Recently by Mary Brolley

Outside, a winter storm brings lashing winds and heavy rain to Houston. But in a surgical suite in MD Anderson's Main Building, Nicolas Salazar is waking up in a hushed room.

Coming out of anesthesia, he recognizes a kind face. David Ferson, M.D., professor in the Department of Anesthesiology and Perioperative Medicine, smiles and gently clasps his hand.

"You're doing very well, Nicolas," he says softly. "How do you feel?"

And with that, the most important member of the team for an awake craniotomy, in which the patient is conscious and talking for a portion of the surgery, has arrived.

'Mapping the brain' before removing the tumor
A 63-year-old insurance broker from Lima, Peru, Salazar is having his second brain surgery in as many months. Diagnosed late in 2011 with a central-brain glioblastoma, he underwent surgery in Lima in December. But the tumor was too difficult for the surgeons to remove, so Salazar and his family came to 
MD Anderson.

The lead neurosurgeon in Room 23 is Raymond Sawaya, M.D., professor and chair of the Department of Neurosurgery, assisted by fellow Lana Christiano, M.D. Before awakening the patient, they opened his skull to expose the brain.

Now they will "map" the brain, with Salazar's help.

Continue reading Brain Surgery: Patient Plays Crucial Role .

But not for him the easy lure of cereal and milk, pancakes or bacon and eggs.

"Most mornings, I sauté vegetables -- broccoli, cauliflower, Brussels sprouts. I look in the fridge and see what we have, and cook it up with seasonings," he says.

His three young children "love it," he adds. "It disappears in a second and, in fact, my children will not eat their eggs without veggies mixed in."

Cohen, Ph.D., professor in the departments of Behavioral Science and General Oncology, also directs MD Anderson's Integrative Medicine Program.

As his choice of breakfast foods implies, Cohen is an unabashed promoter of a healthy lifestyle. He meditates, practices yoga and carefully chooses what he eats and drinks, sticking to a mainly plant-based diet, whole grains and no sugar as much as possible.

Changed by year in Italy with grandmother
He started out a typical, meat-eating kid, then teenager. "I worked as an assistant butcher when I was in high school," he says.

He didn't get serious about watching what he ate until he went to live with his grandmother, Vanda Scaravelli, in Italy for a year when he was 24. She was a yoga master and a vegetarian. Cohen joined her in a daily yoga practice and gave up meat for the whole year.

The experience gave Cohen insight into how lifestyle changes can help people strengthen their defenses against cancer -- getting it, or having a recurrence.

Continue reading Advice on Avoiding Cancer or a Recurrence.

Florence Arya was on top of the world.

Newly retired from a rewarding career as a geologist, eager to travel with her husband and seemingly healthy, she was stunned when a well-woman exam in 2004 revealed she had a rare form of uterine cancer.

"I was in the best shape of my life, exercising 11-1/2 hours a week," she recalls. "Then suddenly, I'm dying. I have a death sentence."

Then 57, Arya was diagnosed with stage III uterine papillary serous carcinoma, an aggressive type that accounts for less than 15% of endometrial cancers.

Arya, who was postmenopausal, had experienced some vaginal bleeding, but hadn't been too concerned about it.

Her treatment consisted of a complete hysterectomy, five weeks of radiation and five sessions of chemotherapy.

Seven years later, Arya is immensely grateful for her recovery and quick to give credit where it's due.

Continue reading Uterine Cancer Strikes Suddenly.

Dara Insley is a pain warrior.

Treatment for breast cancer in 2009 and 2010 involved two extensive and delicate surgeries -- one a double mastectomy and another in her armpit and neck -- as well as chemotherapy and radiation therapy.

Although Insley is relieved and grateful to be free of cancer, she's dealt with chronic pain and discomfort since treatment ended last year.
 
Pain is considered chronic when it persists for longer than three months. Insley says her pain is varied and unpredictable.

"Sometimes, it's like a gripping vice around my whole arm. Other times, my shoulder feels like someone is clamping down on it. And sometimes it's actual sharp pins-and-needles pain in my arm or finger," she says.

She prefers to use nonmedical means of controlling her pain.

"Dark chocolate, music, exercise," she says. "Crying. Praying."

And her secret weapon.

"Cursing."

Continue reading Breast Cancer Patient: Pain Calls for Resourcefulness.

The 29th time Vincent "Dale" Sittig checked in to MD Anderson's P12 nursing unit for treatment in a Phase I clinical trial, his nurses hatched a scheme.

"We said, 'Next time will be 30 treatments,'" says Brandi Barosh, clinical nurse on the unit. "We should throw you a party."

"He said, 'Aww, you don't have to do that.'

"But we kept at him, asking what his favorite foods are," Barosh recalls. "Eventually, we got it out of him.

"He's a celebrity on our unit. Everybody knows and loves him," she explains. "We decided to go all out."

Like all the other patients on P12, Sittig, 51, has metastatic cancer.

The unit is "home base" for the Clinical Center for Targeted Therapy, which offers experimental Phase I therapies that may eventually represent advances in cancer research and treatment.

Diagnosed in 2006 with neuroendocrine carcinoma, Sittig travels to MD Anderson from Ville Platte, La., every 28 days for testing and treatment.

Continue reading Neuroendocrine Carcinoma Patient Inspires Fellow Patients, Staff .

"Remarkable" is an overused adjective.

But it fits each of the four keynote speakers at Anderson Network's Cancer Survivorship Conference Sept. 16-17 at the Omni Houston Hotel Westside.

Three were already on the path to success when cancer struck.

Dave Dravecky was a star pitcher for the San Francisco Giants when a desmoid tumor on his pitching arm ended his career.

Barbara Padilla was a talented young soprano hoping to be an opera star when she was diagnosed with Hodgkin's lymphoma.

And Hans Rueffert had just made it to the finals on the first season of "The Next Food Network Star" when a diagnosis of gastric cancer sidelined him.

The fourth, -- Sean Swarner, -- was just 13 when he was diagnosed with stage IV Hodgkin's lymphoma.
Three years later, he faced and beat another cancer -- Askin's sarcoma.

Swarner went on to become an elite athlete who competes in Ironman competitions and was the first cancer survivor to climb Mount Everest.

Continue reading Exceptional Resilience: Cancer Survivorship Conference Speakers Inspire .

If you suspect that cancer "runs in your family," you may be curious about -- or even considering -- genetic testing.

This testing, which involves having a blood sample taken, can reveal DNA mutations that have been identified as causing certain types of cancer.

For some, the tests provide crucial knowledge. Those who test positive for a known cancer-causing mutation can address the risks head on with increased vigilance and screenings.

But testing is not for everyone, says Banu Arun, M.D., professor in the Department of Breast Medical Oncology and co-director of the Clinical Cancer Genetics Program at MD Anderson.

"Most cancers are not hereditary," she says. "For example, only about 10% of breast cancers are inherited. The rest are "sporadic" -- that is, they occur because of a confluence of factors."

That's why Arun suggests that before deciding to be tested, you consult a genetic counselor.

Counselors help assess the chances that a person will develop a disease such as cancer. Often, the first step in the process is making a family tree, then looking for such "red flags" as having had many relatives who:

• contracted cancer before age 50
• contracted more than one primary cancer, or
• had the same or a related cancer (for example, breast and ovarian).

She recommends that women who've been diagnosed with breast cancer and suspect it's hereditary get tested before beginning treatment.

"The results might indicate the risk of contralateral breast cancer (second new primary in the opposite breast) and help with surgical decision making, for example, considering bilateral mastectomy," she says.

"Also, new targeted drugs are in development that specifically target hereditary (BRCA-related) breast cancer, and patients might be eligible for these studies."

Read more about genetic testing in the Winter issue of Network.

To those he meets, Reggie Bibbs has but one request. Just ask.

A Houston-based, internationally known activist, Bibbs has neurofibromatosis type 1 (NF 1), a genetic disorder that ranges in severity from almost imperceptible to major. 

As such disorders go, NF 1 is common, occurring in about 1 in 3,000 births. The two other forms of NF -- neurofibromatosis 2 and schwannomatosis -- are much more rare.

Bibbs' case is severe. The left side of his body is greatly affected, from tumors on his face to a distinct curvature in his leg.

He was diagnosed at the age of 8 months after his mother took him to Shriner's Hospital when she became concerned about a growth on his eye and another on the sole of his foot.

She discovered that she had a mild form of the disease, which she had unknowingly passed on to four of her five children. NF is an autosomal dominant genetic condition, meaning it may be inherited if just one parent has it.  

Two of Bibbs' sisters have mild forms, and his brother Ronald died at age 46 when one of his tumors developed into a malignant peripheral nerve sheath tumor.

About half the cases of NF occur spontaneously, though, says John Slopis, M.D., associate professor in the Department of Neuro-Oncology and medical director of the Neurofibromatosis Program at MD Anderson. (For more information on how the disease develops, see the link to the related story.)

For Bibbs, this early diagnosis began a lifetime of medical appointments and treatments for NF, which is chronic and debilitating. When he was 13, he "graduated" from Shriner's to MD Anderson.

Managing a range of physical and mental symptoms
Today, the Children's Cancer Hospital (CCH) at MD Anderson specializes in the care of children with neurofibromatosis, who may suffer from pediatric brain tumors, and peripheral nerve and spinal tumors.

Treatments include chemotherapy, surgery and radiation, or any combination of these. And because many pediatric patients experience learning disabilities, CCH has developed a special intervention program to assist these patients with educational support needs.

Because he's an adult, though, Bibbs receives treatment at the Neurofibromatosis Clinic, which didn't exist when he first came to the institution. It's one of the few clinics in the nation dedicated to the long-term care of NF patients. They are subject to headaches, epilepsy, spinal deformities and cardiovascular problems in addition to tumors.

Bibbs has had many surgeries and has participated in clinical trials. He sees the staff of the NF clinic at least twice a year for screenings. They watch him carefully for disease progression or worsening of symptoms and to make sure his tumors aren't becoming malignant.

Because of his facial disfigurement, for many years he went out rarely, and only to places he felt safe. Though sometimes mocked, shunned or treated cruelly as a child, he recalls that his siblings and others in the neighborhood protected him.

'Their strength helps me'
Whether you encounter Bibbs out in public, through his Neurofibromatosis Café website, or in a documentary, it's obvious that he's energetic, committed and happy.

He credits his friend Lou Congelio, a veteran Houston advertising executive, with helping him create an identity for "Just Ask," complete with a logo featuring a line drawing of Reggie's face. The site sells "Just Ask" T-shirts to raise awareness, and hundreds of fans and friends -- including celebrities -- have sent in photos of themselves wearing the shirts.

His supporters have encouraged him to make more public appearances, such as a trip to Minute Maid Park to see a Houston Astros game. He's been heartened by the warm welcomes he's received.

"I feel terrific about going out," Bibbs says. "People are excited to see me because they've seen me before." He feels he's found his calling in drawing attention and raising funds for research into this often-devastating disease, which strikes men and women of all races and backgrounds.

Because he is so tied into the NF community around the world -- not just NF patients, but those whose research and practice focus on the disease -- Bibbs is hopeful about the future for those with NF.

"I often wondered why I was born with NF," he says. "But if I didn't have it, there would still be others with it. Their strength helps me. I count it a blessing to know them. "I just don't know what else I'd be doing."

Related story:
Q&A: Neurofibromatosis and Its Relationship to Cancer
Neurofibromatosis is common, yet baffling, occurring in about one in 2,500 live births, but with symptoms that vary from minimal to profound and debilitating Dr. Slopis answers frequently asked questions.

Neurofibromatosis is worthy of study, say cancer and genetic experts, because the DNA mutations that cause its three types may yield crucial information about how cancer develops -- and new approaches to cancer treatment.

John Slopis, M.D., associate professor in the Department of Neuro-Oncology and medical director of the MD Anderson's Neurofibromatosis Program, explains the basics of the disease. (See related story on NF patient Reggie Bibbs.)

What is neurofibromatosis?
Neurofibromatosis is a name given to three different genetic conditions: neurofibromatosis 1, neurofibromatosis 2 and multiple schwannomatosis. These conditions are all called neurofibromatosis or NF because they all cause tumors to grow on nerves.

What is neurofibromatosis 1?
Neurofibromatosis type 1 involves tumors of the nerves from the spine to any extremity and including the skin, tumors of nerves in some organs and tumors of the optic nerves (from the eyes to the brain). NF 1 is also associated with other complications, including bone tumors, spinal scoliosis, high blood pressure, short stature (limited growth in children), brain tumors and learning disabilities.

The genetic mutation is found on chromosome 17 and is inherited from either the mother or the father. In half of the cases, the person with NF 1 will be the first born in the family, who can then pass the gene for NF 1 on to his or her children. People with NF 1 have a great variety of different symptom patterns.

What about NF 2?
Neurofibromatosis type 2 is also genetic, passed down in the same pattern as NF 1, but the genetic mutation is on a different chromosome -- chromosome 22. The disorder is quite different from NF 1.

In NF 2, tumors grow on any nerve from the spine or brainstem. The disorder is diagnosed clinically by loss of hearing or dizziness in the patient due to growth of tumors on the acoustic nerves (these are called 8th nerve schwannomas).

Tumors can grow on other structures in the spinal cord (ependymomas) or on the bone of the skull (meningiomas). Tumors of the spine can be very serious. Most people with NF 2 have very similar patterns of problems. NF 2 does not cause the other complications seen in NF 1.

And the third type of neurofibromatosis?
Called multiple schwannomatosis, it looks a lot like NF 2. But these tumors of the nerves never occur in the brain, brain stem or anywhere above the neck. We know there is one gene mutation that causes it in about a third of cases. This gene mutation is called INI-1. It was only recently discovered. The other two-thirds of cases must be caused by gene mutations, but we have not yet identified these. This condition is best known because it causes patients to experience a great deal of nerve-related pain.

What is the connection with cancer or cancer treatment? 
Most of the tumors of NF are benign tumors that grow slowly and do not become malignant. This means that these tumors are a lot like normal tissue. However, when they grow in the wrong place, the mass of the tumor causes problems. These can cause pressure on the nerves to the ear or eye, spinal cord, brain stem or brain. Sometime the tumors cause pain. Only NF 1 tumors are known to transform into serious malignant cancers called malignant peripheral nerve sheath tumors.

The connection with cancer is that many cancers result from mutations of normal DNA. If we can work out the way a mutation changes the growth of a normal tissue into a tumor or cancer, we can find clues to help cure the cancer.

What types of research are you conducting in the Neurofibromatosis Clinic at MD Anderson?
We're evaluating the use of positive emission tomography/computed tomography imaging (PT/CT), both of which provide three-dimensional images of functional processes in the body, to identify tumors in the early stages of malignant transformation.

We're working on whole-gene sequencing of the NF 1 gene to identify specific mutations that predict the development of malignancy in a given patient with NF.

And we're attempting to characterize the tumor genetics and signaling mechanisms of NF1 and NF 2. We hope to discover more targeted systemic therapies, which home in on the condition's distinct biological pathways.

Related story:
Go Ahead Ask: Neurofibromatosis Patient Invites Questions, Makes Friends
A Houston-based, internationally known activist, Reggie Bibbs has neurofibromatosis type 1, a genetic disorder that ranges in severity from almost imperceptible to major.Read more about Reggie

Learning you have cancer is scary and confusing enough.

Thinking about how you'll manage to keep your job during cancer treatment adds another layer of worry and stress.

A three-part series in Network, MD Anderson's newsletter for patients, survivors and caregivers, is exploring ways to cope with your job after a cancer diagnosis.

From deciding whom to tell (or whether to disclose your diagnosis at all) to making a plan to deal with job responsibilities, to knowing your legal rights, the series aims to be relevant and meaningful.

The first article, in Network's summer issue, featured cervical cancer survivor Marisa Ramirez, who found her job a refuge in a time of uncertainty.

"I really didn't know who I was going to be as a cancer patient. But I knew how to go to work Monday through Friday, doing media relations for Interfaith Ministries," she recalls.

"I put my back up against that, and it helped me be more positive."

Ramirez says her coworkers offered prayers and support, but "followed my lead" when it came to dealing with her illness.

"I sensed that if I felt it was too much to handle, they would, too."

How did you deal with working through cancer treatment? Any tips for those newly diagnosed and facing this issue? Tell your story in the "Comments" link at the top of the article.

Read the Full Article in Network Newsletter

One afternoon last February, Miguel Gonzalez, an executive assistant in the Communications Office, handed me a slip of paper containing Adelea Ibsen's name and phone number.

"She wants to tell her story," he said.

I called her the next morning, and though she was in the middle of something, the 32-year-old mother of two charmed me over the next 20 minutes with her honesty, wit, intelligence and laughter.

We arranged to meet the next time she was at MD Anderson for treatment.

We had a marvelous conversation a few days later. She was even lovelier in person. With sparkling blue eyes, short, stylish hair, wearing a simple but beautiful sundress, she had a smile that lit up the waiting room.

She obviously adored her husband Kent, whom I met briefly, and her young daughters Pia and Nella, back in Austin, Texas, with her mother.

She told me of her diagnosis with stage IV breast cancer in August of 2008. The family was living in Germany when Adelea, nursing Nella, noticed a change in her breast. Immediately after the shocking diagnosis, the family moved back to Texas so she could be treated at
MD Anderson.

To share her experiences as a young cancer patient, Adelea offered to contribute posts to Cancerwise. She became one of our first patient bloggers, and her honesty, humor and authenticity made her a favorite with readers. One of her posts concerned the fact that the clinical trial she'd been on had failed. With typical honesty and humanity, she recounted the anger and sorrow she felt after learning that yet another trial had been unable to stop the progression of her cancer.

She concluded with: "So we start again with a new trial. This time, we will attempt again the emotional tightrope of having immense hope but no expectations."

Though her health declined in the past two months, it never dampened her sense of humor or resilience. A Facebook post at the end of August mentioned that she'd been "hit on" in a drugstore by a guy "who digs bald chicks. "

"I've still got it," she added wryly.

The lovely and luminous Adelea died last Monday.  

We are humbled by the generous impulse that spurred her to share aspects of her story with Cancerwise readers.

A colleague who also met her said this morning, "Who wants to die in fear? Adelea went with hope. To the last, she went with hope."

Contributions in memory of Adelea Ibsen may be made to her daughters' school, St. George's Episcopal School, 4301 IH-35, Austin, Texas, 78722.

Read posts by Adela Ibsen
Mondays are for Chemo Tuesdays are for Sleep
My Trial Failed
Talking Poop