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!

This week we're winding down November and also National Family Caregiver Month, so we’ll be discussing the role of a caregiver and providing information and resources on the topic.

We hear stories from caregivers from all over the country. If you are a caregiver, we understand that while each of your loved ones face a different set of challenges, your stories share a common thread. Maybe this sort of question sounds familiar: 

Question:
I’m a caregiver for my daughter. I spend so much time taking care of her (and everything else around the house!) that I rarely have time for myself. I’m starting to burnout, and I don’t know what to do. Do you have any suggestions?

Answer:
I bet, like many caregivers, you've heard it a hundred times: “Be sure to take care of yourself” ... and when you hear it, you think, “Yeah, okay -- easier said than done!”

You are now in the role of a “caregiver” for your loved one, but it’s important to remember who you are first: a spouse, parent, sibling, son, daughter…YOU. It’s incredibly difficult when caring for a brain tumor patient to juggle work, family, billing offices, medical appointments, personal obligations – let alone take some time for yourself.

Research has shown that people who care for others have a much higher risk of developing significant health problems. So, how can you try to take care of yourself while taking care of a loved one?

1. Exercise is often mentioned as important to self-care. But if you didn’t have time to make it to the gym before the "new normal” of life after the tumor, it may seem daunting to make time for it now. Here’s a secret: you don’t have to go to the gym! A 10-minute walk around the block will not only allow you to get some fresh air, it will help give your brain and your senses a break. The change of scenery will also help lower stress and anxiety.

2. The frequent medical appointments for your loved one may get in the way of your own medical check ups. When was the last time you saw your doctor? If you can’t remember, it’s time to make an appointment for a check up!

3. Think back prior to your loved one’s diagnosis - what did you enjoy that you miss doing now? Is there a way to still incorporate your interests? Re-engaging in old hobbies or going on outings with friends can make a world of difference -- not just for you, but also for how you treat and care for your loved one. You may not be able to continue going on week-long vacations, but how about a cup of coffee or a quick trip over to a friend’s house?

4. One of the biggest roadblocks for caregivers is the hesitation to ask for help. There’s something about us humans that makes us think we have to do it all. If you want to be an effective caregiver, recognizing the need for help is important. Having an army of people will help you and your family make it through this physically, emotionally, and hopefully with some laughs along the way.

To learn more about caring for YOURself, keep an eye out for resources tomorrow.

Have a helpful tip for other caregivers out there? Leave a comment and let us know!

Blog reposted from May 2011

Santosh Kesari, MD, PhD, is the co-corresponding author of a paper on targeting a newly identified mutation associated with glioblastoma with two drugs that have been used previously in human clinical trials and not been found effective. However, tumors containing this new type of mutation may respond to these drugs and the authors are working on getting a clinical trial approved using these drugs specifically in patients with this particular mutation.

Dr. Kesari recently received a Mary Catherine Calisto Systems Biology Initiative grant from the National Brain Tumor Society for similar work. He will be looking to analyze tumor samples to find a way to predict which cancer drugs should be used for a particular person. By doing this, Dr. Santosh and his team hope to overcome a tumor’s ability to adapt and survive.

Read the full article.

A team of us from the National Brain Tumor Society (NBTS) are currently at the 16th Annual Scientific meeting of the Society of Neuro-Oncology (SNO) that goes on over the next several days. Yesterday was the Education Day and our own Mary Lovely moderated the quality of life sessions. We are excited to hear the presentations and discussions going forward on the latest results in brain tumor research and continue to connect with key people in the field.

NBTS sponsored the clinical trials course during the Education Day's afternoon session. The room was jam packed with researchers learning about the trial process and strategizing about ways to accelerate the process. 

As part of being a sponsor for SNO, Paul TonThat, Executive Director of NBTS, also presented Dr. Mark Gilbert of MD Anderson the Award for Excellence in Clinical Research for his top-scoring abstract, "RTOG 0525: A randomized phase III trial comparing standard adjuvant temozolomide (TMZ) with a dose-dense (dd) schedule in newly diagnosed glioblastoma (GBM)." Congratulations Dr. Gilbert!

With over 120 different types of brain tumors, finding quick and accurate information that match your particular needs can prove challenging. This list of reliable resources can help you stay up-to-date on the latest brain tumor research and clinical trials.

How to Find and Access Clinical Trials is a helpful fact sheet that provides step-by-step instructions for identifying a clinical trial and gathering the information needed to participate.

NBTS Clinical Trials Matching Service through EmergingMed can help you stay on top of all of your treatment options. Get free and confidential help with a clinical trial navigator. To get started, call 877.769.4812, Monday through Friday 8:30 AM - 6:30 PM EST.

National Cancer Institute has a comprehensive list of clinical trials that are newly accepting participants. Also, browse the Clinical Trials Results section to read about results from recent research studies on brain cancer.

Clinicaltrials.gov is a service of the U.S. National Institutes of Health and is a registry of federally and privately funded clinical trials offered in the U.S. and internationally.

Curesearch.org offers clinical trial information for pediatric cancer as well as support and educational resources. It is provided by the Children’s Oncology Group and the National Childhood Cancer Foundation.

Musella Foundation for Brain Tumor Research and Information offers listings of brain tumor clinical trials as well as a free Brain Tumor Daily News Blast.

These are just some of the many great resources that can help you navigate the research world. Have you used these services and resources? If so, post a comment!

Blog reposted from January 5, 2011

(Today's blog comes from the Executive Director of the National Brain Tumor Society, N. Paul TonThat.)

I have been pondering what to share with you all on my first blog. Do I tell you all some of what we are working on? Perhaps why we think that systems biology and other integrative cancer approaches are so promising and yet needs maturity and further investment.

Then I met Bailey last Sunday in Philadelphia. Her father handed me a check for $100 and Bailey explained what it is for. I asked her to send me what she told me in her own words because I would not be able to do her justice. She captures both the hope all of us feel as we fund promising brain tumor research and the fear we all feel that the disease is winning. I know that it is not winning as long as we all continue to fight.  We do however need to more quickly translate what could be in the lab and clinic to what should be in the patient rooms.

Letter from Bailey:

My name is Bailey Waskiewicz and I am 10 years old. I live in Bensalem, Pa., and I am in 5th grade at Our Lady of Grace school. When I was 8 I found out that my mom had a brain tumor in 1998 and had surgery to get it out. I was so sad for my mom, I decided I wanted to donate money to brain tumor research. I started saving most of my money that I got for birthdays and Christmas. I told my mom I was saving it for brain tumor research, but I think she thought I might want to go spend it. In October 2010, my mom was diagnosed with a new brain tumor. I am very scared for her and I hope she is going to be ok. On Sunday morning before we left for the brain tumor walk, I brought all my money to the kitchen and dumped it on the table and told my mom and dad I wanted to bring it with me to donate. My mom was so happy and she cried, and she couldn't believe I had saved $100 and wanted to donate it. I hope I can save up a lot more to donate next year and I hope there is a cure for everyone soon.  

From,
Bailey

Today at the Patient and Family Program portion of the 2011 NBTS Summit, those who are attending will have the opportunity to visit the Resource Center to learn more about local and national groups that provide information and support to those affected by brain tumors. But we want to be sure that those of you who can’t join us in at the Summit also know about these great resources. So, in no particular order…

NBTS Clinical Trials Matching Service by EmergingMed
www.EmergingMed.com/networks/NBTS
877.469.4812
EmergingMed offers a patented clinical trial matching service that helps people, in a matter of minutes, find appropriate clinical trials and trial sites that match their specific diagnosis, stage, symptoms, and treatment history.

Epilepsy Foundation of America
www.EpilepsyFoundation.org
The Epilepsy Foundation of America is a national voluntary agency working to ensure that people with seizers are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted, and valued in society; and to promote research for a cure.

CaringBridge
www.CaringBridge.org
CaringBridge offers an easy-to-use web-based service that allows people to communicate easily with family and friends about a significant health challenge.

Cancer Legal Resource Center
www.CancerLegalResourceCenter.org
866.843.2572
The Cancer Legal Resource Center provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

CancerCare
www.CancerCare.org
800.813.4673
CancerCare helps individuals and families better cope with and manage the emotional and practical challenges arising from cancer.

Visiting Nurse Service of Philadelphia
www.vnaphilly.org
215.473.7600
The VNA of Greater Philadelphia is the oldest and largest non-profit home health and hospice provider in the region, and one of the most innovative in the nation.

Cancer Support Community of Philadelphia
www.CancerSupport-phila.org
215.879.7733
The Cancer Support Community of Philadelphia is a non-profit organization serving people with cancer and their loved ones of all ages and ethnicities throughout the five-county area.

Patient Advocate Foundation
www.PatientAdvocate.org
800.532.5274
The mission of the Patient Advocate Foundation is to provide effective mediation and arbitration services to patients to remove obstacles to healthcare.

Family Caregiver Alliance
www.caregiver.org
800.445.8106
Family Caregiver Alliance serves as a point of entry to specialized caregiver services: information, emotional support, consultation on care planning, links to community programs, legal/financial consultation, respite services, counseling, publications, and educational programs.

Looking for even more resources? Check out the Resource Directory on our website!

“We are all in this together,” said Daniel Gallahan, PhD, Deputy Director of the Division of Cancer Biology, National Cancer Institute, at this afternoon’s systems biology panel discussion. “If we understand fundamental changes [that lead to progress] in one disease, we can extrapolate to other diseases.” Afterward, there was a robust discussion among government, industry, and others in the brain tumor community about the challenges and complexity of moving systems biology research forward quickly so that the research can be translated into better therapies.

N. Paul TonThat, Executive Director of the National Brain Tumor Society, passionately described both the frustration and the challenges involved in calling on the scientific community to refocus their efforts and accelerate development of new treatments for brain tumors.



To close the afternoon, Michael Berens, PhD, Professor and Director of the Cancer and Cell Biology Division of TGen, eloquently reminded the community that we are all trying to do something that no one else has done. Although there will be unavoidable challenges along the way, this effort promises to have a huge impact.



It was a great day filled with tons of information! And we're only on day 2!  Looking forward to the Patient and Family Reception and the Patient and Family Program tomorrow.

Systems biology: It sounds like a required course you'd sleep through in college...but it's the new cool stuff in brain tumor research. Today the National Brain Tumor Society (NBTS) is bringing cancer all-stars together to discuss the critical role of systems biology research at the Research Symposium. NBTS believes that a systems biology approach to brain tumor research will enable researchers to identify new therapies aimed at shutting down the systems that drive tumor growth.

By bringing together the disciplines of molecular biology, genomics, physics, mathematics, and engineering, systems biology provides scientists with the ability to understand the complexity of cancer, and the data necessary to use to disrupt and destroy cancer.

Systems biology is particularly appropriate for brain tumor research for two reasons.

First, brain tumors are highly complex biological systems. The interconnecting pathways within brain tumor cells, the diversity of cells within a tumor, and the interactions of tumor cells with their environment allow them to adapt to some treatments. Combination therapies, focused on more than a single target, will be required to effectively treat aggressive brain tumors, such as glioblastoma.

A systems biology approach is needed to make sense of the complexity, diversity, and adaptability of tumors.

Second, systems biology research is needed to enable the rapid analysis of data, which will help scientists predict which combinations of therapies will shut down pathways that sustain tumor growth. Mathematical modeling and simulations provide valuable insights into the many factors that impact the tumor system. Data analysis provides critical information about how cells are allowed to maintain the growth of tumors, despite interventions. A systems biology approach is needed to make sense of these complexities and to ultimately predict how tumors will respond to potential new therapies, and to determine which combination of therapies will best stop tumor growth.

Check out our website to learn more about systems biology and check back after November 4 as we'll have videos and more information.

The National Brain Tumor Society (NBTS) has kicked its pursuit of new treatments for brain cancer into “overdrive,” according to Rabbi Eric B. Wisnia, of the Congregation Beth Chaim in Princeton, New Jersey and emcee at NBTS’s Annual Meeting tonight. “I am convinced that together we will find a cure.”

Much of the buzz at the meeting was around the Mary Catherine Calisto Systems Biology Initiative as the grant recipients were announced. Six of the nation’s leading brain tumor researchers received the Initiative’s first round of grants to develop a specific plan for research aimed at developing new treatments for brain tumors [glioblastomas].

Although it might sound like the name of a college course, systems biology is actually a promising new approach to research that NBTS and many other major health organizations believe is needed to speed the development of new, more effective treatments for brain tumors.

Today, we are truly living in an “unprecedented time," said speaker Wai-Kwan Alfred Yung,  MD, Chairman and Professor of Neurology and the Margaret & Ben Love Chair in Clinical Cancer in the Department of Neuro-Oncology at The University of Texas MD Anderson Cancer Center in Houston.  We have data and "a level of insight [about brain cancer] that we could have only dreamed of 10 or 20 years ago."

NBTS is “truly visionary“ in its aggressive pursuit of a cure for brain cancer, Dr. Yung added. “We are embarking today on a serious multi-year engagement that will bring together the very best of academia, research, and industry with one and only one mission – to find a cure first for high-grade gliomas, then other brain cancers. We will need to break the current research funding paradigm. We will need to break the usual barriers between institutions and industries.”

Dr. Yung, who was recently appointed to Chair of the new NBTS Strategic Advisory Committee and who is a 13-year survivor of bladder cancer,  closed on a passionate note:

Together, “we have one and only one mission: to find a cure to glioblastoma and other cancers. I want to eliminate cancer from this earth.”

Next up: scientists fill us in on systems biology at tomorrow morning’s scientific symposium. Rise and shine….

It’s here! Tonight kicks off the National Brain Tumor Society 2011 Summit! After much planning, we could not be more excited to bring you an event where you can learn the latest about brain tumor research, share resources, connect with new people, celebrate accomplishments, and take action to make your voices heard. 

The Summit gets started tonight with the NBTS Annual meeting, where attendees will hear about the promise of systems biology and meet our research grant recipients. We’re also excited to present three Community Leadership Awards, to people who are making a difference through their commitment to the cause.

On Friday, scientific, government, and patient leaders are gathering for the NBTS Research Symposium, “Stepping Up to the Complexity Challenge: The Systems Biology Era of Cancer Research.” Experts in the field will discuss integrated cancer research, including systems biology, and how this method will advance the search for new therapies in new, bold ways. After the Symposium, the Patient and Family Welcome Reception will start at 6pm with a fun and informal gathering with fellow people in the brain tumor community (including lots of special guests!).

The Reception is just a warm-up for the Patient and Family Program on Saturday, where patients and families can listen to fantastic speakers, join focused discussion groups, get one-on-one information and helpful resources from local and national groups, and connect with NBTS. This conference is a great way to not only gain a ton of new knowledge, but also really connect (in person!) with others in the brain tumor community.

Hard to believe that there’s more but we will close the Summit weekend with the Race for Hope–Philadelphia, which starts from the steps of the Philadelphia Art Museum. You can still register the morning of the event, so if you haven’t already registered, we hope you will join the thousands of people who have already raised over $600,000 for brain tumor research.

How’s that for a jam-packed four days?! Keep an eye on this blog throughout the weekend for lots more updates from the Summit. We’ll be posting updates on Facebook and Twitter too. If you are joining us for the Summit and tweeting about it, please use #NBTSSummit11 so other people can see what you are saying about the event!

Happy Summiting!