Is This Realistic for the Average Person Diagnosed with Brain Cancer

This compilation of experts was compared to a tumor board meeting - I think that's a bit of a stretch considering that it included doctors from 6 different institutions. What I would't have given for my father to have had access to such a juggernaut of info. This was not the case my friends - far from it for the average american. We were able to eventually get treatment from Duke, unboubtedly a top-notch brain cancer spot. That was after a number of bad experiences locally. To have multi-institutional input from the jump may not have saved my father but I would imagine it would have eased our minds a bit in the early days of his diagnosis.

Excerpt From:

The story behind Kennedy's brain surgery
C.2008 NEW YORK TIMES NEWS SERVICE


What is known is that a few days after Kennedy learned he had a malignant brain tumor in the left parietal lobe, he invited a group of national experts to discuss his case.
The meeting on May 30 was extraordinary in at least two ways.

One was the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee — to summon noted consultants to learn about the latest therapy and research findings.

The second was his efficiency in quickly convening more than a dozen experts from at least six academic centers. Some flew to Boston. Others participated by telephone after receiving pertinent test results and other medical records.

Pittsburgh cancer center warns of cell phone risks

This cell phone thing is really starting to open people's eye's

Exerpt:

By JENNIFER C. YATES and SETH BORENSTEIN
The Associated Press
Wednesday, July 23, 2008; 9:11 PM

PITTSBURGH -- The head of a prominent cancer research institute issued an unprecedented warning to his faculty and staff Wednesday: Limit cell phone use because of the possible risk of cancer.

Ivy Foundation Gives TGen $3M to Launch Genetic Brain Cancer Initiative

[July 16, 2008]


By Turna Ray

With a $3 million grant to the Translational Genomics Research Institute, the Ben and Catherine Ivy Foundation has launched an investigation into the gene patterns that could help researchers develop targeted drugs and diagnostics for brain cancer and allow doctors to personalize treatment for the disease.
The Ivy Foundation, a Palo Alto, Calif-based foundation that funds brain tumor research, kicked off the Ivy Genomics-Based Medicine Project last week. The project brings together nine US institutions: TGen, Ohio State University, MD Anderson Cancer Center, University of Alabama at Birmingham, University of California-San Francisco, Henry Ford Hospital, Mayo Clinic-Rochester Minnesota, Case Western Reserve University School of Medicine, and Van Andel Research Institute.
Under the GPM Project, these nine institutions will try “to better understand how the genetic differences in individual brain tumors can potentially inform the prediction of what will be the most effective treatment option for each patient,” the Ivy Foundation said in a statement.
Researchers will categorize brain tumors by molecular profiling for the first time and analyze tumor response to various treatments.
With the grant, TGen’s lead brain tumor researcher, Michael Berens, will coordinate and manage the two-stage project, which is expected to take between four and five years.
“Investigators hope to discover patterns within the genomic profiles that can be used to indicate tumor vulnerability to selected treatments,” a spokesperson for the Ivy Foundation told Pharmacogenomics Reporter this week. “The genomic profiles may also be exploited for development of novel targeted therapeutics for GBM.”
The Project
In the initial phase of the GBM Project, slated to start immediately, researchers at the nine institutions will genetically profile tumor tissue collected from 40 patients and grown in mice, and treat the animals with 20 marketed cancer drugs.

"Because of the collaborative nature of the project, researchers will now be able to compare results across institutions on a diverse set of tumors and treatment regimen response patterns.”
“At the end of testing, researchers will generate a catalog of 40 GBM fingerprints and the corresponding responses to each drug tested,” the foundation spokesperson said. This first stage is expected to take between one-and-a-half to two years.
Upon the successful completion of animal studies, the researchers will then move on to human trials. The treatments for testing are still being determined, according to the foundation spokesperson.
The GBM Project will profile tumor samples, looking at DNA amplification or deletion with microarray-based comparative genomic hybridization, gene promoter methylation of various genes including MGMT, and select genes for sequencing.
Studies have identified promoter methylation of the DNA repair gene MGMT as a genetic marker for response to standard therapy.
"Because of the collaborative nature of the project, researchers will now be able to compare results across institutions on a diverse set of tumors and treatment regimen response patterns,” TGen’s Berens said in the statement. “The size, scope, and potential impact this project will have for patients with brain cancer is simply huge."
Critical Need
The GBM Project evolved from founder Catherine Ivy’s experience helping her husband, Ben, battle brain cancer. Her husband’s struggle with the disease revealed the limited therapeutic options available to her husband and to other patients.
Ben, who was president of the Palo Alto-based investment advisory firm Ivy Financial Enterprises, died of brain cancer in 2005.
In memory of her husband, Catherine formed the Ivy Foundation to develop better diagnostics and targeted treatments what will increase survival and improve the quality of life for patients with brain tumors.
Currently, all patients with malignant brain tumors receive the standard of care, which usually consists of surgery, radiation, and chemotherapy with temozolomide. The standard of care in brain cancer does not take into account the genetic profile of the patient.
The GBM Project is the first brain project funded by the foundation. “In the fall, we will announce additional research projects that will be funded by the Ivy Foundation,” the foundation spokesperson said.
This year, the organization plans to grant $12 million to patient-focused research in brain cancer.
The American Brain Tumor Association estimates that 44,865 new cases of brain tumors, including benign and malignant tumors, will be diagnosed in 2008. More than 100,000 cancer patients in the US will experience symptoms due to a brain tumor in the spinal cord from cancer metastases.

A new method to battle cancer

Tumor's amino acids train white blood cells to fight back



Clinical trial at UCLA

The DCVax clinical trial at UCLA's Jonsson Comprehensive Cancer Center remains open to patients who have glioblastoma brain cancer. For information, call 310-267-2621 or visit http://www.cancer.ucla.edu.

Lupe Carrillo, shown with his wife, Carmen, has been receiving personalized treatment to battle his brain cancer. A tumor was removed last summer.

Photo by Joseph A. Garcia

Lupe Carrillo, shown with his wife, Carmen, has been receiving personalized treatment to battle his brain cancer. A tumor was removed last summer.


Lupe Carrillo, front left, has had support from his wife, Carmen, and their three sons, in rear from left, Lupe Jr., Christopher and Adrian, while battling brain cancer.

Photo by Joseph A. Garcia

Lupe Carrillo, front left, has had support from his wife, Carmen, and their three sons, in rear from left, Lupe Jr., Christopher and Adrian, while battling brain cancer.


The brain tumor that threatened to kill Lupe Carrillo is now being used to help him survive.

The 61-year-old Oxnard man, diagnosed with a cancer that carries a 98 percent fatality rate, is being treated with an experimental vaccine made of his own white blood cells and amino acids from the tumor.

Like a search-and-rescue dog trained to follow a scent, the amino acids are used in a UCLA clinical trial to teach Carrillo's immune system to recognize and fight cells from his specific cancer.

Brain cancer, and poverty too

This is very disheartening and very realistic: An exerpt from the Chicago Tribune Online discussing the devastating financial and physical affects of Brain Cancer.


A Chicago man lost his job, home, insurance coverage after being diagnosed with glioblastoma. Now he pins hopes on free care.

By Judith Graham | Chicago Tribune reporter
July 13, 2008

Curtis King has lost almost everything since being diagnosed with a brain tumor.

His job. His income. His room in a South Side motel. His belongings—most of them thrown out on the street.

King, 45, has glioblastoma, the same cancer Sen. Edward Kennedy is confronting in Boston with a team of influential associates, friends and family at his side.

In Chicago, King has no one. He lives in a homeless shelter in a room with five strangers, alone with his fear. When he can, King follows what's happening with Kennedy on the Internet, trying to pick up bits and pieces of information that might help him save his life

A Little Blurb on Cancer Etiquette

I thought this was worthwhile as I've heard so many crazy things throughout my fathers cancer fight -


NEW YORK (CNN) -- A good friend of mine recently learned she has breast cancer. Even though I spend most of my time writing for a living, I was at a loss for the right words to comfort her.

Dr. Bernadine Healy, a brain tumor survivor, urges extra sensitivity in talking to cancer patients.

Click to view previous image
It wasn't until I interviewed Dr. Bernadine Healy, a brain cancer survivor, that I discovered there is such a thing as cancer etiquette.

"I found as a patient, sometimes people are awkward, and they'll say the strangest things to you," said Healy, former head of the National Institutes of Health and the American Red Cross.

She recounted in her book "Living Time" a conversation with a female acquaintance who declared, "You look great. It's amazing how good you can look when you're dying."

In another instance, Healy recalled a woman grabbing her hair and feeling the texture and asking, "Is that your hair, or is it a wig?"

Not surprisingly, Healy said, such remarks aren't good cancer etiquette.

Senator's wife gives upbeat update


July 07, 2008 12:36 EDT

BOSTON (AP) -- Ted Kennedy's wife says his cancer treatment has added a new word to her husband's vocabulary: "fatigue."

She says that's the only side effect he's been experiencing during treatment for brain cancer. The Massachusetts senator is midway through six weeks of radiation and chemotherapy.

In an e-mail to family and friends sent last week, Vicki Kennedy says her husband is coping well with the fatigue and tackling the disease with "his trademark grit and determination." She says after his morning treatments at Massachusetts General Hospital, Kennedy frequently goes sailing on his schooner "Mya."

The e-mail was obtained by The Associated Press from a Kennedy friend.

Vicki Kennedy says her husband describes his cancer as "a bear." But she calls him "a lion," adding that she's "betting on the lion."

Buzz Apparel - Support Brain Tumor Research

Fox Valley Brain Tumor Coalition - Journey of Hope Walk

The Journey of Hope is our major fundraiser of the year, allowing us to raise most of the funds that we need to survive. This event is critical to the success of this group, so we hope you can join us!

With over 750 walkers, the Fox Valley Brain Tumor Coalition puts on a great party the Saturday after Labor Day every year. The non-competitive walk is held on the grounds of NeuroSpine Center of Wisconsin. Our paved ½ mile trail is short enough for nearly everyone to make at least one lap around, and is accessible to wheelchairs! For those who like more of a challenge, we encourage as many laps as you are able to do!

The day is a celebration of those fighting brain tumors and remembering those who have lost their battle. The walk starts with a ceremony at the Tree of Hope, with testimonials from those most affected by this disease, as well as a dedication from neurosurgeon Thomas Wascher MD, one of our biggest supporters.

Once you have built up your appetite from the walk, come in to our party tent for a great home-cooked picnic. We have fresh roasted corn-on-the-cob, hamburgers, hot dogs, chips and sweets! Vegetarian selections are available for those with restricted diets.

A huge silent auction, kids games, music, pictures and more makes this party fun for everyone!

As always, dogs are welcome, but should always be on a leash…we will provide water for our four legged friends!

Your registration cost of $10 (yes still only $10 after all these years!!!) includes a great t-shirt with all of our corporate sponsors proudly displayed, lunch and all the fun you can handle!

New this year is our online registration and personal web page, making it easier for your family and friends to support your efforts.

My Team