Researchers at the St. Jude Children’s Research Hospital and the Washington University Pediatric Cancer Genome Project have linked gene mutations not previously tied to cancer to the rare but deadly brain tumor diffuse intrinsic pontine glioma (DIPG). DIPG accounts for 10% to 15% of pediatric tumors of the brain and central nervous system. It aggressively attacks the brainstem and kills more than 90% of its victims within two years.

“We are hopeful that identifying these mutations will lead us to new selective therapeutic targets, which are particularly important since this tumor cannot be treated surgically and still lacks effective therapies,” Suzanne Baker, PhD, corresponding author of the January 29 paper in Nature Genetics and co-leader of the St. Jude Neurology and Brain Tumor Program, said in a statement. She holds the Sydney Schlobohm Chair of Research funded by the National Brain Tumor Society and is a member of the NBTS Scientific Advisory Council.

Dr. Baker and colleagues, in research partially funded by the NBTS, discovered that specific mutations in the HRF3A and HIST1H3B genes existed in almost 80% of the DIPG tumors they studied. These gene mutations also were present in pediatric glioblastoma tumors they studied, but not in other tumor types.

These genes encode histone proteins that organize the structure of DNA in cells and regulate how genes are expressed. In the pediatric tumor cells, their mutation is thought to interfere with these functions. The researchers are now trying to determine how the mutations are involved in development of these pediatric tumors.

The Pediatric Cancer Genome Project is an ambitious three-year project to sequence the normal and cancer genomes of 600 children with poorly understood, aggressive pediatric cancers, with the goal of finding new tools to diagnose, treat, or prevent diseases.

A re-analysis of clinical trial data shows that a combination of radiation and chemotherapy can double median survival time for some patients with a rare brain tumor, oligodendroglioma—from 7.3 to 14.7 years.

The affected patients are ones whose tumor has sections of chromosomes 1 and 19 deleted.
Principal Investigator Gregory Cairncross, MD, of the University of Calgary in Canada, says the re-analysis gives us “unequivocal evidence that the chromosomal structure of 1p and 19q co-deletion can be used as a marker to determine which patients will benefit from combined chemotherapy and radiation.” Dr. Cairncross has been an active advisor to the National Brain Tumor Society for several years.

An extra seven years would provide valuable family time for brain tumor patients. Moreover, such an increase in survival might be just enough time for researchers to develop a new therapy that could provide more time—or possibly a cure.

In the clinical trial, 286 patients with aggressive oligodendrogliomas received either radiotherapy alone or radiotherapy plus PCV chemotherapy (procarbazine, CCNU[lomustine], and vincristine).  In the first analysis (2006), when patients had been followed for three years, survival time amounted to 8.7 years for patients with the 1p19q deletion and 2.7 years for patients without the deletion.

In the re-analysis, after patients have now been followed more than 11 years, patients whose tumor has the deletion who received the combination treatment had overall survival times of 14.7 years compared to 7.3 years for the patients whose tumor did not have the co-deletion.

This news highlights the importance of Phase III clinical trials to produce actionable results. It also highlights the importance of tumor tissue collection and analysis for potential use in personalized medicine.

Tuesday night, President Obama delivered the State of the Union address. This annual speech in front of a joint session of Congress provides an opportunity for the President to lay out key national priorities for the coming year. Members of the brain tumor community connected on Twitter as we watched, eager to see a strong commitment from the President on our top issues.

As many expected, the President focused primarily on jobs and the economy. While we didn’t see a strong emphasis on our key issues, we were excited by and appreciative of the nod to advances in cancer research. Increased funding for cancer research is a major policy priority for our advocates.

In these difficult times, there are so many issues vying for the nation’s attention. By uniting our voices, we can ensure that policies impacting brain tumor patients and caregivers are given the consideration and support that they need and deserve. We are making great strides and, with the support of policymakers in Washington, DC, we will continue fight for more research, better treatments, and improved health care until a cure is found.

Will you help us draw attention to these critical issues? Your voice and your story can make a difference. Become an advocate today. Let’s make 2012 the year to fight brain tumors.

(Today's blog comes from David R. Hurwitz, PhD, the Richard B. Ross Chief Scientifc Officer of the National Brain Tumor Society).

"Brain tumors are just about as complex as biology gets:  many types and subtypes, intricate aberrant and interacting signal transduction and biochemical pathways, evolving genomic mutations, phenotypic plasticity, cellular heterogeneity, and bidirectional interactions with the microenvironment that support tumor growth and resistance to therapies. A recent article by Jonah Lehrer in Wired discusses the limitations and failures of reductionist research to yield effective and safe new therapies for diseases that involve even what has previously been considered very direct and straightforward biology. An example he discusses is the stunning Phase III failure of torcetrapib to reduce heart disease (it actually increased heart failure and mortality) by tweaking the cholesterol pathway in what seemed an obvious approach emphasizes that limitation. The biology was simply more complex than thought.

In light of the yet already known biological complexity involved in such brain tumors as glioblastoma, how likely does it seem that new effective therapies that inhibit individual or multiple targets will be developed without utilizing systems biology research approaches that embrace that complexity?"

Read the full article here.

If you haven't decided on a New Year's Resolution, here is something to try - mindfulness meditation.

Everyday life is full of stress and if you are a part of the brain tumor community, there can be added stress and limitations around what you can do to alleviate it. Mindfulness meditation is an an easy and free coping strategy.

The National Center for Complementary and Alternative Medicine is a resource to help you start your mindfulness meditation. All that it requires is an open-mind and can-do attitude.

Let’s begin, make sure you have a 30-40 minutes on that can be as distraction-free as possible. These tips are taken from National Center for Complementary and Alternative Medicine’s Meditation Overview.

1. Find a quiet space - this generally makes it easier to focus and relax. This can be outside in the sunshine or on the floor in your closet, wherever you need to be for relative silence and fewer potential distractions.

2. A comfortable position - this can be sitting, lying down, standing or walking. Pick something that will remain comfortable.

3. A focus of attention - pick a quote that you like or a song lyric, visualize the sun warming you, think about a memory that makes you happy and calms you. It does not matter what you choose to focus; all that matters is that you have focus. Sometimes feelings arise and you can choose to focus on those, but remember your focus.

4. Finally, remember to have an open-mind and can do attitude. There is no wrong way to meditate and your experience is individualized and for your own wellness only.

Start slowly and try to build up to a full half hour. Try not to be discouraged if you struggle, keep at it. Spend 30 minutes investing in yourself and your feelings this week.

Let us know how you do by posting a comment.

It’s almost time to say goodbye to 2011 and hello to 2012! Each year, I end up waiting until the last minute and quickly make a New Year's resolution in my mind as the ball is dropping. They change slightly each year, but they tend to share a similar theme. Like most of you, it was probably to visit the gym more often or read more books. This year, while you are waiting for the ball to drop, here are some fun facts you can share with those around you.

• The first New York ball was 700 pounds and 5 feet in diameter. The ball was made from wood and iron.
• The modern ball is made from Waterford Crystal and weighs over 1,000 pounds. There are over 9,000 LED lights, but uses hardly any energy. The ball begins to drop at 11:59 and completes the journey exactly at midnight to ring in the New Year.

What are your New Years resolutions? Post a comment!

Picture credit: blog.light.innovations.com

On December 23, 1971, President Richard Nixon signed the National Cancer Act into law, officially declaring “War on Cancer.” Nixon declared, “I hope in the years ahead we will look back on this action today as the most significant action taken during my administration.”

The historic legislation supported the National Cancer Institute research programs and launched the United States’ clinical trials programs, among other things. As a result of the past 40 years of research, millions of people with cancer have benefitted from better therapies and increased knowledge of the disease. Since 1990, cancer mortality rates have declined steadily.

But that progress has not translated to brain tumors. Brain tumors are highly complex and able to adapt to and resist treatment. In fact, only one new treatment has been approved in the last 30 years. And brain tumors remain the most devastating of all the cancers, a fact that thousands of families know all too well. But the last 40 years of research has provided vital information that can be used to make a change. 

“Recent advances in understanding cancer at the molecular level have set the stage for a new era of cancer medicine, in which cancer patients will be treated based on their molecular profile,” according to the American Association for Cancer Research’s Cancer Progress Report 2011. “Hard-fought progress over the past 40 years by the entire cancer research community…now provides unprecedented opportunities to translate current discoveries of the critical molecular changes that drive cancer into improved patient care.”

On this 40th anniversary of the declaration of the war on cancer, the National Brain Tumor Society is taking advantage of these opportunities. We are standing together with the brain tumor community - pulling together the tools, putting strategies into action, and working with allies – so that we can look back on these actions as the most significant taken in the war on brain tumors.

Complementary and alternative medicine can range from cancer prevention diets, to massage, acupuncture, exercise, and supplements. What are some realistic and affordable CAMs that patients and families can incorporate into their “treatment plan” to improve overall wellness and feel better?

Here are some suggestions for affordable ways to incorporate self-care and CAMs into brain tumor management.

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Find free or reduced cost programs in your community

-Seek out free yoga, meditation or other classes offered near you—these may occur at churches, sporting stores or community centers.

-Explore community acupuncture—acupuncture that is done in a community setting so that costs are lower and more people can experience acupuncture. Costs are reduced to as low as $15 per treatment. A national database of community acupuncture clinics can be found here.

-Find a local Student Massage Clinic where you can get massages from $20-40 per hour, and no tips are allowed! Or reach out to your family and friends and exchange massages, facials, pedicures, it’ll feel nice and you will be in good company.

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Cook cancer prevention meals at home
Research has shown that a “Rainbow on your plate” is great advice to keeping cancer at bay and part of living a healthy lifestyle. Speak with your Oncologist or a Registered Dietician to see what recipes or cookbooks are on their shelves. Also explore the National Institutes of Health’s National Center for Complementary and Alternative Medicine website for many resources on the cancer diet.

To wet your appetite here's a recipe full of delicious and cancer battling ingredients courtesy of American Institute for Cancer Research.

Pineapple Chicken Stir-Fry

Sauce:
1 1/2 Tbsp. reduced-sodium soy sauce
2 Tbsp. unsweetened pineapple juice
1 Tbsp. fat-free, reduced-sodium chicken or vegetable broth or water
2 cloves garlic, finely minced
1 tsp. cornstarch

Stir-Fry:
8 oz. boneless, skinless chicken breast, cut into 1-inch pieces
1 tsp. reduced-sodium soy sauce
1 tsp. seasoned rice vinegar
1/8 tsp. ground ginger
1 Tbsp. sesame oil, divided
1 small carrot, sliced into 1/4-inch pieces
1/2 medium green bell pepper, seeded and cut into 1/2-inch pieces
1/2 cup snow peas, cut in half lengthwise
1/3 cup chopped green onion, green part only
1/2 cup pineapple chunks, fresh or canned in unsweetened juice and drained
1 cup cooked brown rice

In small bowl, whisk together sauce ingredients and set aside.

In another small bowl, mix chicken with soy sauce, vinegar and ginger. Set aside to marinate.

In nonstick skillet, heat 1/2 Tbsp. oil over medium-high heat. Add carrot and green pepper, stir-frying for 3 minutes. Add snow peas and stir-fry another 2 minutes. Remove vegetables from pan and set aside.

Add remaining oil to hot pan. Add marinated chicken. Stir-fry constantly until chicken is cooked through, about 3 minutes.

Return vegetables to pan. Add onion and stir-fry for 1 minute.

Add pineapple. Stir sauce and pour over mixture. Stir-fry until sauce thickens, 1-2 minutes.

Serve over brown rice. Makes 2 servings.

Per serving: 396 calories, 9 g total fat (2 g saturated fat),
45 g carbohydrates, 32 g protein, 6 g dietary fiber, 709 mg sodium

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Bon appétit! Please always inform your treatment team of activities and diets or supplements you are thinking about. It is important that both the CAM practitioners and your physicians know what is going on because of possible interactions.

Share with our community any great recipes or wellness activities that you and your supporters have started as a way to feel better during and after treatment!

Blog reposted from October 7, 2010

Photos credits
Flickr (MuddyRootsYoga)
tasteofhome.com

Question:
How can I better handle the stress of the holidays?

Answer:
Holidays can often bring feelings of anxiety and stress. Add fatigue, difficulty multi-tasking and the extra activity of holiday preparations and visitors, and you’ve got a recipe for… well, something other than holiday cheer. So how DO you get through the holidays with some sense of warm, fuzzy feelings?

Here are a few simple ground rules:

1. Split up the tasks. Assess the strengths of each family member and assign tasks accordingly.

2. Communication is KEY. Be honest about your feelings about the holidays, assess how you are feeling physically, mentally and emotionally, and communicate this to your loved ones. An open dialogue can help relieve anxiety and can create opportunities to discuss how to approach the holidays, how to create new traditions, plus allow you to reach out to loved ones who are there to help.

3. Reflect. The holidays are a time of self-reflection, and it’s important to take the time to look back and reflect at all the challenges you’ve been able to overcome. Despite the difficulty, you haven’t fallen apart. You’ve been through a lot, and it’s O.K. to acknowledge that during the holidays!

4. Consider new traditions. It might not be possible to continue certain traditions that you were used to before. It’s important to assess where you are and what you feel you can do. Set realistic expectations for yourself so that holidays don’t become a burden. What new traditions can you start as a family? What will it take for you to enjoy the holidays without over-extending yourself?

5. Keep an eye on the time! Give yourself the freedom to keep holiday visits short, calm and peaceful. The usual hustle and bustle of the holidays often involves lots of people, hectic and stimulating atmospheres and crammed schedules. This can be extremely overwhelming and exhausting. Limit the number of visitors and activities to avoid bringing on extra fatigue.

6. Check in with your emotional thermometer. During the holidays, we often put on a cheery disposition for the sake of the holiday spirit. Don’t suppress your feelings! Allow yourself to experience what you are feeling. It’s ok to feel sadness, anger, or even relief. This is important for both patients and caregivers.

Blog reposted from December 8, 2010

Image credit: befitandstrong.com

Holiday season is upon us and for many families that means family traditions! In our home, we get take out on Christmas Eve and eat way too many cookies.

When you are living with a brain tumor in your family, holidays can be a challenge. All the excitement, events, and activities can leave fatigued survivors and caregivers flat out exhausted. Similarly, it can be hard when you cannot participate in all the activities in the way that you used to. If you have lost a loved one, the holidays can be sad and feel lonely. This week we are talking about the holidays.

What did you do differently the first holiday after you or your loved one was diagnosed? What traditions have become important to you at the holiday season?

Blog reposted from December 6, 2010

Image credit: whitegadget.com

Advance directives are written instructions that specify a person's preferences about end-of-life care. Typically an advance directive is used as an umbrella term for two types of legal documents: a living will and a medical (health care) power of attorney. A living will includes preferences for medical care and treatment at end of life. A medical power of attorney enables a person to appoint another as a “health care proxy” or “agent." A health care proxy takes over medical decision-making when an individual no longer able to do so, as determined by medical doctors.

Advance directives can be accessed from many sources including health care providers, legal offices, offices on aging, and the internet. It is important to note that state laws differ regarding advance directives, but forms are available online for a majority of states. For example, yesterday’s blog post referred to Five Wishes, which is an example of a living will or advance directive. Five Wishes meets legal requirements for 42 states. Free state-specific advance directives and related instructions are also available through the National Hospice and Palliative Care Organization (NHPCO).

An advance directive becomes a legal document once signed in front of required witnesses. Completing an advance directive protects patients’ rights and preferences relating to a quality end-of-life experience. While initiating discussion about end-of-life care can be difficult for everyone involved, it can prevent the burden of complicated decision-making on doctors, family, and friends. It may help to have a third party facilitate the discussion and preparation of an advance directive, such as a friend of the family, an attorney, or a health professional. Once an advance directive is completed, copies should be given to those that are involved with the individual's health care, such as doctors, the appointed health care proxy, and selected friends and family members.

For more information on advance directives, the following NHPCO article may be of help: What are Advance Directives?

Have you and your loved ones completed advance directives? Please share resources and tips below.

Blog reposted from November 2010

When families use hospice, the overwhelming majority find the experience comforting and find the services helpful, yet many do not get referred until far into their loved one’s disease. Statistics show that while hospice is intended for anyone in the last 6 months of life, most patients are on hospice less than 2 weeks. Our healthcare system is set up to treat us and make us well, with a focus on “curing” our illness. It seems there is a fairly abrupt shift when looking toward comfort care and symptom management. Families and patients both express worry over even saying the word, lest they look pessimistic or disloyal. Physicians may feel the same way or may be focused on new treatments coming down the line.

This is a tough topic for patients and families but an important one. So how do you know if you or your loved one should be thinking about hospice? 

There are patterns that people with brain cancer have near the end of life. It is hard to watch for, and caregivers have that ominous feeling that something is happening. Talking with the doctor or nurse helps to confirm the actions witnessed.

One of the earliest signs is when someone stops eating and drinking. The appetite seems to disappear. It is often subtle, and not really apparent until the person is weighed and the scale shows a decrease.

A person may have clinical symptoms such as an abrupt change in personality. Headaches may begin to develop because of the pressure in the head. Medication for headache pain is strongly encouraged to keep someone comfortable.

A person may become quite fatigued and want to stay in bed. Sleeping for more hours than being awake may happen.

Changes in breathing patterns are one of the final signs in the end of life. A long pause between breathes can occur. The periods of apnea is alarming at first, then easier to watch.

Hospice is an excellent resource for the end of life because the nurses and doctors are familiar with these symptoms. Having someone there to talk with about these changes and progression really helps.

 What experiences have you had with hospice?

Blog reposted from November 2010

The establishment of the Institute for Applied Cancer Science at The University of Texas MD Anderson Cancer Center was announced on November 28 by Ronald DePinho, MD, president of MD Anderson, other Institute leaders, Governor Rick Perry, and the Chairman of the U. Texas System Board of Regents, Gene Powell.

The Institute was established to combine the best of academic research and industry research and development to effectively move discoveries through the R&D process into human testing in clinical trials. Other leaders of the Institute have been drawn from industry and academics with experience in bridging both and in driving research through the R&D pipeline.

Giulio Draetta, MD, PhD is the Director, and Lynda Chin, MD, is the Scientific Director of the institute. Both were former leaders of the Belfer Institute for Applied Cancer Science at Dana-Farber Cancer Institute in Boston.

As Scientific Director at the Belfer, Chin drove the scientific foundation for collaborations with pharmaceutical companies (Merck and Sanofi-Aventis).  She is a leader of The Cancer Genome Atlas (TCGA) of NIH and chairs the TCGA glioblastoma working group as well as the melanoma group.  She is also an entrepreneur and founder of two biotechnology companies.  At MD Anderson She is also the Chair of the new Department of Genomic Medicine.

Prior to his work at the Belfer Institute, Dr. Draetta held leadership positions in pharmaceutical companies, Pharmacia and Merck as vice president and worldwide head of oncology drug discovery.  He also had a highly productive academic research career and is the founder of a biotechnology company focused on cancer therapies.

Both Dr. Draetta and Dr. Chin have been speakers at National Brain Tumor Society organized symposia, "Driving Research to Therapies" and "Stepping Up to the Complexity Challenge: The Systems Biology Era of Cancer Research", respectively.

Caregiving can be extremely rewarding, but also challenging. The cliché is that you must take care of yourself to care for others. However, realistically a caregiver plays various other roles besides being a full time caregiver, and these roles limit the amount of time one has for adequate self-care. Finding a balance is necessary and there are organizations out there to support caregivers. Please see those featured below.

- The Family Caregiver Alliance provides fantastic support for caregivers. Check out their website to search through their Family Care Navigator for local resources and support in your community. For tips on ways that caregivers can care for themselves, take a look at the National Cancer Institute's Caring for the Caregiver.

- The AARP Foundation's Prepare to Care provides A Planning Guide for Families where caregivers and patients can keep track of appointments, questions for their doctor, finances, and helpful resources found along the way. The information is geared more towards adult children caring for aging parents, but many of the checklists and action items can be adapted.

- For spousal caregivers, try Young Cancer Spouses or Well Spouse Association to find more information and support on how to best care for your partner.

Do you have any self-care tips for caregivers that have been helpful for you or your loved one? Please share them here.

Blog reposted from May 2011

If you, or a person you are caring for, is on Medicare then you should know that the prescription drug coverage – called Part D – has an open enrollment period that began on October 15 and runs through December 7.  It is important for enrollees to carefully review the options for coverage and make selections before the open enrollment period closes.  Review the Open Enrollment Center to get information or call 1.800.MEDICARE. Coverage begins on January 1, 2012.  Don’t wait to ask questions of Medicare about getting prescription coverage!