Loss of Muscle & Weight from Lung Cancer

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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.

MyLifeLine.org Celebrates National #Ribboning Day

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In an effort to raise awareness and humanize the cancer ribbon, MyLifeLine.org launched National #Ribboning Day in 2015. In its inaugural year, National #Ribboning Day resulted in participation from InStyle Magazine, fashion designer Zac Posen, Ralph Lauren, Women’s Health Magazine and hundreds of other cancer supporters across the nation.

This year, we invite you to participate in the second annual National #Ribboning Day on Saturday, July 16.

How to participate in National Ribboning Day:

  1. Take a photo of yourself in the “Ribboning” pose with your body in the shape of a cancer ribbon.
  2. Post the photo to Facebook, Twitter or Instagram with #Ribboning and share who you are Ribboning for.
  3. Invite 3 friends to join #Ribboning and donate to MyLifeLine.org.

You can help MyLifeLine.org ensure that all cancer patients and caregivers feel supported throughout their cancer journey by making a donation to the #Ribboning campaign. Each contribution of $33 supports a cancer patient and their community for one year.

To learn more about the #Ribboning campaign and to make your donation to MyLifeLine.org, please visit www.mylifeline.org/ribboning.

 

MyLifeLine.org Attends American Society of Clinical Oncology (ASCO) Annual Meeting

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MyLifeLine.org Cancer Foundation was honored to be among over 30,000 of the brightest minds in oncology, including researchers, physicians, industry professionals and other patient advocates at the 2016 ASCO Annual Meeting in Chicago from June 3-7.

This year’s meeting theme, The Future of Patient-Centered Care and Research, focused on the importance of creating a system of engaged, well-informed patients and health care teams to provide patients with high-quality and high-value personalized cancer care.

During the conference, we met with our partners and other patient advocates to discuss advancements in their oncology programs and how we can partner to meet the needs of cancer patients and their caregivers. MyLifeLine.org was invited to exhibit in the Patient Advocacy area, where we were able to share the important work we do to provide all people affected by cancer with social and emotional support services with attendees. This was our 9th year exhibiting at the conference and we were proud to present the advancements of our program that has now served over 151,000 cancer patients, caregivers and their support communities since our inception in 2007.

MyLifeLine.org also hosted its first Industry Advisory Council kick-off meeting on Thursday, June 2nd as part of the ASCO conference. The meeting brought together the council’s founding members in the pharmaceutical and oncology industry with the goal of better understanding the advocacy needs of the industry and identify collaborative opportunities to better serve the cancer community. Founding members of the council include Genentech, Genomic Health, Eisai, Helsinn, Pfizer and Lilly Oncology.

We look forward to continuing our work with industry partners to better meet the evolving needs of cancer patients, caregivers and their families and friends.

Maria Smith, Senior Director of Marketing & Corporate Development and Marcia Donziger, MyLifeLine.org Founder, at the organization's booth at ASCO.

Maria Smith, Senior Director of Marketing & Corporate Development and Marcia Donziger, MyLifeLine.org Founder, at the organization’s booth at ASCO.

Imerman Angels and MyLifeLine.org Partner To Bring Social Support Services to Cancer Patients and Caregivers

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Imerman Angels and MyLifeLine.org Cancer Foundation announce a new partnership to bring social and emotional support services to more people impacted by cancer. Imerman Angels, a global nonprofit that provides free one-on-one support to cancer fighters, survivors and caregivers, is joining with MyLifeLine.org, an organization that empowers cancer patients and caregivers to build an online support community of family and friends through free, personalized websites.

Imerman Angels, currently celebrating its 10-year anniversary, matches cancer fighters, survivors and caregivers with a Mentor Angel – a volunteer who has been through the same experience. Criteria including type of cancer, stage, age and lifestyle are all taken into account when making the matches.

MyLifeLine.org connects cancer patients and caregivers to their community of family and friends for social and emotional support by providing unique communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing.

Imerman Angels and MyLifeLine.org were both founded by young adults diagnosed with cancer, who realized during their fight that there was a void in the cancer community that needed to be filled: emotional and social support.

MyLifeLine.org founder Marcia Donziger was diagnosed with ovarian cancer when she was just 27 years old. She felt grateful, yet overwhelmed, by the number of calls she received from family and friends wanting an update on her condition. At times, she felt emotionally drained from repeating the same information over and over again. Marcia saw an opportunity to make a difference for other cancer patients, and began extending the benefit of a free, personal website to all cancer patients and caregivers through MyLifeLine.org.

Jonny Imerman, founder of Imerman Angels, was diagnosed with testicular cancer at the age of 26. Throughout his experience, Jonny was lucky enough to have loving support from his family and friends, but he had never met anyone his age who was a cancer fighter or survivor. He wanted to talk to someone who truly understood what he was going through, who was intimately familiar with his experience. In short, he was looking for someone around the same age who had survived the same type of cancer. This was the beginning of Jonny’s vision, which became a reality when he founded Imerman Angels.

“To date, Imerman Angels and MyLifeLine.org have provided support to over 175,000 cancer fighters, survivors, caregivers and their friends and family members, and hope to reach thousands more through our combined efforts. This partnership will significantly broaden the community and reach of both organizations, allowing us to help thousands more of those whose lives have been affected by cancer. The potential impact is enormous,” says Imerman Angels CEO and Executive Director Ben Bornstein, a three-time cancer survivor.

“This partnership offers cancer patients and caregivers two ways to receive social and emotional support through referrals and resources from both organizations,” says Pete Sheehan, MyLifeLine.org CEO. “Imerman Angels provides one-on-one support which is incredibly beneficial to people impacted by cancer. MyLifeLine.org allows patients and caregivers to connect with their entire community for inspiration and encouragement, which is a one-to-many support model. Together we will be able to help a greater number of cancer patients find the type of support service that best meets their needs. Our combined goal is to help get people through their cancer journey and achieve a positive outcome.”


For more information on MyLifeLine.org, visit www.MyLifeLine.org or call 888-234-2468.

For more information on Imerman Angels, visit www.ImermanAngels.org or call 866-IMERMAN (463-7626).

Subaru “Shares the Love” with MyLifeLine.org

MyLifeLine.org is excited and honored to be chosen by Shortline Subaru as a local charity beneficiary during Subaru of America’s annual “Share the Love” fundraising event.

For every new Subaru sold, Subaru donated $250 to the purchaser’s choice of one of the four national charities. Drivers in the Aurora and greater Denver area could instead choose to donate those dollars to two local charities, including MyLifeLine.org.

This successful campaign raised more than $76,000 for people affected by cancer who rely on MyLifeLine.org every day for social and emotional support services.

We would like to thank  Subaru of America, Shortline Subaru and its owners Don and Laurie Hicks for their active involvement with MyLifeLine.org and the local community.

Share the Love - Check Presentation 2016

MyLifeLine.org board and staff members accept the check for Subaru’s Share the Love event.

MyLifeLine.org hosts annual Jockeys, Juleps & Jazz event

MyLifeLine.org’s annual Jockeys, Juleps and Jazz Kentucky Derby fundraising event was a tremendous success. Friends, members, sponsors and supporters came out in their festive Derby attire to support MyLifeLine.org and raise vital funds to support our mission.

On May 7, more than 300 guests dined on a traditional menu of southern cuisine, sipped on signature mint juleps, bid on silent and live auction items and cheered on the running of the 142nd Kentucky Derby.

The event was also an opportunity to celebrate the mission of MyLifeLine.org and honor two awardees with the George Karl Courage and Visionary Awards.
Eisai was awarded the George Karl Visionary Award, accepted by Teresa Cronin, Director, Corporate Advocacy. Eisai is an industry leader in patient-centered healthcare and we are honored to work with them to serve all people affected by cancer.

The George Karl Courage Award was presented to the Cronk Family, MyLifeLine.org members and caregivers to their son, Brayden, who was diagnosed with Acute Lymphoblastic Leukemia at age 8. The Cronks use MyLifeLine.org to update friends and family and get the support they need during Brayden’s treatment.

The Jockeys, Juleps and Jazz event raised approximently $225,000, allowing MyLifeLine.org to serve even more people affected by cancer and continue to develop innovative and supportive programs for members and guests. Thank you to everyone who attended, sponsored and donated their time and resources to the event.

View and download photos from the 2016 event on our Shutterfly site.

Jockeys, Juleps and Jazz

The Cronk Family at Jockeys, Juleps & Jazz.

The Truth About Clinical Trials

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Clinical trials offer a chance to receive investigational medicines or procedures that experts think might improve the treatment of cancer. This important option is not limited to people who have run out of choices. In fact, there may be clinical trials for every stage of disease in dozens of cancer types.

Concern: I don’t want to be a guinea pig for an experimental treatment.
The Truth: Cancer clinical trials are developed with high medical and ethical standards, and participants are treated with care and with respect for their rights.

Concern: I’m afraid I might receive a sugar pill or no treatment at all.
The Truth: Cancer clinical trials rarely use placebo alone if an effective treatment is available; doing so is unethical.

Concern: Cancer clinical trials are only for people with no other treatment options.
The Truth: Trials can study everything from prevention to early- and late-stage treatment, and they may be an option at any point after your diagnosis.

Concern: I’m worried that I won’t receive quality care in a cancer clinical trial.
The Truth: Many procedures are in place to help you receive quality care in a cancer clinical trial.

Concern: People might access private information about me if I participate.
The Truth: In nearly all cancer clinical trials, patients are identified by codes so that their privacy is protected throughout and after the study.

Concern: I’m afraid that my health insurance will not help with the costs of a cancer clinical trial.
The Truth: Many costs are covered by insurance companies and the study sponsor, and financial support is often available to help with other expenses; talk to your doctor to understand what costs you could be responsible for.

Concern: Informed consent only protects researchers and doctors, not patients.
The Truth: Informed consent is a full explanation of the trial that includes a statement that the study involves research and is voluntary, and explanations of the possible risks, the possible benefits, how your medical information may be used, and more. Informed consent does not require you to give up your right to protection if the medical team is negligent or does something wrong.

Concern: I’m afraid that once I join a cancer clinical trial, there’s no way out.
The Truth: You have the right to refuse treatment in a cancer clinical trial or to stop treatment at any time without penalty

Learn more about clinical trials.

 

Think all breast cancers are the same? Think again.

MyLifeLine.org brings you this resource in partnership with Genomic Health.

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Women facing the difficult decision of whether or not to undergo chemotherapy for their early-stage breast cancer can now make their choice with added confidence, according to new clinical results published in the New England Journal of Medicine.  These results provide strong evidence that the Oncotype DX breast cancer test can be used effectively to help doctors determine a woman’s risk of her breast cancer returning (recurrence), as well as how likely she is to benefit from chemotherapy after breast cancer surgery.

The results were obtained from a unique clinical study, known as TAILORx (Trial Assigning Individualized Options for Treatment (Rx)) in more than 10,000 women with early-stage breast cancer, making it one of the largest-ever trials to look at the impact of breast cancer treatment options following surgery.   Each participant in the study was first tested with the Oncotype DX breast cancer assay, a genomic test that looks at 21 genes in a woman’s individual tumor.  Based on the results of that test, each patient received a personalized Recurrence Score indicating the risk of her breast cancer returning.  Using her Recurrence Score as a guide, each woman was then assigned to receive either hormone therapy alone, or hormone therapy plus chemotherapy.

According to initial TAILORx trial results, 1,626 of the 10,253 study participants had an Oncotype DX Recurrence Score of 10 or less and were assigned to receive hormone therapy alone without chemotherapy.  After five years, 99.3% of these women were free of breast cancer recurrence, providing compelling evidence that future breast cancer patients with a low Recurrence Score may skip chemotherapy and its challenging side effects, and instead choose to receive hormone therapy alone.

The large multi-center TAILORx trial is the first trial of its kind evaluating a multigene test, in which patients with early-stage breast cancer were uniformly treated based on their test results and then followed over time to determine how well the test predicted patient outcomes.  This trial design, known as a prospective study, was developed with the input of patient advocates, among others.

“Any patient who is considering chemotherapy should not make this decision without having the results of this test, because if the Recurrence Score is low, the risk of recurrence is very low,” concluded the lead author of the study, Joseph A. Sparano, M.D., vice chairman of medical oncology at the Montefiore Einstein Center for Cancer Care.

Further confirming that Oncotype DX accurately predicts patient outcomes in early-stage breast cancer are “big data” insights provided through a collaboration with the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute (NCI), the premier source of cancer statistics in the U.S. According to a SEER study with more than 44,500 patients, patients with an Oncotype DX Recurrence Score under 18 had excellent breast cancer survival.  The findings show that breast cancer mortality at five years was less than half a percent in patients with node-negative breast cancer and less than one percent in patients with node-positive breast cancer.

The SEER results also revealed significant differences in Oncotype DX testing and outcomes, based on patient age and geographical location. These insights are important, since more than half of the eligible 140,000 patients in the U.S still do not receive an Oncotype DX Recurrence Score when making their critical chemotherapy decision. Additional information from the SEER study is expected later in 2016, as part of Genomic Health’s effort to expand patient access to this valuable test.

Click here to learn more about the TAILORx trial.

Click here to learn more about the Oncotype DX breast cancer test.

After You Hear It’s Cancer: The Unexpected Journey

This is a guest blog post by John Leifer from After You Hear It’s Cancer. Leifer has spent more than 30 years in the health care industry as a senior health care executive, consultant, academician and writer.

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As the spouse of a radiation oncologist, our dinner table conversations often focus on the trials and tribulations of my wife’s patients. Somehow it seems cathartic for Lori to share her patients’ angst – like a long sigh that carries away the collective stress of watching people struggle with their journeys through cancer. Yet, throughout these discussions, rarely did we discuss the possibility that we, too, might be forced to embark on such a journey. Then came Easter 2013, a day that changed our lives.

Easter is a particular sacred and treasured day for my wife who embraces the message that “the worst thing is not the last thing,” and has tremendous faith in the resurrection. That night, three years ago, I had slipped into bed while Lori took a quick shower. Half asleep by the time she joined me, I was suddenly jolted awake by her quiet sobbing. My normally stoic wife was in distress, and I had no clue as to why.

“I found a two-centimeter lesion in my breast. It’s cancer,” Lori said as though reading a pathology report.

I prayed she was wrong.

We awoke numb the next morning, as if fighting off the remnants of a bad dream. But it was no dream, and Lori soon sprang into action — lining up the requisite diagnostic tests to determine our fateful next steps.

After going through a battery of imaging studies, followed by a biopsy, Lori was diagnosed with early-stage breast cancer – and given the option of breast-conserving surgery (a lumpectomy) followed by radiation or a mastectomy.

Though Lori knew that both treatments provided the same statistical probability of cure, she nonetheless struggled with the decision. I realized, then, that if a physician with 25 years of experience treating cancer patients struggled to make the right treatment decision, how extraordinarily difficult it must be for laypeople.

Lori’s lumpectomy appeared to go exactly as planned. After a few hours, the surgeon came out to inform me that he was confident that he’d “gotten it all,” but was careful to advise that cautious optimism was needed until the pathology reports were back. Tears brimmed in my eyes as I heard the news.

The pathologist was shocked when Lori’s tissue samples arrived in her laboratory, for she and Lori were close colleagues. Not wanting Lori to endure the anxiety-ridden wait for results, she worked late into the day to process the slides. Unfortunately, the news was not good.

Not only were the margins (the point at which the surgeon has stopped excising tissue) not clear of tumor cells, but there appeared to be a second type of cancer in Lori’s breast. Lori would need a mastectomy; the only choice was whether it would be bilateral.

Our journey was suddenly more complex, yet Lori came to a decision with relative speed. Because there was lobular cancer in her breast, which is often opaque to diagnostic imaging tests, she did not want to carry the burden of anxiety wondering if another cancer would appear in her other breast.

Recovery from her bilateral mastectomies and reconstruction was a slow and painful process. We were incredibly grateful that her sister, Janet, a nurse at Duke, flew in to aid with her post-surgical care. It would take months, but eventually my energetic, beautiful wife would re-emerge.

There was one, powerful change, however. Though always compassionate, Lori had acquired a new-found empathy for her patients. The arduous nature of the journey was no longer a concept in her mind…it was something she had embarked upon and was surviving.

Our shared journey was a major impetus for writing After You Hear It’s Cancer: A Guide to Surviving the Difficult Journey Ahead. I wanted to do my part to help make this extraordinarily difficult time in patients’ lives, and the lives of their loved ones, a bit easier. Lori served as my clinical consultant on the book.

Our journey does not stop with the book. Today, we are exploring additional ways to help patients and their loved ones understand the twists and turns of the difficult journey through cancer, and how to make truly informed and collaborative decisions with their physicians that incorporate their personal values.

There are no short-cuts on the journey through cancer, but there are ways to make it more tolerable. Our commitment is to help identify them, and share them with those that must follow this life-changing and often unpredictable path.

John LeiferAbout the author: John Leifer, MAPP, has spent more than 30 years in the health care industry as a senior health care executive, consultant, academician and writer. An outspoken advocate for patients’ rights, he has published widely on the need for patients to receive appropriate, safe, effective care.

Lori Lindstrom Leifer, M.D., is a cancer survivor and Assistant Clinical Professor of Radiation at Oncology at the University of Kansas School of Medicine.

For more information, visit: www.afteryouhearitscancer.com or e-mail jleifer@leifer.com