Category Archives: Cancer Centers/Cancer Nonprofits

Loss of Muscle & Weight from Lung Cancer

lung-cancer-cachexia

This resource is brought to you in partnership with Helsinn and Lung Cancer Alliance.

If you have lost weight and/or muscle, you may have been told that you are at risk for or have developed cachexia.

What is Cachexia?

Cachexia is uncontrolled and unwanted loss of weight and muscle. It is seen in some serious illnesses, including lung cancer. Over half the people diagnosed with advanced lung cancer have cachexia.

What are the impacts of Cachexia?

  • How well you handle side effects of chemotherapy and other treatments
  • Whether you can complete your cancer treatment or not
  • How you feel, your overall well-being
  • Your ability to stay independent and do the things that are important to you
  • How long you may live

What can I do?

Cachexia and its symptoms can be treated and may be prevented. Continuing your cancer treatment is important because cachexia tends to improve along with your tumor response.

  • Nutritional assessment or consultation by a registered dietician.
  • Stay as physically active as possible.
  • Treat depression.
  • Control lung cancer symptoms and treatment side effects.

Learn more about cachexia, what it is, and what you can do about it in this free PDF.

 

Finding Hope through a Clinical Trial

Clinical Trials

 

 

 

 

 

 

 

This is a guest blog post from the Cancer Support Community.

Elisa was in her early 30s when she was diagnosed with breast cancer. In the eight years since then she has been through surgery, radiation and six different chemotherapies. Early this year, she learned her cancer was progressing, and she was running out of options. Elisa lives in Chile. A friend, who is a cancer specialist, told her about an immunotherapy trial in Chicago for which she might be a candidate. Elisa and her mother made the long journey from South America to Illinois to be part of this innovative study. Right now, she is doing well. While the future may remain uncertain, being part of this trial has given her hope.

Bill is a successful lawyer, a husband and father. Twelve years ago, he was diagnosed and treated for a rare brain tumor. He went on with his life, until the tumor returned in October. Standard therapy offered little chance for a good or lasting response. His doctors in Chicago suggested that he go to New York for a clinical trial with a new targeted therapy. Now, he still practices law, takes care of his family and travels every few weeks for his innovative therapy.

What can we learn from these two stories?

First, by joining a clinical trial, both Elisa and Bill were treated with new therapies that would otherwise not have been available to them. Like many people with advanced or difficult to treat tumors, they knew that their best option was to consider joining a clinical trial. That put them at the forefront of cancer research. Both knew when they made the decision to leave their homes and travel to another cancer center that there was no guarantee that they would respond to the treatment. They made conscious choices to be a part of something that might make a difference for them, and for other people facing similar cancers.

It takes courage and belief to join a clinical trial.  Many cancer patients bring those characteristics to their experience. From the moment a person hears the diagnosis of cancer, he or she enters a strange new world.  This new world requires making decisions about treatment and care. For many, that may include the opportunity to join a clinical trial, yet another unknown territory. The hope that new treatments bring is a beacon of light in that world.

Elisa and Bill represent the people facing cancer who actively seek information about the treatments available for their cancer, who work as partners with their doctors and health care teams to make the best decisions about their care. They both made choices that involved dislocation, uncertainty and loss. They made these choices because the clinical trial represented something more important. They chose hope–hope for longer, better lives.  They chose hope for the future, for themselves, the people who love them and everyone who ever faces cancer. Hope is what inspires courage and belief. Hope drives clinical trials.

To learn more about Clinical Trials, check out the Cancer Support Community’s new Frankly Speaking about Cancer Clinical Trials program at www.CancerSupportCommunity.org/ClinicalTrials.

5 Cancer Prevention Tips

This content is originally from the Prevent Cancer Foundation .

More than 1.6 million Americans will be diagnosed with cancer this year and more than 589,000 will die. However, research shows that up to 50 percent of cancer cases and deaths are preventable.

In February, we honor National Cancer Prevention Month. Here are steps to prevent cancer from the Prevent Cancer Foundation:

  1. Don’t Use Tobacco. The use of tobacco products has been linked to many types of cancer, including lung, colorectal, breast, throat, cervical, bladder, mouth and esophageal. It’s never too late to quit. About 90 percent of all lung cancer is related to smoking. Non-smokers who are exposed to secondhand smoke are also at risk for lung cancer and other respiratory conditions.
  2. Protect your skin from the sun. Skin cancer is the most common and most preventable cancer in the United States. More than 3.5 million skin cancers in over two million people are diagnosed annually. Exposure to the sun’s ultraviolet radiation causes most skin cancer. Be sure to use adequate sun protection year-round. Never use indoor tanning beds.
  3. Eat a healthy diet. Eat lots of fruits, vegetables, beans and whole grains. Limit red meat and cut out processed meats. It is also important to limit alcohol consumption because alcohol can increase your risk for liver, colorectal and breast cancers. If you drink alcohol, have no more than two drinks a day if you are a man or one drink a day if you are a woman.
  4. Maintain a healthy weight and be physically active. Getting at least 30 minutes of physical activity each day can make a big difference in your general health and well-being. Inactivity and obesity have been linked to breast and colorectal cancer, and there is also some evidence of a link to lung and pancreatic cancer. Add exercise to your routine to reduce stress, increase energy, boost your immune system, control your weight and reduce your risk for cancer.
  5. Know your family medical history and get regular cancer screenings. Talk to your health care professional about cancer screening. Some tests can help detect cancer early, when treatment is more likely to be successful, and some can also detect precancerous conditions before they become cancer. While screening has been proven to save lives, screening guidelines aren’t always “one size fits all.”

To see more cancer prevention tips from the Prevent Cancer Foundation, click here.

cancer-prevention

About Prevent Cancer Foundation: 
The mission of the Prevent Cancer Foundation is saving lives through cancer prevention and early detection. Their vision is to Stop Cancer Before It Starts! The Prevent Cancer Foundation advocates and supports the prevention and early detection of cancer through Research, Education, Advocacy and Community Outreach. To learn more, visit

Wellist’s Story

This is a guest blog post by Wellist, an online directory of 3,500+ (and growing) services in Boston.

The moment you or a loved one hears the news, time stops. No matter who you are, getting sick was not part of the plan. We know that with any kind of diagnosis, life can become more complicated. There are the obvious lifestyle complications, like appointments to get to, prescriptions to be filled, and symptoms to be monitored–the things that make up the “medical” part of a diagnosis.

But then there is the impact that being sick and dealing with a diagnosis has on one’s life. Tasks that once were easy, like picking up around the house, cooking a family dinner, or shoveling the steps after another snowy winter, suddenly are overwhelming. The to-do list can pile up, leaving patients and their families feeling flat out exhausted.

Every day, we see people shoulder this incredible burden without enough support. And we also know that person has their own journey, and their own unique needs. This is the reason Wellist, an online directory of 3,500+ (and growing) services in the Boston, exists. We also understand that in times of challenge, finances can be tight. Wellist is completely free to use thanks to our partners, Massachusetts General Hospital Cancer Center, Beth Israel Deaconess Medical Center and Quest Diagnostics.

We help young mothers who have just been diagnosed with an aggressive form of cancer find someone to watch their kids after school. We’ve helped men living alone to find someone to mow the lawn, and we’ve helped daughters who no longer live with their parents to make sure Mom and Dad are eating properly and that the house is kept clean. No matter what your story is, we have solutions to help.

We have spent months working with nurses, clinicians, and social workers from top healthcare providers, as well as patients and families, to create a directory of services to help those who are battling and recovering from illness. We provide recommendations and our users choose what’s helpful to them, whether it’s a financial assistance program to help with bills, or oncology-specific massages. With Wellist, users can set preferences for price range or location, and can then save those to their profile.

In addition to providing this directory, Wellist helps patients and their families find the support they need from people who care about them and want to help in a meaningful way. “I don’t want to ask my friends to clean my house but it’s what I really need,” is a phrase we hear over and over again. Friends and family want to help, but usually don’t know quite what to do. Wellist’s Wellistry, a shareable gift registry, allows patients to make a list of what services would be most helpful and a family member or that patient can share it with others who want to help.

Wellist’s team is deeply dedicated to the mission to make life easier for those undergoing health challenges. Every team member has come from a place where they have experienced the need for Wellist in their own lives. While our services primarily cover the greater Boston area, we are looking forward to partnering with even more healthcare providers, growing our team, and expanding our service range so that we are able to help as many as we can.

wellist-we'd love to help

10 Tips for Caregivers

This is a guest blog post by the Cancer Support Community.

A cancer diagnosis can impact your whole world. But what happens when you are also a big part of someone else’s world? Cancer impacts not just the person diagnosed, but their whole network of friends, family members and loved ones can feel the effects as well. This is especially true for the person acting as caregiver. Caregivers to someone with cancer spend an average of 8 hours per day providing care to their loved one. The demands of caregiving depend on several different variables–stage of disease, types of symptoms experienced, functional ability, treatment side effects and more. A caregiver’s response to the cancer diagnosis, treatment and journey itself can be just as important as how the patient responds–making the need for physical, social and emotional support for caregivers extremely important. In honor of National Family Caregiver Awareness Month, here are our top ten tips for caregivers.

  1. Find YOUR support system. When a friend or loved one is diagnosed with cancer, it’s an emotional time. Sometimes it can be difficult to talk with your loved one about your feelings, because you both have so much going on. Many find one of the best ways to cope with stress, uncertainty, and loneliness is to talk to others who share similar experiences. To find your own support system, look to our Affiliate Network or our online support group services.
  2. Gather information. There is truth to the phrase, “Knowledge is power.” There’s no way to completely grasp the ups and downs of a cancer diagnosis and treatment – and you shouldn’t be expected to. Being armed with knowledge may help you accommodate your loved one’s needs and help you know what to expect. To learn more about your loved one’s cancer diagnosis, click here.
  3. Recognize a “new normal.” Patients and caregivers alike report feeling a loss of control after a cancer diagnosis. Many caregivers are asked for advice about medical decisions or managing family finances and/or need to take on new day-to-day chores. It is likely that your tasks as a caregiver will create new routines – after all, you’re taking on a new role in your loved one’s life as well as your own.Maintaining a balance between your loved one’s disease and the daily activities of your own life can be a challenge. It may be helpful to identify the parts of your life that you can still control – such as your own health and relationships. In doing this, you will be able to create a strategy for integrating new routines with old ones. It may also help to acknowledge that your home life, finances, and friendships may change for a period of time. Sometimes the laundry might not get done, or maybe takeout will replace home cooking. Try to manage each day’s priority as it comes. Take a deep breath and realize that the support you provide is priceless.
  4. Relax your mind, recharge your body. It can be easy to feel overwhelmed by the tasks of caregiving. Mini-breaks are an easy way to replenish your energy and lower your stress. Try simple activities like taking a walk around the block or closing your eyes for 10 minutes in a comfortable chair. You are working hard to provide and secure the best care for your loved one. Time spent recharging your mind and body will allow you to avoid depression, major illness or burnout.
  5. Take Comfort in Others. It’s common for many caregivers to feel a loss of personal time over the course of their loved one’s illness. Keep in mind that while you are taking on new and additional responsibilities, you are still allowed a life of your own. Many seasoned caregivers advise that you continue to be involved with your circle of friends and family.
  6. Plan for the Future. A common feeling among caregivers and people with cancer is uncertainty. It’s hard to know what the future holds. While planning may be difficult, it can help. Try to schedule fun activities on days when your loved one is not feeling the side effects of treatment. You can also give yourselves something to look forward to by planning together how you will celebrate the end of treatment, or a portion of treatment.Planning for a future in the long-term is also important. All of us, whether we have been diagnosed with cancer or not, should have in place necessary paperwork such as healthcare agent, power of attorney and a will. You can ask your loved one if he or she needs, or wants, assistance. Having essential paperwork under control will allow you to have peace of mind.
  7. Accept a Helping Hand. It’s okay to have “helpers.” In fact, you may find that learning to let go and to say “YES!” will ease your anxiety and lift your spirits. People often want to chip in, but aren’t quite sure what type of assistance you need. It’s helpful to keep a list of all caregiving tasks, both small and large. That way, when someone asks “Is there anything I can do?” you are able to offer them specific choices.
  8. Be Mindful of YOUR Health. In order to be strong for your loved one, you need to take care of yourself. It’s easy to lose sight of your own health when you’re focused on your loved one. But if your own health is in jeopardy, who will take care of your loved one? Be sure to tend to any physical ailments of your own that arise, – this includes scheduling regular checkups and screenings. And just like your mother told you: eat well and get enough sleep.
  9. Consider Exploring Stress-Management Techniques. Even if you’ve never practiced mind-body exercises before, you may find that meditation, yoga, listening to music or simply breathing deeply will relieve your stress. Mind-body (or stress-reduction) interventions use a variety of techniques to help you relax mentally and physically. Examples include meditation, guided imagery and healing therapies that tap your creative outlets such as art, music or dance. If this interests you, seek out guidance or instruction to help you become your own “expert” on entering into a peaceful, rejuvenated state.
  10. Do What You Can, Admit What You Can’t. No one can do everything. It’s okay to acknowledge your limits. Come to terms with feeling overwhelmed (it will happen) and resolve to be firm when deciding what you can and cannot handle on your own–so that no one faces cancer alone.

Do you have your own tips for being a caregiver? Share your experience and your best tips by becoming a member of our Cancer Experience Registry: Caregivers. Your voice will help us better meet the social and emotional needs of all caregivers.

About the Cancer Support Community: The mission of the Cancer Support Community is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community.  As the largest, professionally led nonprofit network of cancer support worldwide, the Cancer Support Community delivers a comprehensive menu of personalized and essential services including support groups, educational workshops and social activities for the entire family at more than 100 locations and online. To learn more, call the Cancer Support Helpline at 888-793-9355 and check out the CSC blog.

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Honoring National Hereditary Breast and Ovarian Cancer Week

This week marks National Hereditary Breast and Ovarian Cancer (HBOC) Week, a time to raise awareness and recognize those affected by hereditary cancer.

HBOC week transitions between Ovarian Cancer Awareness Month and Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer.

Hereditary Breast and Ovarian Cancer Fast Facts

  • About 20 to 25 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease.
  • The lifetime ovarian cancer risk for women with a BRCA1 mutation is estimated to be between 35% and 70%.
  • Women who have one first-degree relative with ovarian cancer but no known genetic mutation still have an increased risk of developing ovarian cancer.
  • The lifetime risk of a woman who has a first degree relative with ovarian cancer is five percent (the average woman’s lifetime risk is 1.4 percent).
  • Women who have had breast cancer have an increased risk of ovarian cancer.
  • Both women and men can inherit cancer-causing gene mutations, and both men and women can pass such mutations to daughters and sons.

Additional Resources:

National Hereditary Breast and Ovarian Cancer Week

American Cancer Society and MyLifeLine.org Announce Partnership

DENVER, CO (August 20, 2015)- The American Cancer Society and MyLifeLine.org Cancer Foundation (MyLifeLine.org) are pleased to announce a new partnership to provide social and emotional support services to all people affected by cancer. The American Cancer Society is the latest nonprofit partner in MyLifeLine.org’s eight-year history.

Through the partnership, cancer patients and caregivers can connect to their community of family and friends for support through a free website via acs.mylifeline.org, allowing them to share their cancer journey and focus on healing. Services include posting health statuses and photos to easily share updates in one central location, tools to help with medical and other treatment expenses, a calendar to help organize volunteers for meals and rides and numerous resources specific to most cancer types.

“This partnership means that more cancer patients and their loved ones will have another excellent resource to help meet their survivorship needs and make their cancer experiences as stress-free as possible,” said Chuck Westbrook, senior vice-president, Cancer Control Programs and Services, American Cancer Society. “Giving them access to a tool like MyLifeLine.org makes it easier for them to ask for help and share news with their friends and family so they can focus on getting well.”

“The American Cancer Society and MyLifeLine.org share the common goal of helping people affected by cancer,” said Pete Sheehan, CEO of MyLifeLine.org. “We reduce stress, anxiety, and isolation after a cancer diagnosis by connecting cancer patients and caregivers to their community of family and friends for social and emotional support. We’re excited about the partnership with the American Cancer Society which will help more people access our suite of tools and services.”

Through the new partnership, MyLifeLine.org will provide websites and social support services to constituents of the American Cancer Society, and the American Cancer Society will direct patients and caregivers to MyLifeLine.org’s services. More information about the partnership can be found here: mylifeline.org/acs.

Both organizations are committed to helping people affected by cancer navigate the communication challenges that arise after a cancer diagnosis.

About MyLifeLine.org

MyLifeLine.org Cancer Foundation connects cancer patients and caregivers to their community of family and friends for social and emotional support. We provide online communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing. MyLifeLine.org is a 501(c)(3) nonprofit organization providing services free to anyone impacted by cancer. Since 2007 MyLifeLine.org has served more than 130,000 people globally in more than 20 countries. More information is available at MyLifeLine.org.

Speak Up During Men’s Health Month

This is a guest blog post by Ivy Ahmed, Director of Patient Education for ZERO – The End of Prostate Cancer.

At ZERO – The End of Prostate Cancer, our mission is to end prostate cancer. We lead the fight to end the disease by advancing research, encouraging action, and providing education and support to men and their families.

June is Men’s Health Month and an important month here at ZERO. This month we launched our #DoItForDad campaign to create awareness to end prostate cancer. As ZERO’s Director of Patient Education for ZERO, I love this month because it is a wonderful opportunity to shine a light on a disease that affects 1 in 7 men and begin a dialogue encouraging men to take care of themselves and to take charge of their health.#DoItForDad

I kicked off Men’s Health Month by attending the largest conference addressing research and advances in cancer, the Annual Meeting of the American Society of Clinical Oncology. It was a great opportunity to learn about exciting research that is being done to help us end prostate cancer. Such tremendous progress is being made every day to better understand the disease and find new ways to fight it. I also had a chance to see our friends from MyLifeLine.org and learn more about the great work they are doing every day.

In addition to attending the conference, I participated in a virtual Blogger Summit as part of the Men Who Speak Up program launch. The goal of the program is to bring awareness to the signs and symptoms that of advancing prostate cancer so that men with advanced disease can talk about their symptoms and learn about treatment options available for them. Visit the site to learn more about what men with advancing disease are saying and to find some helpful resources to maximize each doctor’s visit. The program was developed through our partnership in the International Prostate Cancer Coalition with support from Bayer.

Speaking up about your health as a man is very important especially around prostate cancer. Talking about your health and engaging with others doesn’t always come naturally, so I’ve included a few tips below to get you started.

  1. Be informed and know your personal risk for prostate cancer. Talk to your doctor about a plan for testing when the time is right for you.
    • The most common risk factors for prostate cancer are:
      • Increasing age
      • African American ancestry
      • Family history of prostate cancer
  2. If you have been diagnosed with prostate cancer, get educated by learning about your options and asking questions. Treatment options for cancer that is still in the prostate are different than those options available for men with more advanced disease.
    • Ask questions such as:
      • What is the stage and grade of my prostate cancer?
      • What are all of the treatment options for someone with my type of prostate cancer?
      • What are the potential side effects from these treatment options and how will they be managed?
  3. Have an open dialogue with family members about prostate cancer and other men’s health issues.
  4. Celebrate Men’s Health Month and Father’s Day by making a difference! Join ZERO in spreading the word:
    • Follow us on social media – facebook, twitter, and Instagram
    • Register for one of our nearly 40 Run/Walks nationwide
    • Participate in our #DoItForDad campaign

Together we can keep the conversation going to save lives and keep families together. To learn more about prostate cancer, risks, treatment, and ZERO, please visit www.zerocancer.org.

4 ways MyLifeLine.org can help during your cancer experience

When someone is diagnosed with cancer it’s easy for them to become overwhelmed with the influx of new information. Not only are they suddenly bombarded with doctor appointments, gathering resources, learning about their diagnosis and making treatment decisions, but there’s the family members and friends who want regular updates on progress and want to know how to help.

Returning every phone call, email and request for information can be exhausting. MyLifeLine.org Cancer Foundation is an important resource that can help relieve the burden of communication that cancer patients and caregivers often feel.

Here are a few ways MyLifeLine.org can help:MyLifeLine Features

  1. Build a Community of Support. Patients and caregivers can easily organize and coordinate the help they need using the Helping Calendar. Set up rides to treatment, a babysitter for the kids or a friend to bring meals, all through your MyLifeLine.org personal site.
  2. Communicate with Friends and Family. Patients can share updates on progress and treatment, or use the tool to journal about their experience, all in one central location. Patients often use MyLifeLine.org as an outlet and personal blog during their experience, and friends and family can leave comments of encouragement and support on each update.
  3. Collect Resources on Your Specific Cancer. The Learning Links tool enables patients to collect resources and share information about their specific cancer type with friends and family, so they can easily get a betterunderstanding of their diagnosis.
  4. Create a Personal Fundraiser. Friends and family can easily donate directly to the patient to help with treatment costs and other medical needs using PayPal through the Giving Angels tool on your MyLifeLine.org personal site.

Every day, MyLifeLine.org provides free, personal and private websites to cancer patients and caregivers to help them easily connect with family and friends, because every cancer patient should feel supported. A patient – or a friend or family member, can create a site and invite guests to visit and offer support. Click here to set up a MyLifeLine.org personal site and start building your online support community.

MyLifeLine.org Ribbon

It’s Good To Be Blue

This is a guest blog post by the Colon Cancer Alliance in honor of Colon Cancer Awareness Month.

National Colon Cancer Awareness Month is the time of year when the country unites and takes to the streets to raise awareness by dressing in blue, celebrating survivors, honoring those passed and encouraging others to get screened for colon cancer, the third most commonly diagnosed cancer and the second leading cause of cancer death in men and women combined in the U.S.

Being proactive with health is one way to stay on the offensive with this disease. However, getting screened for colon cancer is something that many avoid doing or even talking about.

Colon-Cancer-Alliance

Colon Cancer Alliance Month reminds us to get checked! Colon cancer is preventable and treatable if caught early.

While American Cancer Society screening guidelines call for men and women at average risk for the disease to begin colon screening at age 50, 23 million Americans in that age group are not getting screened as recommended, increasing their risk of being diagnosed with colon cancer at a late stage when it is much harder to treat. Truth be told, people in their 20’s, 30’s and 40’s are getting diagnosed at increasing rates making it increasingly important to get checked if you have a family history of colon cancer or are having signs and symptoms.

Before colon cancer develops, a polyp—or non-cancerous growth—usually appears on the inner lining of the colon or rectum. The identification and removal of these polyps, through routine screenings, can effectively prevent colon cancer from ever forming. Because most polyps and early-stage cancers cause no symptoms, adherence to routine screenings is critical to cancer detection.

Colonoscopy is the most comprehensive procedure to detect and remove cancerous and precancerous lesions. However, despite its critical importance, some are unwilling to undergo colonoscopy because the procedure is invasive and requires bowel preparation, including a clear liquid diet and laxatives.

Recently, another option approved by the FDA called Cologuard gives those who are unwilling or unable to undergo colonoscopy an accurate, noninvasive screening test they can take in the privacy of their own home. What makes Cologuard different from other noninvasive colon cancer screening tests is that it is designed to analyze and detect both altered DNA and blood biomarkers in the stool known to be associated with cancer and precancers. Cologuard is approved for use by men and women, 50 years of age and older, who are at average risk for colon cancer.

Colon cancer is preventable and treatable if caught early. Here at the Colon Cancer Alliance, we are passionate about creating a world free of colon cancer where education, early detection and treatment lead to survivorship for all. At the end of the day, it doesn’t matter which screening option you choose—after all, the best test is one that gets done—so don’t put it off any longer, now is the time to call your physician and get screened.