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Friday, July 11, 2014

Accentuate the Positive: Eva Moon at the Joining FORCEs Conference

More than 700 individuals facing hereditary breast and ovarian cancer gathered at the Philadelphia Marriott for the 2014 Joining FORCEs Conference held by Facing Our Risk of Cancer Empowered in partnership with Penn Medicine’s Basser Research Center for BRCA.

As the Philadelphia Inquirer reports, performer Eva Moon spoke at the 2014 joining FORCEs Conference last month, integrating humor with the otherwise serious topic of hereditary cancer.

Hereditary breast and ovarian cancer is often caused by mutations in the BRCA1 and BRCA2 genes, which increase risk for breast, ovarian and other cancers.

Moon, who carries a BRCA1 mutation, uses humor as a method to cope with tough times. She performs a one-woman musical about her journey with hereditary breast and ovarian cancer.

At the conference, Moon shared her personal story, tips for finding humor in daily life, and engaged the audience with a number of songs and activities.

"I cried rivers of tears," she said. But she fought back and underwent a series of major preventative surgeries. Post-recovery, Moon harnesses humor for coping with hard times, and she is teaching others to do the same.

"Humor can relieve stress and speed healing," she said.


Artist and Survivor Jacob Riley-Wasserman Inspires Flip4Cancer.com to Benefit Abramson Cancer Center

Jacob Riley-Wasserman has an eye for the interesting and unusual.

After completing his studies in furniture design at the Rhode Island School of Design, Jacob planned to start a graduate program at New York University when he began having difficulty swallowing. He was only 22.

“I had an endoscopy at Penn Medicine that summer, and went back to New York to begin to prepare for grad school,” Jacob remembers. “It was just before I was to start school again that I learned I had esophageal cancer.”

Jacob returned to his home in New Jersey to receive proton therapy and chemotherapy at Penn Medicine.

It was at the Roberts Proton Therapy Center where Jacob became fascinated by the treatment process. “I was amazed that this beam of proton radiation was hitting my tumor without radiating to other areas of my body,” says Jacob.

As a designer and artist, Jacob was especially drawn to the compensator blocks used to direct the proton beam to the treatment area.

“Compensator blocks are custom made to fit the patient and their particular tumor,” says Jim Metz, MD, vice chair of radiation oncology at Penn. “Before proton therapy begins, the blocks are created based on scans of the patient’s anatomy and tumor site. Each time they come in for therapy, the compensator blocks are placed in the beam line to shape the distribution of protons over the target area while sparing exposure to normal tissue.”

Jacob was so fascinated with the compensator block, he asked to take his home. Then, he had another idea.

“I thought it would be a cool thing to start offering to patients,” says Jacob. “So we are beginning a program in which patients take their blocks home after a small donation is made to patient education at the Abramson Cancer Center.”

Today, Jacob’s tumor in his esophagus is gone, but he is still undergoing treatment at the Abramson Cancer Center.

While on leave from school, he is staying busy in his workshop.

His most successful design is the Star Spangled Spatula. Crafted of solid walnut and stainless steel, the over-sized grilling spatula has been highlighted in national publications like the New York Times, Martha Stewart Living, and Fast Company. Jacob licensed it with New York based firm, Areaware, and it has been sold across the country in home stores including Williams Sonoma, Bed, Bath & Beyond, and shops in some of the nation’s prominent museums. There’s also a smaller vinyl version for kitchen use.

With the spatula’s popularity, Jacob has decided to donate a portion of the percentage he receives from its sale to the Abramson Cancer Center.

“My cancer diagnosis has been a huge blow but I’ve been trying to keep as busy as possible,” he says. “I like to be working and make stuff. I work with my hands. This has been my opportunity to be on top of that. I don’t just have cancer, get treatment, and sit at home. I’ve been using this as an opportunity to create -  the perspective on that is interesting.”

To purchase a Star Spangled Spatula, or to learn more about Jacob, visit www.flip4cancer.com


Tuesday, July 8, 2014

Join the Peter Skelton Sarcoma Research Foundation's Annual Walk/Run/Cycle This Weekend!

Join friends and family of the Peter Skelton Sarcoma Research Foundation to raise funds and awareness of sarcoma.

Partial proceeds benefit the sarcoma programs at the Abramson Cancer Center at Pennsylvania Hospital.

Peter Skelton was a young man in his prime. He had a contagious laugh and a zest for life. On July 9, 2003, at the age of 36, doctors found a tumor. He had surgery in August, was diagnosed with soft tissue sarcoma, and was admitted to Johns Hopkins in late September. He passed away on November 2.

Pete’s valiant battle, from diagnosis to death, lasted a little less than four months. That was a very short time – four months – to comprehend that he had a malignant cancer, find a specialist for this relatively unknown disease, and just simply hope that some treatment existed to help.


The Peter Skelton Sarcoma Research Foundation was founded by Pete’s brother and sisters in memory of Peter. Their wish, as his would be, is to help others fight sarcoma cancer.

Peter Skelton Sarcoma Research Foundation Annual Sarcoma Walk/Run/Cycle


Date: Sunday, July 13, 2014, 7:30 – 11:30am
Location: RiverWinds in West Deptford, New Jersey
Times: Cycle: 7:30 am, Walk: 8:30 am, Run: 9 am

Benefits the Abramson Cancer Center's Joan Karnell Supportive Care Program at Pennsylvania Hospital

Register here, or contact Marylou  at 215-829-6466 or Carly 215-829-6737 for more information.

Monday, July 7, 2014

Cancer-free, and on the Road - Jim Finkel's Survival Story

Jim Finkel was never one to shy away from a challenge.

As a competitive cyclist in the 70s, he rode alongside some of the best cyclists in the world. Jim didn’t know it at the time, but his constant challenges to go faster, work harder, go longer distances, and fuel his body with proper nutrition got him in shape for the greatest challenge of his life – cancer.

“Towards the end of 2012 I was having trouble breathing, either on or off the bike,” says the 61-year-old mechanical engineer. “I was unable to clear my nostrils on the road, and when over-the-counter medications and antibiotics didn’t work, we knew it was time to take the next step toward a proper diagnosis.”

After scopes and scans revealed a tumor in his nasal cavity, Jim’s ear/nose/throat specialist in Delaware performed surgery. The hospital was not able to easily identify the tumor so the tissue samples were sent to the Mayo Clinic. The malignant tumor type was rare, as was the location of the tumor. Typing is important in deciding the treatment course and this tumor was resistant to chemotherapy.

Knowing the type of tumor, and the precision needed to make sure all "margins" were clear, Jim was referred to Penn Medicine’s Abramson Cancer Center by his own doctor, and father in law, who happened to be a retired physician.

“They assured me Dr. Bert O’Malley was the best out there, and the one who could take care of what needed to be done,” says Jim. “Because the tumor was rare, my case made it to the tumor board. This is not an honor you want!”

Jim needed more surgery to be sure the tumor had not spread, and radiation therapy was planned for after. But before his second surgery, he had some time to heal… and get back on the bike.

“My breathing was immediately better following the first surgery and I could not wait to get back on the bike,” he remembers. “While I was permitted to ride, I was told to ‘take it easy,’ which I did, sort of. I kept my maximum pulse to 90% and I turned down the watt rating also to 90%.”

“When it was warm enough to ride outside, I started to kick up my mileage, without pushing it. By the time the second surgery was to take place, I got in a nice 31-mile ride on Sunday, in advance of the Tuesday surgery,” Jim remembers. “The day after the surgery, Dr. O’Malley walked in, looked at me, and said, ‘You look great!’”

Jim’s second surgery was called “clean-up” and was intended to clear out any tissue that was seen as “PET active.” All of the tissue samples came back clean, so he was breathing easier on all fronts once again.

For six weeks after surgery, Jim received radiation therapy at Penn Medicine Valley Forge.

“The treatments were relatively smooth sailing, and the staff was great,” says Jim. “I am nearly bald, but I was told that I might suffer some hair loss, and my only question was ‘How would I know?’”

“Even though I’d started radiation therapy, I was back up to doing at least four hours a week of saddle time on a bike,” says Jim. “Keeping my weight up during treatment was a challenge, but cycling actually helped. Though my sense of taste was dulled, I was used to getting calories back into my body. I knew I had to eat and carefully match my calories taken in to my calories burned. I managed to hold weight throughout the process - eating a lot of Indian food!” Jim jokes.

Now, nearly two years after his journey with cancer started, Jim remains cancer-free and is still cycling like a champ.

In fact, he is joining the Abramson Cancer Center’s Ride to Conquer Cancer, a 2-day, nearly 150 mile bike ride that benefits cancer research at the Abramson Cancer Center.

“I can’t say enough about the Abramson Cancer Center,” says Jim. “My surgeon Dr. O’Malley, my oncologist, Dr. Chip Staddon at Penn Medicine at Radnor, and Dr. Geoffrey Geiger at both the Valley Forge and the Perelman Center for Advanced Medicine always put me as a person in front of me as a patient. Plus the staff at all locations have been phenomenal.”

Jim adds, “I want my story to give others hope.”

Learn more about, or join the Ride to Conquer Cancer here. 

Thursday, July 3, 2014

Penn's Basser Research Center for BRCA Presents at ASCO 2014

Early this summer, oncologists from around the world gathered to hear cutting-edge scientific presentations showcasing new findings in oncology at the American Society of Clinical Oncology. Investigators from Penn Medicine’s Basser Research Center for BRCA presented on a range of topics related to hereditary breast and ovarian cancer. 

Multiplex Testing

Katherine L. Nathanson, MD, presented on 'multiplex testing" for hereditary cancer risk. Historically, individuals with family histories of cancer were told about the individual genes that may be at the root the family’s history of cancer.

For example, a 40-year-old woman with breast cancer whose paternal grandmother also had the disease might be advised to consider BRCA1 and BRCA2 testing. Similarly, a 25-year-old woman with breast cancer might be offered testing for BRCA1 and BRCA2 but also a gene called TP53 associated with much younger breast cancers.

Now, in 2014, multiplex or “panel” testing allows a healthcare provider to offer individuals testing for genes which have a predisposition to cancer all at once. This commercially available test has brought opportunities and challenges to the world of cancer genetics for patients and providers alike. ASCO 2014 highlighted the divergent opinions on the new technology.

To learn more:

Breast Cancer Worry in Teens

Families with BRCA mutations or unrelated histories of breast cancer often wonder how this history can impact their girls as they grow into young adults.

Basser Investigator, Angela Bradbury, MD, has devoted her career to studying these issues and discusses her abstract on worry and behavior among teens at higher risk for breast cancer.

To learn more:

Side Effects of Risk-Reducing Salpingo Oophorectomy

For women who carry BRCA mutations, in is standard practice to discuss preventative removal of the ovaries and fallopian tubes between ages 35 to 40 or after child-bearing is complete.

These discussions inevitably lead to concerns about the potential impact of the procedure, which is called risk-reducing salpingo oophorectomy.

To learn more about Susan Domchek MD's research, you can read her interview with MedPage Today or see the Penn Medicine News Release.

For hereditary breast and ovarian cancer information, support, and research opportunities, visit Basser.org

Wednesday, July 2, 2014

Melanoma, Lymphoma and The Three Young Reasons I Support Cancer Research

Rob is riding in this fall's Philadelphia Ride to Conquer Cancer®, a 2-day, 150*-mile bike ride that benefits the Abramson Cancer Center. In 2006, Rob's wife, Edith, lost her battle with cancer leaving behind three young children. Just months later, Rob was diagnosed with melanoma. In this blog, he shares his story.

In 2005, I had it all – a beautiful wife, a high profile job on Wall Street, a wonderful home in the Philadelphia suburbs, and three adorable children. But our lives were about to dramatically change.

It was New Year’s Eve, and my wife complained of shortness of breath and started vomiting. At the emergency room, a scan revealed a large mass in her chest cutting off her main artery and crowding her lungs and stomach. Three days later she was diagnosed with PMBL lymphoma – a form of cancer that strikes women of child-bearing age. Six short months later, she had failed all therapies and we were in a desperate fight to delay the inevitable. When she died in early October, she left behind three small children – ages 4, 6 and 7 – and a huge hole in our lives.

Two months after her death I was diagnosed with stage 3 melanoma – a mole on my back that had been neglected while I cared for my wife. I remember telling my dermatologist “I can’t have cancer. My wife just died and I have three small children to care for.”

The standard of surgical care for the mole on my back involved removing an area the size of a salad plate. I returned to work two days later pretending that nothing had happened. Miraculously, I was able to keep up with my high stress job while holding things together as a single parent.

However, melanoma is terribly tenacious. In less than two years it was back. This time in my lymph system and the odds were not in my favor.

I must admit that I hesitated to get treatment. There was a high probability the surgery, which would remove 22 lymph nodes from my groin and left leg, would lead to lymphedema – a progressive, degenerative swelling of my leg. I had led a very active life and I had no desire to spend the rest of it disabled. I delayed the decision for almost two months. In the end, I decided to have both the surgery and follow-up chemotherapy in the hope of remaining healthy enough to care for my children. Post-surgery, the physical therapist told me it was unlikely that I would be able to ride a bike again. Cycling was my passion.

But here I am. I received my treatment at the Abramson Cancer Center under the supervision of Dr. Lynn Schuchter. Thankfully, due to their excellent care, I am NED (no evidence of disease). In an effort to help fight this disease, I have signed up for the Ride to Conquer Cancer, and am a member of Team Mission Melanoma. We plan to ride 150 miles this October 11 and 12 to help support cancer research at Abramson Cancer Center. Won’t you join us in supporting the fight against cancer?

Sign up to ride with us, or, make a donation to my team here.

My family and I thank you. Together we can find a cure.

The Ride to Conquer Cancer

Join Penn Medicine’s Abramson Cancer Center (ACC) on October 11 to 12, 2014 in the Philadelphia Ride to Conquer Cancer (RTCC)—an unforgettable and epic bike ride through Pennsylvania’s picturesque landscape -towards one life-changing destination: to cure cancer. The ride isn't just for cyclists, it's for anyone who wants to see a cure for cancer.

At two-days and 150+ miles, the RTCC will be a physical challenge—and an emotional and inspirational weekend—that will give you a chance to ride side by side with physicians, patients and families --raising serious funds and awareness in the ACC’s fight to cure cancer.

Before the ride, you will have access to:
  • Expert coaching
  • Training rides in your area
  • Personal web page for fundraising
  • Helpful manual
  • 2014 ride commemorative item
During the ride, participants will have access to:
  • Event-day ride jersey
  • Support along the route
  • Catered meals
  • Entertainment at camp
  • Massage and medical care
The funds raised through the ride will be put to use immediately, powering the ACC's vision to eradicate cancer as a cause of human disease and suffering through precision medicine, novel research, next-generation therapies, and compassionate care.

Join Today

This event will be remarkable, bringing together communities of cancer survivors, cyclists, and their supporters with a common goal to conquer this disease. Join the ride in October by registering today at www.ridetovictory.org or by calling (844) 777-7433.

*actual route distance may vary by up to 30 miles.

Tuesday, July 1, 2014

Penn's Amyloidosis Program Attend International Symposium and Report on Clinical Trials

Recently, several hundred investigators from around the globe gathered in Indianapolis, IN for the fourteenth International Symposium on Amyloidosis, April 27-May 1, 2014 to discuss the rare disease, recent findings, and ongoing clinical trials. Members of Penn Medicine's multidisciplinary Amyloidosis Program were in attendance and provide commentary on some highlights from the meeting.

Amyloidosis: A brief summary

Amyloidosis is a group of diseases characterized by the buildup of abnormal proteins called "amyloid fibrils" in tissues and organs throughout the body. Over time, this accumulation alters the ability for organs to function normally and leads to health complications. Left untreated, amyloidosis can be potentially life threatening, so receiving an early, accurate diagnosis is very important.

Diagnosing amyloidosis is not easy, however. Symptoms can be vague and are often similar to those of other diseases. In addition, symptoms can appear in several organs at the same time, spanning the areas of cardiology, nephrology and neurology, for example.

Often, the presence of many persistent, unrelated symptoms is what alerts a physician to the possibility of amyloidosis.

Penn Medicine's Contribution: Evolving Therapies 

The Amyloidosis Program at Penn Medicine is involved in the treatment and diagnosis of amyloidosis and the development of new drugs to treat the disease and its variants. Amyloidosis can have a variety of causes, and as a result, the Program brings together specialists from cardiology, nephrology, hematology-oncology, neurology, rheumatology, pulmonology and organ transplantation.

The following information is derived from presentations made at the fourteenth ISA, by members of the Penn Amyloidosis Program:

NEOD001 - A New Approach to Treating Cardiac Amyloidosis by Targeting Existing Organ Deposits

The Penn Amyloidosis Program is involved in the development of a promising new drug called NEOD001, which is designed to target and remove the buildup of amyloids in the heart and other affected organs. So far, the majority of patients in the study have seen stability or improvement in the blood tests that measure the impact of amyloidosis on the heart.

The primary investigator for the NEOD001 study at Penn Medicine, Brendan Weiss, MD, director of the Penn Amyloidosis Program, is enthusiastic about the preliminary results.

“The capacity to target existing amyloid fibrils in the tissues is among the great unmet needs of amyloidosis therapy,” Dr. Weiss says. “The safety information from this trial is reassuring, and while the organ response data are very preliminary, they are encouraging, and suggest further development of this approach is needed.”

Penn Researcher Investigating Kiacta™ for Treating AA Amyloidosis in International Study

A team of researchers, including Laura M. Dember, MD, of the Renal Electrolyte and Hypertension division at Penn Medicine, presented findings from an ongoing clinical trial of Kiacta™, an oral drug for the treatment of AA amyloidosis. A variant of the disease, AA amyloidosis is associated with kidney failure. This clinical trial looks to confirm findings from earlier trials around safety and effectiveness of Kiacta. 

Further Research Presented at the 14th ISA

In other developments at the fourteenth ISA, Adam Cohen, MD of the Amyloidosis Program at Penn commented on a study presented by Vaishali Sanchorawala from the Amyloidosis Center at Boston University. Dr. Sanchorawala’s study involves the use of drugs melphalan and bortezomib before and after stem cell transplant to treat patients with primary systemic amyloidosis.

Dr. Cohen observes that while the Boston University study confirms the activity of bortezomib in AL amyloidosis and its potential to further improve outcomes in patients undergoing autologous stem cell transplant, 14% of participants were unable to proceed to transplant, due to clinical deterioration during induction therapy.

“This suggests that going directly to transplant for transplant-eligible patients and reserving the bortezomib/dexamethasone until post-transplant may be a preferred approach,” Dr Cohen says, noting that further validation of these approaches in larger prospective trials is warranted.

For additional information on the program, including consultations, scheduling, and resources from Penn Medicine’s Amyloidosis Program, please contact the program by email, or call 800-789-PENN (7366).
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