first, Erivedge is the first drug approved that works by inhibiting the Hedgehog pathway, which is involved in controlling cancer cell division and active in most BCCs. The drug is a pill taken once a day.
BCC, along with squamous cell carcinoma, is a non-melanoma skin cancer and one of the most common types of skin cancer, with an estimated 3.5 million cases diagnosed each year. Advanced BCC is rare, however, and disfiguring, which is why the drug fills an unmet need in this patient population. Last April, we covered some of the research about Erivedge (then known as GDC-0449) and even the first patient to try the drug, which you can read about here.
The approval in based on a multicenter trial with 96 patients. Of those with metastatic BCC, 30 percent had partial tumor shrinkage, and of those with locally advanced BCC, 43 percent had partial or complete tumor shrinkage.
Side effects include nausea, fatigue, hair loss, diarrhea, changes in taste and weight loss. Some serious side effects may occur, so a boxed warning will be included on the drug alerting physicians to potential risk of death or birth defects for an unborn baby. Doctors are required to verify pregnancy status before starting treatment.
A month's supply should cost $7,500, and Genentech (the drug's manufacturer) estimates a treatment course will last 10 months, totaling $75,000. The Patient Action Network Foundation has announced they will now offer co-payment assistance up to $7,500 per year for out-of-pocket expenses. To see the eligibility guidelines and for more information about the program, visit the Patient Action Network Foundation.
This drug should be available in one to two weeks, per the manufacturer.
For more information about Erivedge, visit www.erivedge.com.
Kidney Cancer
Just a few days before, on Jan. 27, the FDA also approved Inlyta (axitinib) for patients with advanced renal cell carcinoma (kidney cancer) who haven't responded to previous treatment.
Inlyta targets the vascular endothelial growth factor (VEGF) pathway, which is important to the development of new blood vessels in tumors, which helps tumors grow. The approval follows a 723-patient trial in which patients on Inlyta had a median progression-free survival of 6.7 months compared with the 4.7 months on the standard treatment, Nexavar (sorafenib).
Inlyta is a pill taken twice daily and is expected to cost around $8,900 per month. Side effects include diarrhea, fatigue, high blood pressure, decreased appetite and nausea. Because it can cause high blood pressure, individuals with this condition should have it controlled before taking Inlyta. Also, sometimes serious bleeding problems can occur, so patients with untreated brain tumors or gastrointestinal bleeding should not take Inlyta.
For more details, visit www.inlyta.com.
Non-Hodgkin Lymphoma
Finally, pixantrone was pulled from the FDA approval pipeline earlier this week. In 2010, the FDA rejected the drug, but Cell Therapeutics (its manufacturer) appealed and resubmitted the drug for approval as a treatment for non-Hodgkin lymphoma patients who no longer responded to other therapies. An FDA advisory meeting was set for Feb. 9, with a possible approval in April, but the manufacturer pulled the application to allow the company more time to prepare for the review. It plans to resubmit later this year.
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