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.

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

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 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!

Once surgery and treatment have come to an end, patients may enter a new world of care called rehabilitation, or physical therapy. Here is a list of resources to help educate patients about the benefits of this important follow-up care.

A helpful place to get connected to information can be through your state Department of Rehabilitation. If you click on their resources tab, you can read more about employment assistance, assistive technology, benefits, disability organizations, and much more all within your state.

If you are looking to get connected to a physical therapist in your area, you can refer the American Physical Therapy Association’s directory to search for one within a certain mile radius of your home.

You can also try visiting The American Occupational Therapy Association, Inc. to learn more about occupational therapy and its benefits, through informative factsheets, podcasts, and resources.

Returning to work after a brain tumor can come as a daunting thought for many. The Job Accommodation Network, provided by the U.S. Department of Labor's Office of Disability Employment Policy, assists those with disabilities, families and employers with the appropriate job accommodations they may need before returning. Check it out!

If you have other questions, be sure to share them with your doctor.

Have you ever wondered what is new in the brain tumor world? Have you been curious about clinical trials, how to choose a trial, or how to enroll?  If so, these resources are for you!

NBTS recently launched a Clinical Trial Matching Service (877 769 4812) that provides a way to connect patients to appropriate clinical trial options. The service compares the patient’s situation to a database of trials and searches the trials’ eligibility criteria for a match.

Try downloading the NBTS Clinical Trial Overview and How to Find and Access Clinical Trials factsheets to get you started with the basics about clinical trials.  You can also review our Clinical Trials FAQ for even more information.

In addition to the NBTS Clinical Trial Matching Services, there are a couple other resources that can be helpful for finding trials. People can look for clinical trials specific to the patient’s age, tumor type, and prior treatment to identify trials the patient may be eligible for. Here are a couple of options:

The National Cancer Institute also has a clinical trial database with a variety of search features, including location, treatment type, and trial phase.

You can also try ClinicalTrials.gov.  The “Basic Search” option is quite straightforward for a general listing, whereas the “Advanced Search” option gives users more power to customize their search.

Finally, check out VirtualTrials.com for listings of new trials and an email newsletter highlighting the latest in brain tumor research findings.

National Brain Tumor Society

Connecting with others is an important way to find information, support, and hope. This resource list includes information to help you and/or your loved one find the support you need to stay strong.

Adults

CancerCare
800 813 4673
Offers free counseling from compassionate, professional, oncology social workers, both over the phone and face-to-face (New York, Long Island, Connecticut and New Jersey).

American Psychosocial Oncology Society
866 276 7443 (Helpline) (phone)
The American Psychosocial Oncology Society (APOS) was established for cancer patients and their caregivers to locate local referrals for counseling and support services. The APOS Helpline is a referral program connecting patients or patient advocacy organizations to psychiatrists, psychologists, nurses, and social workers skilled in the management of cancer-related distress.

Young Adults

I'm Too Young For This! Cancer Foundation
Provides age-appropriate support to young adults with cancer through the use of social networking events, advocacy, peer counseling, scholarships, happy hours and much, much more!

Pediatric

SuperSibs!
866 444 SIBS (7427)
Provides support services and resources for siblings (between ages of 4 – 18) of children with cancer and their family members.

1-1 Peer Support

Imerman Angels
877 274 5529
Imerman Angels 1-on-1 Cancer Support carefully partners anyone seeking cancer support with someone similar - the same age, same gender, with the same type of cancer.

Also read the NBTS Find Support page for more information.

What are some of your go-to support services?

National Brain Tumor Society
 

The list below highlights some of the resources that are available for childhood pediatric brain tumor patients and their family members.

For Brain Tumor-Specific Information, Support and Education:

Children's Brain Tumor Foundation
www.cbtf.org
866 228 4673
Offers information and support to patients and families of children with brain and spinal tumors. They have a wonderful free publication called "A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors."

Pediatric Brain Tumor Foundation
www.pbtfus.org
800 253 6530

For Financial Assistance:

First Hand Foundation
www.firsthandfoundation.org
816 201 1569
Assists individual children who was health related needs and no financial resources to cover these expenses.

National Children's Cancer Society
www.nationalchildrenscancersociety.org
314 241 1600
Provides financial assistance and in-kind assistance to children with cancer.

United Healthcare Children's Foundation
www.uhccf.org
952 992 4459
Offers financial assistance to cover medical services beyond what insurance will cover or if services is not covered by the policy at all. Generally assistance must be requested before services are obtained and funds will generally be paid directly to the facility. Grants up to $5,000 per year, with a lifetime cap of $7,500.

Foundation for Children with Cancer
www.childrenwithcancer.org
314 843 9300
Family must be referred by a healthcare professional and payments go directly to the vendor. There is currently a $500 limit per family.

Mission4Maureen
http://mission4maureen.org
Dedicated to providing financial assistance to families who are burdened with the staggering cost of brain cancer treatment. Financial aid is available for medical bills as well as child care, housing payments, utility bills, transportation, medication, and other areas of assistance. An application with supporting documentation is required.

American Cancer Society
www.cancer.org
800 227 2345
Has a Gas Card program and a Road to Recovery Program. In some local offices, the Road to Recovery Program connects patients/families to volunteers who are willing to drive the family to and from treatment.

For additional pediatric brain tumor resources, check out our online Resource Directory.

Are there others that you have found helpful? Please share.

National Brain Tumor Society

Image: LeMaze Studio

Here is a list of resources for managing financial concerns and getting assistance with a variety of treatment-related and other expenses:

CancerCare (800 813 4673) provides free support services with licensed social workers. The staff can help callers locate resources and get connected with services they need. CancerCare also provides limited financial assistance for certain diagnoses.

Patient Advocate Foundation (800 532 5274) has a general phone line staffed by case managers who can answer insurance questions and help patients locate financial resources.

American Cancer Society (800 227 2345) offers a searchable resource directory and limited financial assistance. Gas cards or transportation services are available in certain areas.

Needymeds maintains a website to help people identify patient assistance programs for generic or brand name drug costs. This is designed primarily for patients who have little to no insurance.

2-1-1 is a service offered by the United Way. Dial 2-1-1 on a local telephone to reach a referral search operator in your area. They can help locate local resources that may assist with living expenses, such as rent or utility payments.

Families USA: Your Medical Bills: A Consumer’s Guide to Coping with Medical Debt is a brochure designed for families who are in search of health care coverage or who face medical debt and are looking for ways to manage it.

What financial and insurance-related resources have you found to be helpful? Let us know what you think! Also, check out the NBTS Financial and Insurance Resources page for additional listings.

National Brain Tumor Society

This week our team will be highlighting some of our go-to resources for brain tumor patients and their family members.

Here's what's lined up for the week:

• Tuesday: Financial and Insurance Resources
• Wednesday: Pediatric Brain Tumors
• Thursday: Support Services
• Friday: Clinical Trials

We hope this week will be "resourceful" for you and your loved ones!

To kick off the week, check out our resource directory listing of Brain Tumor and Brain Tumor-Related Organizations.

Please also chime in on what resources and support services have been most helpful to you throughout your experience by leaving a comment!

National Brain Tumor Society

Being a long distance caregiver can be very challenging for both the caregiver and the loved one. Here are some helpful resources to help long distance caregivers assist their loved ones from afar.

The National Institutes of Health provides information on what it means to be a long distance caregiver, and the things they can be doing for their loved one.

Check out the Family Caregiver Alliance’s Handbook for Long Distance Caregivers to learn more!

What helpful tips can you share with the community about your long distance caregiving experience?

Patient Services Team

How we choose to care for and fuel our bodies is important and can have a large effect on how we feel from day to day.

For healthy recipes: A simple way to begin making small changes to the way you eat. If you are looking for creative, yet simple meals that are sure to give yourself or your loved one the proper nutrients and energy needed to start feeling better through treatment, check out the American Cancer Society's cookbook, What to Eat During Cancer Treatment. It includes 100 recipes!

How to plan your diet during treatment: Visit Chemocare.com to read more about their Cancer Diet and what a good diet consists of for a patient who is undergoing chemotherapy.

How eating right can you help you: Click here to visit The Cancer Project to read about the personal accounts of those who feel nutrition has played a significant role in the improvement of their quality of life during treatment.

Has your diet helped changed the way you feel? Please share with us!

Patient Services Team

For many brain tumor patients, headaches are a disruptive and painful symptom that can become a part of daily life. Below are resources that can help you manage these symptoms, so that you are better able to continue with the things you want to do!

The American Headache Society: provides information and tools that can help you monitor and manage your headaches. AHS has adult and pediatric specific resources. These include headaches diaries, trigger avoidance information, and instructions for school nurses! Information and resources are also available in Spanish.

National Headache Foundation: has valuable information, blogs, and a story corner to feature your personal experiences with headaches.

American Pain Foundation: has a wonderful online community called, PainAid, to help you find support when managing your symptoms. Discussion forums and live chats cover several topics including illness-specific pain, complementary therapies and financial issues.

How have you managed your headaches? Feel free to share your experiences and resources that have been helpful along your journey!

Patient Services Team

Reposted from 12/16/2010
Image: everyjoe.com

As a coping tool, humor can certainly be helpful when facing a difficult diagnosis; however, some find just the opposite. As noted by author David Rakoff in his book, "Half Empty", sometimes a short sulk-session is necessary when coping with an illness or chronic disease.

Here is a fun Daily Show interview from this past October with Rakoff and in this clip, he challenges the belief that pessimism is still alive and that it should be embraced. David is in his 40's and had lymphoma when he was 22 years old. While writing this book, he was diagnosed with cancer in his neck. I hope it helps you smile today!

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
David Rakoff
www.thedailyshow.com
Daily Show Full Episodes Political Humor & Satire Blog</a> The Daily Show on Facebook

 

Lauren Rettberg, MPH
Health Information Specialist, Patient Services

View the disclaimer in the My.BrainTumorCommunity.org User Agreement.
Blog reposted from 2/2/2011
 

Hair loss or thinning of hair may be a result of radiation or chemotherapy treatments. The list below includes a variety of resources available to help you or your family member manage hair loss.

Education and Information:

CancerCare has a great online educational fact sheet called Tips for Managing Hair Loss. It includes common questions and answers about hair loss due to cancer treatments, tips for obtaining a wig, and support services.

Assistance with Wigs or Hats:

Look Good…Feel Better program from the American Cancer Society offers men and women with information on group workshops, one-on-one salon consultations and self help materials (available in English and Spanish). For more information, call 800.395.5665.

American Cancer Society's Tender Loving Care (TLC) online catalog is another helpful resource. TLC's mission is to help women cope during and after cancer treatments by providing wigs and other hair loss products.

Locks of Love provides hairpieces to financially disadvantaged children, in the United States and Canada and under the age of 21, suffering from long-term medical hair loss from any diagnosis.

ConnieCaps, Inc also offers free stylish, hand-crafted hats to cancer patients. For more information, call 541.946.3382

Have you experienced hair loss due to brain tumor treatments? If so, what resources or services were most helpful for you?

Lauren Rettberg, MPH
Health Information Specialist, Patient Services