Category Archives: Pediatric Cancer

Five year cure, …really?

Five-year relative survival rates describe the percentage of patients with cancer that are alive five years after their disease is diagnosed. Use of 5-year survival statistics is more useful in aggressive cancers that have a shorter life expectancy following diagnosis (such as lung or pancreatic cancer) and less useful in cases with a long life expectancy such as prostate cancer.

When a patient achieves that magical 5 year survival mark, everyone celebrates the milestone and they are considered by most people to be “cured.” That is not necessarily accurate. What it means is exactly what it implies: They have survived five years since being diagnosed, nothing more. The average age at diagnosis of cancer is 6 for children and 66 for adults. While the chart at the right shows great progress in five year survival rates in childhood cancer from one period to another, it is only comparing five year survival rates, nothing more. While it gives some comfort that we appear to be making good progress, it does not really measure survival beyond a five year period. Using a standard five year survival rate for cancer will take an adult diagnosed with cancer up to age 71, but it only takes a child up to age 11. Has the child really “survived” and beaten cancer? Sadly, the answer for a large number of children is, “No.” We need a more accurate “survival” measurement for children. Kids cancer is not the same as adult cancer and survival for children must last much, much longer than just five years. As we do today, using a five year survival rate for childhood cancer grossly discounts the pitfalls that lay ahead for up to 95% of the survivors. When it is communicated in a way that others outside of the childhood cancer community can fully understand the long term impact cancer has on children, only then will we finally make childhood cancer a real priority. Let’s stop hiding from the reality of childhood cancer by using unrealistic five year “survival” rates. True progress in surviving childhood cancer can not be measured by only looking at the five year period from diagnoses. Today, advocates and medical professionals frequently cite 83% as being the average survival rate for children. In reality, the 30 year survival rate is only 65% overall. A long term survival rate such as this gives a much different and more realistic perspective to the general public who we rely on to help fund research. We’d love to see the American Cancer Society or even the National Cancer Institute to step up and address the need for looking at a more realistic method of measuring survival for children.

The following article was written by CJ Colton in February 2013. Her son is still fighting cancer today and it appears there is no end in sight. It highlights what a child goes through just to get to the five year “survival” point. Studies have proven that survivors of childhood cancer actually are fighting effects of their “life-saving” treatments for the remainder of their lives:

Read More … Five Years Is Not Enough

Brave seven-year-old girl shaves her head to support little sister after describing the day she was diagnosed with leukemia as ‘the worst day of my life’

A seven-year-old girl has shaved off all her beautiful red hair to show her support for young children suffering from cancer – including her little sister.

Hannah Gorsegner from Middletown, New Jersey, took the brave decision because she wanted to show her support for five-year-old sister, Natalie, who was diagnosed with acute lymphoblastic leukemia in August 2012 and is now in remission.

Hannah, who said the day her sister was diagnosed was ‘the worst day of her life’, announced her decision to shave her head during an appearance on the Today show last month.

‘I’m going to shave my head,’ she said. ‘This is one of the ways I can help kids with cancer and inspire them to be brave.’

The shaving took place last Wednesday during a Shave For A Cure event held by the Arms Wide Open Childhood Cancer Foundation at the New York Stock Exchange.

Sister Natalie even got to join in and at one point used the clippers to shave her giggling sister’s head.

After Hannah’s head was completely shaved, she had glitter poured on over freshly bald head while the entire floor of the stock exchange applauded.

She wasn’t the only person to have her head saved that day and the others included several little boys and several businessmen who were supporting the cause.

The event raised over $350,000 for childhood cancer, and Hannah donated her red hair to wigs for kids.

‘I hope that someone’s going to be wearing my hair and that they’re going to feel happy about it.’ she told Today.

Read More

Facing death, Lauren Hill teaches us life lessons

You are moved, momentarily. You shake your head and offer a quick prayer for Lauren or, more likely, for the blessing of your own kids’ good health. Then you can’t find your keys and soccer practice starts in 15 minutes and you have to stop at the cleaners and your car has no gas, and just like that the story of Lauren Hill retreats to the big warehouse in your head, joining the rest of the jumble. We are so well informed, yet so poorly versed.

You are who Lauren wants to speak with. It is to you she is dedicating the rest of her brief and precious life. Have a minute?

“One January night, I was having a meltdown,” she begins. “I asked God if I could do anything. I didn’t know what He sent me here for. I wanted to know what He sent me here for. Whatever you sent me here for, I’m ready to do.”

Does she have your attention now?

“What keeps me going is remembering why I’m here,” she says.

Lauren Hill is here for all of us. She’s a soul engine, and all she wants to do for the rest of her life is remind us how good we have it, and that we need to make that goodness matter, for everyone. That would include kids with the cancer she has, which is inoperable and incurable and swiftly fatal and receives very little attention.

To that end, she is doing all sorts of interviews, locally and nationally. Her cause has become a phenomenon, its apex occurring Nov. 2 when she plays in her first college basketball game. The game was moved from Nov. 15 at Hiram College to Xavier’s Cintas Center to accommodate a packed house and Lauren’s distilled timeline. The 10,000-seat arena sold out in less than a day.

Read More

Lymphoseek Approved for All Solid-Tumor Cancers

Approval of the Lymphoseek system for detecting sentinel lymph nodes has been extended to cover all solid-tumor cancers, its manufacturer said Wednesday.

The FDA is also permitting the radiolabeled tracer system to also now be used with or without lymphoscintigraphy, according to Navidea Biopharmaceuticals.

Previously, Lymphoseek had been approved in conjunction with melanomas, breast cancers, and head and neck tumors.

The product uses a technetium-99 labeled tracer to identify lymph nodes serving areas near primary tumors, allowing oncologists to select for excision and analysis those nodes most likely to harbor emigrating cancer cells. The tracer is called tilmanocept, and it binds to CD206 receptors in lymph nodes.

Navidea said the expanded approval was based on data collected in the company’s melanoma, breast cancer, and head-and-neck cancer trials. “An integrated analysis of data from all three studies showed positive diagnostic performance of Lymphoseek across the solid tumor types studied,” the firm said in announcing the new approval.

The FDA has requested a postmarketing study to be performed in pediatric cancer patients, to be completed by 2018, the firm added.

Source

Fighting Cancer By Fixing Our Cells’ Hard Drives

It’s pretty much standard practice in cancer research to search for genes that could serve as leads for new tumor-fighting drugs. But Cigall Kadoch, a 29-year-old assistant professor of pediatric oncology at the Dana-Farber Cancer Institute (yes, that means she’s already on the tenure track at Harvard) is following a new lead for anti-cancer medicines: exploring the genes that regulate the molecular structure of DNA itself.

Kadoch will be on stage at the Forbes Under 30 Summit on October 21, as part of a panel on the future of medicine, called Tomorrow’s Medicine Today.

A quick review of basic biochemistry: DNA is a molecular ladder in which a code made of molecules called bases (adenine, thymine, cytosine, and guanine or A, T, G, C) create recipes for all of the proteins that make up every part of the body, as well as instructions for when to make them.

But as with a computer’s hard drive, the code isn’t all that matters. The physical structure that reads the code and translates it for the body matter, too.

This DNA-reading structure, called chromatin, is constantly being modified as a way of determining what bits of DNA code get read. And the chromatin remodeling complex, which makes these modifications, is itself controlled by genes written into the DNA.

Kadoch, as a graduate student at Stanford, found that genes related to a chromatin remodeling complex called BAF, were, when mutated, the cause of a rare pediatric cancer: synovial sarcoma, usually found around major joints. Approximately 800 new cases occur in the U.S. each year.

Now, she has a 12-person team in her Boston lab looking for new drugs targeted at BAF, which might help not only kids with synovial sarcoma but also other patients. Kadoch guesses that 25% of cancers might be caused in part by BAF-related mutations. “It’s an amazing thing going from leading your own efforts to leading with a whole group behind you,” she says.

Original Article

Doctors Helping Kids Fight Cancer

Dr Andrew Pendleton makes his rounds. The Pediatric Cancer Specialist at Memorial Health says for these kids, its not just about the medicine, but their attitude.

“The most important thing is hope,” explains Dr Andrew Pendleton. “The 4 letter word hope. All the majority of patients will be cured depending on the type of cancer, but there is always reason for hope.”

Hope, and good medicine, is what helps keep a smile on these youngsters faces. No easy task considering what they are going through. But Pendleton says kids actually make better patients than adults.

“I think its easier for me to work with them because they are pure, they didn’t cause it, whatever we do will be beneficial,” said Dr Pendleton.

“Children do not complain about things,” said Dr Pendleton. “They never lived through life and know what normal life is. To them this is normal life, they adjust, they adapt, they thrive.”

“People ask me all the time how can you do this Doctor?” explains Pendleton. “How can you not do this? The patients, the children didn’t deserve anything they get. They go through life, not just the steps of life, eating breathing, going through the day. They live life, they play when they feel good they smile, they bring life to us, they bring a joy to us.”

Joy, and a cure. That’s what Dr Pendleton and everyone here want to bring to these families.

“Hope. All the reason to hope. No reason not to hope for a better future,” said Pendleton.

Despite the success rate and growing number of children with cancer, the national funding has been cut almost 30% in the past few years.

Read More…

Update: Atlanta Braves Craig Kimbrel’s Cleats Sell For A Whopping Amount!

A pair of gold Nike cleats that were worn by Atlanta Braves closer Craig Kimbrel were sold on eBay to support the nonprofit Curing Kids Cancer organization. Many professional athletes stepped up this year in support of children with cancer and this was Craig’s effort to mark September as National Childhood Cancer Awareness Month.

Craig is the chairman of the charity’s program Players Curing Kids Cancer and the color gold happens to be the symbolic color of childhood cancer. All proceeds from the auction went to cutting-edge kids cancer research.

The Braves closer wore the gold-colored cleats on September 3, 2014 against the Philadelphia Phillies where he picked up his 42 save of the 2014 season and his 181th of his career.

“They raise money for research for pediatric cancer,” Kimbrel said. “September is the month and the color is gold to raise awareness. I decided to put those cleats together and wear them in a game and try to raise awareness.”

“We are going to try to auction the cleats off and try to raise a little bit of money for the charity.”

Well, they did raise some money…the auction ended Wednesday night with the total selling price at $2,275.00

A great cause from a class act guy…thank you Craig for supporting and doing all you can for children with cancer.

Read More…

Video

Boston doctor in forefront of pediatric cancer research

Dr. Charles Roberts has a photograph of Mary Eisnor hanging in his office so he never forgets what he’s fighting for.

Mary, whose family lives in Bridgewater, died in 2010 at the age of 8 of hepatoblastoma, a form of liver cancer.

Roberts, an associate professor in the department of pediatrics at Harvard Medical School and in pediatric oncology at Dana-Farber Cancer Institute, attended Mary’s funeral.

“Every time we lose a patient to cancer it makes us want to go back and work that much harder,” Roberts said.

Roberts spends about 80 percent of his time running a research lab and 20 percent taking care of the kids who stand to benefit from that research.

But we are only just beginning to understand how the human body works at the genetic level, Roberts said.

“It’s an incredibly complex choreography,” he said.

Roberts compared cancer to typos in a book – only the stakes are much higher.

“The mistakes that happen in genes are causing kids to die,” Roberts said.

Roberts said childhood cancer research could absolutely benefit from more funding.

Pharmaceutical companies generally don’t focus on childhood cancer because there is not a large return on their investment, he said. That is due to the fact that – fortunately – childhood cancer is relatively rare, Roberts said.

Research companies also tend to be a little reticent to test drugs on children, so drugs tend to be tested on adults first, but the people developing treatment protocols for children are pediatric oncologists familiar with the unique needs of young patients, Roberts said.

Read More…

Local family sets out to raise $8 million for pediatric cancer research

The Symmes family knows what it’s like to lose a child to cancer. So in honor of being Pediatric Cancer Awareness Month, the family is putting on several fundraisers to help reach their goal of $8 million.

The Pink Label Event is one of their most successful fundraisers. Local boutiques donated brand new items to be sold at a reduced price. Others donated gently used items as well.

All the money raised will go toward the Caroline Symmes Endowment for Pediatric Research.

Caroline died when she was 5. She had a passion for fashion and loved the color pink. Her mom Libby says she will still fight for other kids.

“When you’re told by your daughter’s doctor that she’s going to die because they can’t do any research. They have no resources then that strikes you and you have got to help other families because we lost Caroline to a disease that should have been treatable,” said Libby Symmes.

Cancer is one of the leading killers of children in America. More than 20 percent of pediatric cancer victims do not survive. Riley Hospital for Children agree that research could benefit these children. They’ve teamed up with the Symmes family to help with funding for a research center through federal funds.

“Riley and the researchers and clinical physicians are able to take those dollars and broaden that for national research grants take that money and make it much larger in this effort,” said Jason Mueller of the Riley Children’s Foundation.

The Symmes family says they can’t reach their goal without corporate sponsorships. But in the meantime they’ll keep raising funds through unique ideas like the Pink Label Event.

Read More…

To learn more about the Caroline Symmes Endowment fund, click here.