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February 2011 Archives

Your family's history of past events and life experiences is invaluable. Family medical history is no different.

Cancer in my family medical history includes the loss of a brother to non-Hodgkin's lymphoma at the age of 37, and a cousin who is living through it, thanks to advances in medicine over the years. My mother died of melanoma.

My sons' history includes renal cancer, because it claimed the life of their father, featured in Caregiver Chronicles.

judy cancer check.jpgEasy to Do
So, with that in mind, taking MD Anderson's Cancer Risk Check was a simple process. Is there a history of breast or colon cancer? How many fruits and vegetables do I eat daily? Do I smoke? Do I drink? How many drinks per day? How much do I exercise?

Based on my responses, I got personalized recommendations, which suggest changes I should consider making in my daily life.

It's My Choice to Take Action
Because my mother died of melanoma, my check list profile suggests I make frequent visits to a dermatologist. Thankfully, I've already worked in bi-annual visits with Carol Drucker, M.D., an associate professor in the Department of Dermatology at MD Anderson. Exercise already is part of my lifestyle, too. Eating more fruits and vegetables daily is something I need to work on.

Now It's Your Turn
Since you now know the Cancer Risk Check is simple, will you take it?

Therese Bevers, M.D., medical director of the Cancer Prevention Center and Prevention Outreach Programs, recently was quoted in MD Anderson's 2009-2010 Annual Report saying, "We created Cancer Risk Check to be simple to use and to empower people to take actions for a more healthful lifestyle."

And she adds, "Our goal is to have screening guidelines that are a resource. It's what we're doing to keep people from dying of cancer."

So, no doubt you'll take the Cancer Risk Check, especially if you're like me and you only have the memory of the smile, voice or touch of your brother, mother or spouse.


Take the Cancer Risk Check


Kendra Woods, Ph.D., is not your typical researcher. She refers to herself as a researcher/educator, unable to separate the two labels and perceiving one as vital to the other. Her personal goal throughout her career has been to contribute to the education of those who work to understand and better treat cancer.

It should come as no surprise to discover Woods has championed the development of the recently launched MD Anderson Professional Oncology Education classes, available to anyone with a computer and an Internet browser.

MD Anderson and Woods recognized by providing enduring foundational training to international partners, future fellows and trainees, and anyone else interested in better understanding cancer care prior to physically visiting MD Anderson, each subsequent interaction would be more productive. Not to mention, MD Anderson faculty could provide the same information to a multitude of audiences without ever having to make travel arrangements.

Watching the high-quality films will be important preparation for observers and visitors to MD Anderson, who will arrive with a core of information, thereby enhancing every minute spent on the Houston campus.

The first step in developing the courses was to figure out what defined foundational. 

What did health care professionals need and want to know that would underlie both clinical and research focused professionals? To answer this question, Woods and others at MD Anderson surveyed hundreds of researchers regarding possible topics. 


The MD Anderson group concluded the areas with the broadest appeal that would provide the greatest foundational information were:

  • Introduction to Clinical Oncology
  • Survivorship
  • Breast Cancer
  • Inflammatory Breast Cancer
  • Cancer Pathology
  • Cancer Biology

The Survivorship I course, Breast Cancer course and Inflammatory Breast Cancer course are all available online. Upcoming courses include Survivorship II and Introduction to Clinical Oncology, with the remaining categories to follow over the next year.

Another ideal group of lectures, according to Woods, would be the "Core Curriculum" Lecture Series given to incoming fellows in many departments. Woods' hope for the educational future of MD Anderson is that these courses will become part of a broader, integrated effort to disseminate cancer care information to a larger portion of oncology professionals across the globe.

She envisions the training leading to second tier education in the form of:

  • streaming media
  • webinars
  • off-site conferences
  • Internet case studies
  • onsite conferences
  • textbooks
  • collaborative user groups

"I really see this as educating the next generation of educators and researchers," Woods says. "Sharing this information does not decrease our influence, but increases our ability to further MD Anderson's mission of eradicating cancer. This will accelerate everyone's rate of discovery."


By Erin Horne, Cord Blood Bank Program, MD Anderson Cancer Center

Every day as new babies are born, staff members at the MD Anderson Cord Blood Bank hit the road and get busy collecting cord blood donations to add to our nation's stem cell registry, the National Marrow Donor Program. This registry links physicians, patients and donors to find suitable matches, making stem cell transplants possible. 

cbb.jpgA stem cell transplant is one option for patients affected by leukemia, lymphoma and other life-threatening cancers and blood diseases. In recent years, cord blood has become a growing source of these stem cells, as physicians have come to realize how rich this blood is in new blood-forming cells.  

Cord blood donation is also becoming a more popular option among mothers and families, as they begin to better understand its importance in the treatment of these diseases. The fact is, if it's not banked and stored for future use, the placenta and cord blood are discarded after birth. Why not take advantage of this great opportunity instead of allowing it to be wasted?

Cord blood collection is quick, simple, painless and causes no harm to the mother or new baby. When donated to a public bank, like MD Anderson's Cord Blood Bank, it's free and it gives transplant patients an even greater chance of being paired with a suitable match.

Your new baby holds the possibility of extending the life of another person and bringing new hope to another family.

If you or a loved one is expecting and interested in donating your child's cord blood, contact the Cord Blood Bank office at 866-869-5111 or 713-563-8000 or by e-mail at cordbloodbank@mdanderson.org.



MD Anderson researchers followed a surprising clue to discover that a known cancer-fighting protein also limits the growth of cells damaged by reactive oxygen species, one type of the highly reactive molecules known as free radicals.

Their groundbreaking paper in the Proceedings of the National Academy of the Sciences won the Cozzarelli Prize Tuesday as the best paper in the Biological Sciences category published in the Proceedings during 2010. The prizes are given to the top paper in six categories out of more than 3,700 studies published by the journal each year.

blog pic.jpgCheryl Walker's research team was studying one tumor-suppressing protein when they found another protective protein known to work inside the cell nucleus moonlighting in another part of the cell.

Following up on this surprise, they found the cancer-blocking nuclear protein ATM has a second job controlling and killing damaged cells out in the area between the nucleus and the cell membrane called the cytoplasm. ATM recognizes damage caused by reactive oxygen species and tells the injured cells to stop growing or orders them to devour themselves, a process called autophagy.  

Elevated ROS has been linked to more than 150 diseases, including diabetes, cancer, neurodegenerative diseases and atherosclerosis. ATM is commonly mutated in cancer.

Previously, ATM was known to monitor DNA damage in the nucleus, halt cell division and order the cell to repair the damage. If repair fails, ATM sets off apoptosis -- programmed cell death.

"The Cozzarelli Prize is wonderful recognition of research that brought to light a brand new aspect of cell biology and marked a new direction for our lab," says Walker, a Ph.D. and professor in the Department of Molecular Carcinogenesis, located at MD Anderson's Virginia Harris Cockrell Cancer Research Center, Science Park, near Smithville, Texas.

"Discovery of ATM's additional anti-tumor role is the type of basic science research that heightens our understanding of cancer and paves the way for improved prevention and treatment," says Raymond DuBois, M.D., Ph.D., MD Anderson provost and executive vice president. "The Cozzarelli Prize is a great honor for Cheryl, her lab and MD Anderson.

"The award also highlights the opportunities available for graduate students at MD Anderson," DuBois says. Co-first author Angela Alexander is a doctoral student in The University of Texas Graduate School of Biomedical Sciences, which is operated jointly by MD Anderson and The University of Texas Health Science Center at Houston (UTHealth).

The PNAS paper can be read here.

MD Anderson news release about the paper: Researchers Discover Second Protective Role for Tumor-Suppressor


By Danielle Walsh, The Morgan Welch Inflammatory Breast Cancer Research Program and Clinic

The Morgan Welch Inflammatory Breast Cancer Research Program and Clinic at MD Anderson is the first of its kind to focus on patients with inflammatory breast cancer (IBC). Since opening in October 2007, we've seen more than 300 IBC patients from across the country.

IBC.jpgTreating IBC requires the coordinated efforts of every member of the oncology team. Our multidisciplinary team of experts in medical oncology, surgical oncology, radiation oncology, diagnostic radiology, pathology and IBC biology are passionate and committed to fighting IBC.

The team of breast medical oncologists dedicated to IBC includes Naoto Ueno, M.D., Ph.D., Vicente Valero, M.D., and Ricardo Alvarez, M.D. They are further supported by advanced practice nurse Pam Alizadeh, who is available to see patients every day. 

Rounding out our team are radiologists Thomas Buchholz, M.D., and Wendy Woodward, M.D., diagnostic radiologist Wei Yang, M.D., and surgeons Anthony Lucci, M.D., and Gildy Babiera, M.D.

Breast Medical Oncology, considers it "a great honor and pleasure to direct the IBC clinical research with this highly motivated multidisciplinary team of professionals. As virulent as this disease is, the inflammatory breast cancer team responds with as much vigor and dedication to understand the biology of the disease and to develop novel therapies with the goal of eradicating IBC."

Unique to the Morgan Welch IBC Clinic is our IBC-specific and IBC-inclusive clinical trial portfolio available to patients. We lead the international IBC registry that collects epidemiological, pathological and historical information, as well as blood and tissue samples for future studies. We also offer a number of clinical trials investigating novel therapeutics in IBC.

By Matthew T. Ballo, M.D., associate professor, Department of Radiation Oncology, MD Anderson Regional Care Center in the Bay Area

ballo.jpg"Medicine should be seen primarily as caring for people's health rather than as fighting a war against disease."
                - Virginia L. Warren, Ph.D
                From the 'Medicine is War' Metaphor*

I first read these words almost 20 years ago and the message has had a lasting effect. The idea that we should think of our clinics as environments for caring for patients, rather than arenas for fighting, would seem obvious but does require some effort.


The thought of waging a war against cancer has an appeal to physicians and patients, for it raises images of an aggressive attack on an unrelenting enemy. It fulfills for physicians the desire to apply their skill in treatment, while for patients their desire for cure.

However, even with the best of intentions, the military metaphor overlooks the fact that patients sit at the center of this battlefield and disregards the gravity of collateral damage. Rather than speaking of how we are going to eliminate a patient's cancer, the conversation should focus on returning that patient to normal -- where cure is only one of many essential objectives.  


Taking the high road
Three years ago, we created a lifestyle rehabilitation program (The Road to Wellness Program) as part of a caring environment for patients receiving cancer treatment. The idea was to promote wellness, prepare patients for life without cancer, and reduce stress and fatigue -- all through education aimed at exercise, nutrition, stress management and smoking cessation.  

While this concept may not seem particularly groundbreaking in the era of survivorship and patient advocacy, it has required some change in our approach to patients receiving radiation treatments.

Traditionally, if a patient develops a specific need during radiation treatment, it is addressed by consultation with the appropriate ancillary care service. This model of intervention works well and serves the immediate needs of patients and care providers. However, it often does little to prepare patients for issues that may arise after treatment is compete. The motivation behind this model is reaction and the primary focus is to facilitate completion of treatment.  


Striking a balance
In the alternative model where caring is stressed, long-term patient needs, be they physical, psychological, social, spiritual or economic, are addressed proactively. General wellness is stressed just as much as radiation treatment, so that one is not viewed as more important than the other.  

A simple change in mind set where medicine is not viewed as a battle can permeate the treatment phase of the cancer journey and have lasting effects on our patients. When we consciously avoid the "medicine is war" metaphor and focus on wellness, we leave behind the negative imagery of destruction and create an environment where patients are returning to something familiar rather than moving into something unknown.

Source: *Warren, VL. HEC Forum 1991;3:39-50



Lois Ramondetta's connections to the Middle East are personal and professional. With a husband from the region, she travels frequently to the area and has grown to know and love the people and culture. 


As a result of her personal attachment, she has started to focus on developing collaborative research and knowledge-sharing relationships with her oncologist peers in the Middle East.

Dr Ramondetta and Nuhad.JPGThis fondness for the area and history of interaction made Ramondetta a natural fit for the scientific committee coordinating the Women's Cancer Conference held in late January in Beirut, Lebanon.

Although physician-scientists from several countries attended, including The Kingdom of Saudi Arabia, Iraq and Syria, the event was jointly organized by The Naef K. Basile Cancer Institute at the American University of Beirut Medical Center (AUB), King Hussein Cancer Center (KHCC) in Amman, Jordan and The University of Texas MD Anderson Cancer Center

For Ramondetta, the engagement was preceded by months of video conference calls and e-mail, but was well worth the effort.

"We had a wonderful time and everyone got so much out of the event," she says. "Our hosts were amazing, the discussions were lively and the conference should lead to even more collaboration."

As an associate professor and gynecologic oncologist at MD Anderson, Ramondetta, M.D., has been actively involved in research regarding endometrial and cervical cancer, quality of life issues for cancer patients, and the effect of socio-cultural-economic factors on patients and their care. She brought those interests, as well as a desire to better understand how treatment differs in various regions, to the recent meeting.

"One of the most interesting discussions in the conference was the final session," Ramondetta says. "Members from AUB and KHCC debated the pros and cons of the use of the HPV vaccine in the region."

To Ramondetta, the discussion illustrated that although the Middle East is predominantly a traditional and conservative region, physicians recognize the probability of change.

Physicians in the session debated the recognition of traditional values with the need for medicine to be proactive, as it addresses the prevention of sexually transmitted diseases and the development of an HPV vaccine plan. Although the issue was in no way permanently decided, to Ramondetta, the fact that difficult items such as these were discussed was encouraging and beneficial. 

Also of interest to Ramondetta, and a regional difference that made planning the conference challenging, was the disparate way physicians in the Middle East and elsewhere treat gynecologic cancers. While gynecologic cancers are normally addressed by gynecologic oncologists throughout much of the Western world, in the Middle East, they are often initially treated by a general surgeon or benign gynecologist, followed by a medical oncologist. Ramondetta sees this as an area to encourage collaborative research and training.

"We know women who receive care from a gynecologic oncologist do better during and after treatment," she says. "It would be great to work together to train specialists in this area."

Ramondetta's future collaborative efforts include working with Geri LoBiondo-Wood, Ph.D., associate professor in the Department of Nursing at MD Anderson, and colleagues at KHCC to develop a cooperative research project studying quality of life for cancer patients and the effect of different cultures. 

LoBiondo-Wood, Ramondetta and members of nursing administration from KHCC hope to apply to MD Anderson's Global Academic Program's Sister Institution Network Fund for support and to continue to bolster their research efforts.

"The fact that both AUB and KHCC are sister institutions only increases our ability to work together," Ramondetta explains. "These relationships are going to lead to a lot of opportunities in the future."

In the photo
: Lois Ramondetta, M.D., and Ibrahim Nuhad, M.D., organizers of the Women's Cancer Conference.





By Lucy Richardson, MD Anderson Staff Writer

In the latest Cancer Newsline podcast from MD Anderson, Lisa Garvin talks with Richard Lee, M.D., medical director of the Integrative Medicine Center, and Laura Michaud, manager of clinical pharmacy services, about the effects supplements can have on cancer. 


They discuss a variety of topics, from beta-carotene's impact on lung cancer to antioxidants' interference with radiation treatment. They combine their knowledge and expertise to help inform the public on the benefits and dangers of vitamin supplements.

In this episode they share three important tips for patients who choose to take vitamin supplements.

Bring your meds with you
It's important for doctors to have an accurate list of what the patient is taking. Doctors encourage patients to not only bring a list of drugs they are taking, but to also bring the bottles the medications come in -- both prescription and non-prescription items. It's important for supplements because so many have different ingredients. If it's a brand name, there might be five different kinds of that certain brand and it's difficult to know what's in it. It's also important to know dosages and whether it's a combination product or just a single agent product.

The most important recommendation for cancer patients is to maintain open conversation with their doctors.

Consult a dietitian
One of the biggest resources at MD Anderson is dietary consults with nutritionists. They help patients track what they're eating, how they're eating it and the way the food is prepared.

Dietitians help patients make better choices with whole foods and, if they need additional assistance, suggest a good general multi-vitamin. However, "a lot of the vitamins that are out there have mega-doses in them and you really need to be careful about the amounts of things and how they add up," Michaud says.

Supplementation can be an important part of staying healthy, especially for those who have diagnosed deficiencies. But patients as a whole should think about food and nutrition as a best source of vitamins and minerals, rather than trying to achieve that through pills, powders or liquids.

Reputable online resources
Through online resources, patients can check into the efficacy and safety of herbal or natural supplements. MD Anderson has several online articles and web pages that provide information about supplements and nutrition. The Learning Center at MD Anderson can also provide information on other reputable online resources.  

By Pamela Schlembach, M.D., MD Anderson Regional Care Center in The Woodlands

A cancer journey is a very personal and profound experience for both patient and physician. 

pinkhatsandgloves.jpgEvery day, as a radiation oncologist at the MD Anderson Regional Care Center in The Woodlands, I walk this journey with patients. But I'm also the facilitator of a large independent breast cancer support group called "Breast Friends." Many of the ladies in the group are my patients or former patients, but not all of them. As the largest breast cancer support group in the county, the ladies may be treated at the many hospitals in the area, but they all have much in common.

Restoring hearts
Last Wednesday, on a cold and drizzly evening, some 50 breast cancer patients and survivors found warmth, hope, support and love at Breast Friends' second annual "Pamper Me Night" at MD Anderson. With local businesses providing prizes, giveaways, dinner and sweet treats, the ladies were treated to free facials, massages, manicures and TLC, all under soft spa-like lights and with aromatherapy in the air.

The idea of Pamper Me Night came to me during one of our regular monthly meetings when the ladies were discussing Valentine's Day. In the course of discussion, a few of the women shared how the holiday no longer had special meaning to them. Some shared of loves lost during their illness, while others shared their loss of inner confidence and outer beauty. It was heartbreaking to hear this, and I had to do something.

I asked for donations for this event from staff members and local businesses and all were generous with gifts, time and talent. It was a huge success. 


Many of the same volunteers who helped said they found the experience just as rewarding as the ladies did. We had new volunteers, too, many from our new MD Anderson medical oncology staff and from St. Luke's The Woodlands Hospital. It was clear that the ladies felt so special and that's what we wanted to achieve. It's what they deserved.

Supporting each other year 'round

These special ladies are a source of inspiration to each other and to me personally and professionally. In less than a year, we have grown to a membership of more than 100. I have changed the format of the monthly meetings to take advantage of MD Anderson's many resources, including terrific speakers on the latest treatments and the many wonderful local resources in Montgomery County.

The meetings, which are open to any breast cancer patient or survivor, include an educational component in the first hour followed by support time when the women break into small groups. Speakers and discussion topics cover such things as hormones, diet, sexuality, body image exercise, cardiac disease, and what is new in treatment and research.

We also have special events throughout the year. In October, in honor of Breast Cancer Awareness Month, we had an evening of celebrating life and health. This year, St. Luke's The Woodlands Hospital radiology staff brought dessert and had us all doing the pink glove dance (see the photo) and parading in pink hats.

Join us
Breast Friends The Woodlands meets on the second Wednesday of each month, 7:00-9:00 p.m., at St Luke's The Woodlands Hospital, near the corner of Highway 242 and I-45, where the MD Anderson Regional Care Center in The Woodlands is located. We meet in the beautiful first floor conference rooms overlooking the lake. For more information call 713-563-0050, option 1 or 2.

If you know of anyone in Montgomery County, Texas, who has had breast cancer and is looking for a group like no other, please let them know we are here for them.

This group of ladies of all ages and all stages of breast cancer has been in existence for more than 14 years. Some have just been diagnosed, while others are 15-year survivors. I have been facilitator of the group since July 2009 and while I was reluctant at first to take on another commitment, Breast Friends has become something very inspiring in my life.

By Colleen Martin, MD Anderson Staff Writer

When fitness instructor Karen Franklin was diagnosed with breast cancer last year, her Zumba® classes kept her going.

"The combination of upbeat Latin music, dancing and the camaraderie among the people you're dancing with in class motivated me to keep working out, even during chemo," Franklin says.

legs dancing - dance.JPGThanks to Zumba, Franklin was so fit that she managed to avoid the side effects and depression that often accompany chemotherapy. And, thanks to the community atmosphere that developed in her Zumba classes, Franklin found the support she needed to make it through treatment. Some of her students even went with her to chemotherapy.

"Zumba is a great workout, but it's so much more than that," Franklin says. "For me, it was a lifesaver."

Franklin's story offers a good reminder about the role exercise can play in your overall health. By getting the recommended 30 minutes of physical activity and making healthy lifestyle choices every day, you can strengthen your body to prevent or fight off cancer.

Learn how you can amp up your workout routine in this month's issue of Focused on Health.
 
You'll find out how to dance your way into the exercise groove with dance classes like Zumba, nightclub cardio or belly dancing. You'll also learn how to ease into a running program with our step-by-step guide. Plus, get stretching tips and learn proper exercise techniques with our seven-day cardio and weight training videos. And, before you start working out, find out which foods can help fuel your workout.

For more tips on exercising, follow us on Twitter and join our conversations on Facebook.

An Unexpected Love Story

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By Gwen Darling

Top of Point Arena Lighthouse 3.jpgThree years ago, with a little help from eHarmony, Jack and I met and fell in love. At our age (almost 50!), neither of us ever expected to find the kind of "soul mate" connection that we immediately shared, or  in our wildest dreams imagined that we'd experience the sparks that appeared every time we were together -- like teenagers, but with the wisdom of age and appreciation. It was magic!

After three years of dating, we decided it was time to merge our households. With a considerable amount of give and take (I'll give you the biggest office if you take your collection of just plain weird artwork in there with you), we were thrilled to be starting this new chapter in our lives. 

Never expected cancer
In the midst of all this chaos, Jack scheduled a relatively minor procedure with his urologist, who suggested throwing in a routine prostate biopsy, since both Jack's father and grandfather had been diagnosed with prostate cancer.

Neither of us gave it much thought. Jack is young, his PSA was 2.5, and he had no symptoms whatsoever that would indicate a problem. So he never expected the phone call that came on Monday, Oct. 11, 2010, and I certainly never expected to hear the words, "Babe, I've got cancer."
 
I really never understood what cancer survivors meant when they said everything changed the moment they received their diagnosis. Sure, their understanding of their health status changed, but I now understand that's only one small part of what truly becomes an overall paradigm shift. 

After Jack's diagnosis, everything did change. Priorities became clear (he proposed -- finally!), and we threw ourselves into research mode, leaving no stone unturned in our quest for knowledge about the different treatment options available to us.

I say "us" rather than him because unlike many other types of cancer, prostate cancer truly does affect both members of the couple with many of the treatment options resulting in less than desirable permanent side effects such as impotence and incontinence. 

Although curing Jack's cancer was our No. 1 priority, we were also committed to seeking options that would allow us to continue our passionate romance for at least another 50 years because, hey, we were just getting warmed up!

Never expected proton therapy
Although the use of proton radiation treatment for prostate cancer has been around for more than 20 years, many urologists are reluctant to recommend it. Through our research, which included reading every book and medical journal article we could find, interviewing multiple medical professionals including urologists and oncologists, and, finally, speaking with friends and friends of friends who had been diagnosed and treated, we learned, sadly, that the couples we spoke with who chose surgery had traded a cure for permanent and undesirable side effects. We did not want to go this route if Jack qualified for another option, and fortunately, he did.

Our exhaustive research is what led us to the MD Anderson Proton Therapy Center. Next to the unbelievable good fortune of finding each other, we feel it's the greatest stroke of luck in our lives to have ended up there for Jack's treatment. From his first day of treatment on Dec. 13, 2010, to the final day on Feb. 7, 2011, we knew we had made the right choice for us. 

Although there is a closer proton therapy facility to our home in Tulsa, we chose MD Anderson because we felt confident that should any other complications arise, we would have access to the very best of the best across all disciplines. (Just a quick look at the credentials of Jack's physician, Dr. Choi, sealed the deal for us.)

Jack and Gwen Bridge.jpgNever expected a new family
Was it difficult (and expensive) to leave our businesses for 2 1/2 months? Definitely. Did we miss our family and friends over the holidays and the comforts of our new home together? More than you can imagine.  Would we do it again in a heartbeat? ABSOLUTELY! 

The doctors and staff at the Proton Therapy Center let us know at the onset that they truly cared about both of us. They backed it up with superior care, compassion and a level of personal connection that I am convinced is unique to the MD Anderson culture and experience.

In addition to the obvious benefits of receiving treatment at the most renowned cancer treatment center in the world, we also were surprised and delighted at the unexpected camaraderie and lasting friendships that develop among the proton patients and their significant others. 

We will miss our Wednesday evening dinners and the support of our new friends, but are certain that our paths will cross again. Perhaps at our wedding on March 12, where we will celebrate our love, our new life together and most of all, Jack's health, thanks to the amazing science, facilities and staff at the MD Anderson Proton Therapy Center.


Other resources
Read a newsletter written by Gwen's fiancé Jack during his treatment
Choosing the right treatment for prostate cancer
Is proton therapy right for you?
ProtonPals is a support and outreach group for those who choose proton therapy treatment at The University of Texas MD Anderson Cancer Center Proton Therapy Center.



By Will Fitzgerald, MD Anderson Staff Writer

What do Valentines and chimpanzees have in common? Well, probably not much, unless a group of patients from MD Anderson's Children's Art Project (CAP) are involved.

Last week, the children were busy decorating four large heart-shaped piñatas that they later filled with treats and presented to animals at the Houston Zoo as an early Valentine's Day gift. Each piñata showcased the creative artwork from young cancer patients at MD Anderson.

On a crisp Thursday morning, with wide smiles and Valentine piñatas in hand, the children marched into the zoo's African Forest, where they would meet some new friends -- a posse of curious chimpanzees.


After getting acquainted, the zookeeper took three piñatas and filled them with figs -- the ape equivalent of warm apple pie, explained the zookeeper. Then, the children watched as each piñata was dropped into the exhibit, much to their -- and the apes' -- delight.

Before long, one ape poked his head through the Valentine, while another pushed it around like he was shoveling snow. This occurred inches away on the opposite side of a glass wall while the kids watched with pure excitement. It was clearly time away from the difficult realities of a cancer diagnosis.



The apes weren't the only inhabitants getting in on the fun. Next, the children had one final Valentine to present to some larger zoo residents -- the rhinos. The piñata was placed in the middle of the exhibit. They, too, were curious. One rhino even sent his horn right through the middle of the Valentine. 

After the rhinos were satisfied, the day ended with an opportunity to hand-feed three large giraffes. When all was said and done, each patient shared a little love, and learned a little bit about life on the wild side.

By Rakhee Sharma, MD Anderson Staff Writer

According to the 2009 U.S. Census, Texas is home to 9.1 million Latinos -- a relatively young and rapidly growing population.

To reduce cancer-related health disparities among Texas Latinos during this influx, a $4 million, five-year grant from the National Cancer Institute will create a Texas regional Community Networks Program Center (CNPC), called Latinos Contra El Cancer.

"The number of Latino cancer cases is projected to increase dramatically in the next several decades. The center's efforts are designed to build capacity in the Latino community throughout the state to deliver evidence-based cancer prevention and control policies and interventions," says David Wetter, Ph.D., chair of the Department of Health Disparities
Research at MD Anderson
.

The center is a joint project of The University of Texas Health Science Center at Houston (UTHealth) School of Public Health and The University of Texas MD Anderson Cancer Center, which will combine innovative research, a multi-faceted training program and extensive community outreach to reduce cancer-related health disparities in Latinos. 

Research focus on smoking, diet and activity

The goal of the research program's  intervention study is to develop and evaluate innovative approaches to reduce cancer risk related to the three leading behavioral risk factors for cancer: smoking, poor diet and physical inactivity. It will focus on participants in Mano a Mano, which is a long-term health study of people of Mexican origin living in Harris County. The study collects information on participants and their families, including date, place of birth and health status, and updates the information regularly for up to 10 years.

Training: Strengthening the cadre

The goal of the project's mentored training program is to prepare new and early stage investigators to conduct cancer disparities research in Latino communities. An emphasis is on building skills and capacity to conduct community-based participatory research.

Outreach: Understanding and engaging community partners

The goal of the project's outreach program is to increase the use of evidence-based cancer control interventions in communities by building on existing community partnerships, infrastructure and programs.

Maria Fernandez, Ph.D., associate professor of Health Promotion and Behavioral Sciences at the School of Public Health, and principal investigator on the outreach core, says, "There is a tremendous amount of knowledge, experience and expertise in the community that needs to be tapped into if we're going to have a real impact."

For more details on the CNPC, see the news release.  


After a long and successful career in broadcast journalism in Houston, North Texas and Oklahoma, Judy Overton joined MD Anderson in 2008 as a senior communications specialist. Her husband, Tom, was treated at MD Anderson for renal cancer. He died in April 2007. Judy's occasional posts will cover aspects of the cancer experience from the caregiver's perspective. Read more posts in this series

Do you recall in the previous Caregivers Chronicle that we were told "neurologic problems might crop up" during or after Tom's IL-2 treatments for renal carcinoma?

Well, they did.

On Dec. 18, day two in his ninth floor hospital room, Tom decided to go for a walk -- down to the first floor, in his hospital gown -- and was escorted back to his room by security.

He insisted that the National Public Radio program, "Wait, Wait, Don't Tell Me," was talking about his "escape."

He also asked me, "Who's renting this apartment, anyway?"

Later he asked me, "What time does this place close?"

And the most far-fetched statement I recorded that day: "I know why the Israelites took so long to get to the promised land. They had a bunch of urologists chasing them with buckets."

Thankfully, Tom was lucid most of the time.


caregivers2.jpgA rough homecoming
He was surprised to learn he weighed 248 pounds on Dec. 17, the day he moved from ICU to his current room. He'd entered MD Anderson weighing 224 pounds. Tom didn't want to eat much, and his breathing was labored.

Within the next couple of days, Dr. Papadopoulos administered a special treatment to open up Tom's airways so he could breathe better. There was congestion on his lower lung levels, which the doctor said he just needed to cough up.

On Dec. 21, we learned Tom had an infection at the point of entry at the white central venous catheter (CVC) line. It was removed before he went home Dec. 23.

Once he got home, Tom was miserable. Our heating system went out on Christmas Eve, and the next day he told me he thought he would die that night. IL-2 left his skin prickly and extremely dry, so the extreme cold in the house, although unpleasant for everyone, was even worse for Tom. Luckily, the heating repair people agreed to a Christmas morning visit.

Resolving to make it
Within a week, we were back at MD Anderson for Tom to get a CVC line in his chest inserted for his second round of IL-2. Since it was New Year's Eve, we wrote our 2005 goals.

Tom's top three:


  1. Beat cancer
  2. Finish his novel
  3. Earn his master's degree 

Amazingly, he accomplished two of the three within the next six months.

MD Anderson is at a Level 2 due to winter storm conditions in the Houston area. The National Weather Service has issued a Winter Weather Advisory due to the chance of freezing drizzle and temperatures in the mid to upper 20's by the afternoon. Wind chill values between 15 and 25 with wind gusts as high as 30 mph are predicted for tonight and early Thursday.

MD Anderson will continue to monitor the weather situation. You're encouraged to monitor local news reports and take appropriate precautions.

We are currently open for all normal business operations including patient appointments.


By: Lorenzo Cohen, PhD, Sarah Prinsloo, Ph.D., Alejandro Chaoul, Ph.D.

Stress generally occurs when an event or situation (stressor) places demand upon us that exceeds our coping abilities.  

Stressors in our lives are many and varied, but usually are characterized by an event that is challenging, harmful, induces fear or represents loss. 


Our hardwired physiological response to stress results in an increase in sympathetic nervous system activity. For example, when we need to get away from danger quickly, our heart rate increases, we breathe faster and shallower, we perspire, blood is shunted to our muscles and we engage for action. 

Under stress, other body systems tend to decrease function, for example digestion, so that more energy can be spent on those systems that will best help the body deal with the stressor. We often refer to this physiological response as "fight or flight."  

To counter-balance the sympathetic response once the stressor is over, the parasympathetic system engages, decreasing heart rate, slowing breathing and relaxing muscles. This allows us to return to our pre-stressor balanced state of functioning.  

Our bodies naturally lean toward a parasympathetic state, but when stress becomes chronic we end up living under a constant sympathetic state. The health damaging effects of this chronic stress state are well documented in the medical literature.

Stress and the brain
The brain responds in the "fight or flight" way and, in fact, may be viewed as the major orchestrator of the response; the conductor if you will. 

The brain usually shifts into a high-alert, brain-wave activity state while the stressor is present and then shifts back to more relaxed activity once the stressor is gone (usually slower; parasympathetic tone).

Under chronic stress, it becomes more difficult for the brain to switch between sympathetic and parasympathetic arousal. So, the brain and the rest of the body rarely get a chance to recover, even if the stressor is no longer present.  

A key factor to managing chronic stress is teaching the brain to become more flexible to help maintain a healthy balance between sympathetic and parasympathetic arousal. Meditation is one method to increase brain flexibility.

meditattoon.jpgHow mediation helps
Meditation has been described as "a wakeful hypometabolic physiologic state" in which the practitioner is extremely relaxed, yet alert and focused.

Although meditation methods can vary, most types of meditation share common features. These include the focused, controlled regulation of breathing and control over thoughts and feelings that come to mind, whether the goal is to inhibit and/or acknowledge and release external thoughts and feelings.

Given the continuous attention-based processes involved in initiating and maintaining a meditative state, meditation has been proposed to be an attentional training exercise.

Meditation, among other things, helps bring awareness to the relation between the mind and body -- acknowledging the constant dialogue and bidirectional effect that the mind and body have on each other.

The impact of meditation on the brain
Meditation may help the brain invoke the parasympathetic response to chronic stress, to balance the sympathetic strain. Brain activity is 98% electrical, and brain rhythms are classified into groups according to the speed that they relay information:

  • Delta is the slowest and is predominant in sleep states.
  • Theta can equal a state similar to daydreaming.
  • Alpha is associated with relaxation
  • Beta is associated with attention and intellectual activity.  
Brain research has shown that the mechanisms of meditation induce electrical frequencies that are thought to be in part the switch between hyper-arousal and relaxation. For example, under meditation conditions the brain often produces the alpha wave. Alpha triggers mental relaxation and is an idle rhythm of the brain, as it waits for cues from other parts of the body and the environment.

This and other brain electrical rhythms affect neurotransmitters, such as dopamine and serotonin, which are also essential in maintaining a healthy balance between sympathetic and parasympathetic arousal and managing the stress response.    

Meditation, therefore, helps regulate relaxation in the body through a bidirectional conversation between electrical and chemical messages in the brain and the translation of those messages by the rest of the body.

A feedback loop follows, where the brain receives signals from the rest of the body about the current state of arousal. As meditation with awareness continues, the body continues to relax and achieve a better balance of its functional systems. Consequently, meditation can help to regulate chronic stress, facilitating the integration of the mind and body.

Overall health effects

Meditation research is finding that mind-body practices have an effect on all systems in our body (e.g. immune, hormone, neurotransmitters and even gene expression to name a few), improving aspects of quality of life, and creating fundamental beneficial changes in the way the brain works. The neurological effect of meditation demonstrates the brain's profound ability to change itself through experience.

This new frontier of medicine is revealing how important it is to manage chronic stress and how influential our behaviors are on how our brain works and our overall health and well-being. 

Meditation is one such healthy behavior to achieve balance and teach our brain flexibility. Meditation techniques are many and varied. Find a form that works for you and practice daily.


The term bioethics was first used in the early 1970s to address the ethical implications of genetic and ecological interventions. But it was soon applied to all aspects of biomedical ethics, including health care delivery, research, and public policy. 


Its literature draws from disciplines as varied as clinical medicine and nursing, scientific research, theology and philosophy, law, and the social sciences -- each with its own distinctive vocabulary and expressions.

History of bioethics
In 1970, Van Rensselaer Potter II, an American biochemist and professor of oncology, created the term bioethics to describe a new philosophy integrating biology, ecology, medicine and human values (Bioethics: Bridge to the Future, Prentice-Hall, 1971). It covered, in his mind, what we now call environmental ethics and biomedical ethics. 

Because of the appropriation of the term bioethics in medicine, Potter chose to use the term global bioethics in his book, Global Bioethics: Building on the Leopold Legacy, published in 1988.

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Recommended readings in bioethics
For a broad overview of the history of medical ethics, one can benefit from A.R. Jonsen's book, A Short History of Medical Ethics (Oxford University Press, 2008). He tells the story of more than 2,000 years of moral discourse about medicine, covering traditions in both the East and West. 

The book highlights particular events and persons, showing that even though there are some cultural differences, common themes coalesce in a long tradition of the ethics of medicine.

If you like story telling or enjoy our Difficult Case Reviews, you will be interested in the book from P.J. Ford and D.M. Dudzinski (eds.) called Complex Ethics Consultations: Cases that Haunt Us (Cambridge University Press, 2008). Twenty-eight detailed cases explore the ethical reasoning, professional issues and emotional aspects of these impossibly difficult consultations. The cases are grouped by theme to aid teaching, discussion and professional growth.

Additional resource
bioethics.jpgIf you prefer encyclopedias, dictionaries and glossaries, then A Handbook of Bioethics Terms by JB Tubbs (Georgetown University Press, 2009) could be a good introduction to the field with over 400 entries on the significant terms, expressions, titles, and court cases that are most important to the field. It is surely more user friendly than the 3000 plus page Encyclopedia of Bioethics edited by SG Post (Macmillan Reference USA, 3rd edn., 2003)!

If you prefer "classics" in the field, try reading T. Beauchamp and J. Childress': Principles of Biomedical Ethics (6th edn., Oxford University Press, 2008). It teaches the widely-known "Four Principles Method": beneficence, nonmaleficence, autonomy and justice. No one can understand the field of bioethics in the United States apart from this volume. The latest edition integrates case studies throughout the text, rather than presenting them in an appendix as in previous editions.

If you are looking for practical guides to help you at the bedside, two short books can be recommended. The first is Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine by AR Jonsen, M Siegler and WJ Winslade (7th edn., McGraw-Hill, 2010). Clinical Ethics presents the, "Four-Topics Method" to help you make the right choice when facing complex ethical questions and dilemmas encountered during everyday patient care. It goes beyond theory to offer a solid decision-making strategy applicable to real-world practice. The second, Doing Right: A Practical Guide to Ethics for Medical Trainees and Physicians (Oxford University Press, 2008) written by PC Hebert, offers a variety of clinical vignettes and concise teaching.

Finally, on-going discussions in bioethics and useful information can be found in The American Journal of Bioethics (AJOB).




by: Lucy Richardson, MD Anderson Staff Writer

Treatment for lung cancer depends on the type of tumor and stage at the time of diagnosis. When lung cancer is diagnosed at its earliest stage, about 65% to 70% of patients can be treated with surgery alone. Patients who cannot have surgery may now benefit from a new radiation therapy technology called stereotactic radiation therapy or STARS.

This treatment uses special equipment, where radiation can be given at a very high dose specifically to the tumor, so normal tissue is not harmed. Treatment can typically be given in three or four days instead of the five or six weeks required with traditional radiation.

Several studies have reported local control and survival similar to that achieved by surgery using stereotactic radiation therapy. As a result, this treatment is now being considered as an alternative to surgery for patients who meet the criteria. However, before stereotactic radiation therapy can be considered as an alternative to surgery, a clinical trial must be completed.



STARS clinical trials
When a new treatment is developed, it must go through a series of clinical trials to see if it is safe and effective. The purpose of this study is to compare stereotactic radiation therapy, given in this trial with the Cyberknife®, to surgery alone for stage I operable lung cancer.

"I encourage my patients to participate in clinical trials because it provides the opportunity for them to receive the newest treatments which they otherwise could not receive as well as help other patients in the future," says Jack A. Roth, M.D., F.A.C.S.

The STARS clinical trial is being conducted at sites around the world. Access  clinicaltrials.gov for more information and a list of participating cancer centers.

MD Anderson remains at Severity Level 2 due to winter storm conditions in the Houston area. We are currently open for all normal business operations including patient appointments.

Due to ice on roadways, bridges and overpasses, there have been some road closures and travel has been difficult in affected areas.

Temperatures are predicted to be below freezing again Friday evening. MD Anderson will continue to monitor the weather situation. You're encouraged to monitor local news reports and take appropriate precautions. The next update will be at 5:00 a.m. Saturday Feb. 5.

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My Oncology Dream is a new nationwide competition in Japan, among oncology professionals, for the opportunity to spend a year at MD Anderson. 

Candidates are selected based on their academic achievements, clinical track record and, above all, on their dream of improving cancer care in their hospital -- where they will likely return after the year is over. 

It is also a social movement. Visitors can see people posting their dreams directly to the Japanese: My Oncology Dream website.

The program was created by the Japan Cancer Society and the Oncology Education Project Association, both of which were represented at the Jan. 11 ceremony where Hiroko Masuda, M.D., was presented with the first My Oncology Dream award. 

Masuda is a graduate of Kochi University Medical School and completed her training at Okayama University Hospital, where she now practices as a surgical oncologist and performs research on triple-negative breast cancer. Her dream is to provide the best care for her patients through teamwork that will help bring cutting-edge clinical trials to her institution, when she returns after her year at MD Anderson.

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The president of the Japanese Cancer Society, Tadao Kakizoe, M.D., congratulated Masuda on her achievements and selection, and JCS Chairman Shin-ichi Hakoshima, M.D., spoke about their vision of innovative programs to support networking and new approaches to cancer in Japan. 

The Oncology Education Project Association was represented by Naoto Ueno, M.D., Ph.D., professor in the Department of Breast Medical Oncology at MD Anderson and an innovator of several training programs in oncology in Japan. Ueno emphasized his dream of bringing multidisciplinary care and new trials to Japan, and saw the kind of connections that My Oncology Dream will build as essential to reaching this goal.

The event was also attended by Agnes Chan, Ph.D., who is an educator, a champion of the fight against cancer, a UNICEF goodwill ambassador, as well as a novelist, pop singer and television personality. 

Chan gave closing remarks, praising the JCS and Oncology Education Project Association for their vision and encouraging everyone to continue the battle against cancer. She also encouraged Masuda to make use of her year in the United States to get to know its people and see some of its sights, so that when she returns to Japan she can be a good connection between the countries and their oncology communities.

Masuda will start her visit at MD Anderson in April and will be working with faculty in the Nellie B. Connally Breast Center.

In the photo (from left): Naoto Ueno, M.D., Ph.D.; Agnes Chan, Ph.D.; Hiroko Masuda, M.D.; and Oliver Bogler, Ph.D., at the Tokyo American Center where the My Oncology Dream award was given to Masuda.

Jacqueline Miller is one of MD Anderson's inflammatory breast cancer ambassadors. She is not an IBC patient, but is on the board of directors for the Inflammatory Breast Cancer Foundation and is active in spreading the word about IBC in the African-American community.

By Jacqueline Porterfield Miller, Inflammatory Breast Cancer Foundation, Board of Directors

jackie miller.jpgInflammatory breast cancer (IBC) is the most aggressive (fast growing) and deadly form of breast cancer. It is a rare malignancy that is often initially misdiagnosed as an infection or rash. 


IBC is not a new type of breast cancer. It is very important to distinguish IBC from other types of breast cancer because there are major differences in its symptoms, prognosis and treatment. However, getting the correct diagnosis quickly is critical for patients because the disease spreads beyond the breast in a matter of just days or weeks.

Inflammatory breast cancer is a disease that needs more attention and more education. 

IBC forms sheets or nests of cancer cells that block the lymph vessels in the skin of the breast, not the usual lump women are told to look for, thus rarely seen on routine mammograms. Inflammatory breast cancer may cause the breast to become red, swollen and warm.

The numbers speak volumes
The American Cancer Society estimates that IBC accounts for 2.5% of all breast cancers in the United States, with 192,370 new diagnoses and 40,170 deaths expected this year. The five-year survival rate is between 25% and 50%, mainly from misdiagnosis, from the community's lack of expertise in treating IBC.

Ten percent of inflammatory breast cancer cases are in African-Americans women, and we have the highest mortality rate from IBC. We are indeed at risk. The rate in African-American women is at least double that among whites. We comprise only 8.4% of all breast cancer cases.

Every 12 minutes a woman dies from breast cancer and every year more than 5,000 African-American women die from breast cancer. We make up 12.6% of all IBC cases. 

Why African-American women?
African-American women are more likely than all other women to die from breast cancer. Why? Maybe because we lack access to services, or because when diagnosed we are likely to be more advanced in the stages of breast cancer.

We are associated with a poorer overall survival rate for all breast cancer. But why this is so is still unclear. 

Other reasons may be because:
  • there are fewer treatment options,
  • not being able to get health care or not following up after getting abnormal test results,
  • mistrust of the health care system and the belief that mammograms are not needed,
  • a lack of knowledge and, most important,
  • not knowing that you don't need to have a lump to have breast cancer. 
IBC occurs more frequently and at a younger age in African-American women. Some researchers believe that African-American women are less likely to seek treatment for any kind of breast cancer and others believe that these treatments are less available to African-American women.

Time to take action
I believe and agree with many oncologists that screening guidelines need to be changed in reference to African-American women, because more than 10% of cases are developed by the time a woman has reached age 40. 

Research has documented that 20.5% of African-American women refuse chemotherapy and 26.3% refuse chest radiation. Access to health care, cultural beliefs, and demographic and socioeconomic factors play a role in the refusal.

It is my goal to get more attention and much-needed sources of information to physicians, patients, communities and the general public (media), and to African-American communities. 

It is imperative to change the perceived notion that all breast cancer has a lump. Through education and awareness, this can and must change. 

I cannot stress enough that this is a silent killer, which can appear over night and without any signs. Looking for lumps, having mammograms and/or seeing your doctor is not enough.

None of this will save you from this insidious breast cancer killer -- one that women and men know virtually nothing about. And it's something every one must know. Education, awareness and knowledge are what save lives.

We must not only look for lumps, but look for changes.

Inflammatory Breast Cancer (IBC) Foundation  
http://www.eraseibc.com/  
1-866-944-4223  

Screening Can Be a Lifesaver

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Clinician says colonoscopy and great treatment saved his life

Renato Lenzi, M.D., gets to the heart of the matter when I tell him I perpetually postpone my colonoscopy.

"Without regular colonoscopies and the great treatment I received at MD Anderson, I would be dead," says Lenzi, a clinical associate professor in GI Medical Oncology.

After he was diagnosed with colon cancer in 2002 during a screening, Lenzi endured months of treatment that included surgery, six months of chemotherapy and five weeks of chemotherapy with radiation.

Although he may be a nine-year cancer survivor, Lenzi's haunted daily with side effects of the treatments, including body image changes, fatigue, difficulty sleeping and occasional increased anxiety related to medical testing.


 
The difference between talking about war and living it.
"As a doctor, you basically know what the side effects are," Lenzi says. "You've seen a number of patients, so you know the data. You understand the meaning to a point."

But when the tables turn and the symptoms and the issues become your own, he says, you know exactly what you're talking about.


"I have a better idea than I did before of the implications of the medication we give to people and what they're going to feel like. It's like talking about the war, and then having been in it."

This cancer warrior is being recognized by his colleagues as the honoree of the 2011 Sprint for Colorectal Cancer Prevention and Education (SCOPE) 5K, Saturday, March 26, 8:00 a.m., on the MD Anderson campus.

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Race for education and prevention
The goal of SCOPE is to educate the general public about colorectal cancer. Excluding skin cancers, colorectal cancer is the third most common cancer diagnosed in both men and women in the United States. The American Cancer Society says in 2010 there were:

  • 102,900 new cases of colon cancer (49,470 in men and 53,430 in women)
  • 39,670 new cases of rectal cancer (22,620 in men and 17,050 in women)

Learn more about colon cancer, colonoscopies and colonoscopy preparation.

To participate in the SCOPE 5K, visit mdanderson.org/scope.

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. 
reggieHeadShot.jpg
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.
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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

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