Thursday, October 26, 2017

Stage 4 Breast Cancer: Stories of Survivorship

metastatic breast cancer

Ann Silberman

“I’m sorry, but your breast cancer has spread to your liver.” These may be the words my oncologist used when he told me that I was now metastatic, but to be honest, I can’t recall them clearly. What I can remember is the emotions: shock, disbelief, and the feeling of doom.
I knew that metastatic cancer was a death sentence. Metastasis, the thing that all women with early stage cancer fear, happened to me only four months after my treatment ended. “How could this be,” I thought. I had been stage 2a. I had no nodes. There was little to indicate that mets (metastasis) was going to be my fate.
I soon realized that “why me” is an unanswerable question. It doesn’t matter. It was me, and now my job was to live as long and normally as possible … or so I thought.
Metastatic cancer strips life away from you bit by bit. First, it takes your health. Then it takes your time, your job, and finally your future. Sometimes, horribly, it even takes your friends or family. Those who can’t deal with a diagnosis of metastatic breast cancer drop away.
Magically, you rebuild in this new world. You find kindness in people you never knew cared. Their friendship unfurls in front of you like a flag. They send cards, bring food, and give hugs. They’ll do chores, take you to treatments, and even laugh at your corny jokes.
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You learn that you’re more important to some people than you ever imagined, and that these are the only people who count. They bolster you, and your spirits rise and fear dissipates.
The years since I was diagnosed haven’t always been easy, but you’ll note that I said years. Nobody gave up on me, including the most important person: my doctor. No end date was stamped on me, and progress was always expected. Some of the chemos I underwent worked for a time. Some didn’t, but we never quit.
I lost hair but grew spiritually. I felt happy that I was able to have surgery to remove the cancerous half of my liver, and sadness when cancer grew back in what was left. Battle metaphors applied: Like a warrior, I got out my gamma knife and radiated it.
I slept more than I knew a human could, but the times I was awake were simple and joyful. Hearing the laughter of my sons or the buzzing of a hummingbird’s wings — those things kept me grounded and in the moment.
Amazingly, I am now cancer-free. Perjeta, a drug that was not on the market when I was diagnosed, has done what seven chemos, three surgeries, an ablation, and radiation couldn’t. It gave me my future back. I tentatively step ahead, but I won’t forget the lessons cancer taught me.
The present is where you must live when you have metastatic cancer. The future is only a dream, and the past is vapors. Today is all there is — not only for you, but for everybody. This is the secret of life.
Ann Silberman chronicles her cancer experience on her blog, www.butdoctorihatepink.com.

Katherine O’Brien

I was diagnosed with metastatic breast cancer in 2009 at the age of 43. Although 90 percent of the 155,000 people in the United States currently living with metastatic breast cancer were previously treated for early stage breast cancer, that wasn’t the case for me. I was metastatic from my first diagnosis.
Getting my head around this diagnosis was challenging. Here are six things I wish I had known back then. I hope they will help other newly diagnosed metastatic breast cancer patients.
  • Understand that not all metastatic breast cancer is the same. My mom died from metastatic breast cancer in 1983 when I was 17. Mom lived for three years with the disease, and those were three very difficult years. I immediately assumed that my experience would be identical to hers, but Mom had aggressive, widespread disease. I do not. I have a minimal amount of bone mets, which have been largely stable for the past five years. And of course treatments have changed over the past 30 years. I have never had chemo and won’t have it until all of the less toxic options have failed. Some people with a low-volume of bone-only disease can do well for a long time. I’m fortunate to be one of them.
  • Remember that your mileage may vary. You may assume that a metastatic breast cancer diagnosis means massive changes, but that’s not necessarily the case. I see my oncologist every other month, but I do everything I used to do prior to having stage 4 breast cancer. I go to work every day. I travel. I volunteer. I hang out with my family. Not everyone with metastatic breast cancer can say that, but don’t write yourself off!
  • The issue is the tissue. Your pathology report holds the key to understanding treatment options. While other factors (age, prior treatment, etc.) must be considered, your ER/PR and HER2 are your guideposts. If you were previously treated for breast cancer, insist on a new biopsy if feasible. Cancers can and do change!
  • Get the help you need. If you had a headache, you would almost certainly take an aspirin. So if the stress and your emotions are overwhelming, speak up. Ask your doctor for help. There are effective anti-anxiety medications, and most cancer centers have counselors or can refer you to one in your community.
  • Find support — in person or online. Here is a listing of metastatic breast cancer support groups across the United States. There are many online groups (www.breastcancer.org and www.inspire.com are two examples) that have discussion groups for people living with metastatic breast cancer. Two associations (www.mbcn.org and www.lbbc.org) have annual conferences specifically for people living with metastatic breast cancer.
  • Take it one day at time. You can worry about what did happen or what might happen, or you can enjoy the present time for the gift it is. Stay focused!
Katherine O’Brien is a B2B editor and a board member with the Metastatic Breast Cancer Network. She also blogs at I Hate Breast Cancer (Especially the Metastatic Kind).
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Susan Rahn

The memories I have of the first meeting with my oncologist are hazy, but I clearly remember her saying that she would do all she could to try to keep the cancer at bay. But she also said that there wasn’t a cure for metastatic breast cancer. While sitting there hearing her voice without really comprehending much of what she was saying, the voice in my head was saying, “How did we get here? It was just a backache.”
It’s hard to believe that was a little more than three years ago. According to the statistics — if you go by statistics — I should be dead. A metastatic breast cancer diagnosis has a median life span of 36 months. My 36 months came and went on August 28, 2016 when I was diagnosed with stage 4 metastatic breast cancer de novo in 2013. The cancer had spread outside my right breast, through my bloodstream, and set up shop in my spine and my ribs. I had no idea until my back began to hurt earlier that month. The mammogram I had nine months earlier had been clear. So, to say this diagnosis was shocking is an understatement.
I wish I could say it’s been smooth sailing up to this point. There have been two separate rounds of radiation that caused nerve damage, three separate surgeries, two hospital stays, five different biopsies, and countless tests and scans. I’m on my fourth treatment plan and last non-chemo option.
Knowing that your time is going to be significantly shorter than you had imagined puts things into quite a different perspective. It became very important to me to try to help other people who may find themselves in the same position I did. I had no idea before my own diagnosis what metastatic breast cancer was, or that it was terminal. I went to work to establish a social media presence so I could possibly inform and educate from my experiences. I began blogging, sharing on various platforms, and connecting with other women that had all forms of breast cancer.
I also learned two very eye-opening things: Metastatic breast cancer research is woefully underfunded, and breast cancer is anything but the “pretty pink club” that it’s portrayed to be. I wanted to help change that; to leave a legacy that my now 17-year-old son can be proud of.
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This past August, two of my closest friends invited me to join them in forming a first-of-its-kind digital magazine/community for all those affected by breast cancer: TheUnderbelly.org. We’re committed to shining a light on the darker, but very important aspects of breast cancer that normally go unspoken or are swept under the rug. When the common narrative of how to ‘do’ breast cancer doesn’t resonate, we want to have a safe place for those who want to show up and be their honest selves without judgement. That’s just what we do!
My initiatives to help raise more money for meaningful metastatic research has led me to become an outreach coordinator for The Cancer Couch Foundation. This newly formed organization is run by volunteers and privately funded. All donations go directly to metastatic breast cancer research and 100 percent of all funds are matched by the institutions that are funded by this amazing foundation, which means the money is doubled. There is no other MBC organization like it, and I am very proud to support all their efforts whenever I can.
If someone had asked me five years ago what I would be doing and what my life would be like, this would have been lightyears away from what my answer would have been. I have my days when I get angry because of what I have to do to make sure I keep going. I’d be lying if I said it was all hearts and glitter. But I do feel blessed that I get to work with my friends on a daily basis and I know — I’m positive — that I will leave a legacy that my son will be proud of and will share with his children should my time come before I get to meet them.
Susan Rahn is a breast cancer advocate and one of the publishers/editors of TheUnderbelly.org. She also blogs at Stickit2Stage4.
https://www.healthline.com/health/stage-4-breast-cancer-stories-survivorship?utm_source=Sailthru%2520Email&utm_medium=Email&utm_campaign=breastcancer#6
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Thursday, October 19, 2017


F.D.A. Approves Second Gene-Altering Treatment for Cancer

By DENISE GRADY
Cells taken from cancer patients are genetically engineered to fight cancer at a Kite processing facility.Kite Pharma
The Food and Drug Administration on Wednesday approved the second in a radically new class of treatments that genetically reboot a patient’s own immune cells to kill cancer.
The new therapy, Yescarta, made by Kite Pharma, was approved for adults with aggressive forms of a blood cancer, non-Hodgkin’s lymphoma, who have undergone two regimens of chemotherapy that failed.
The treatment, considered a form of gene therapy, transforms the patient’s cells into what researchers call a “living drug” that attacks cancer cells. It is part of the rapidly growing field of immunotherapy, which uses drugs or genetic tinkering to turbocharge the immune system to fight disease. In some cases the treatments have led to long remissions.
“The results are pretty remarkable,” said Dr. Frederick L. Locke, a specialist in blood cancers at the Moffitt Cancer Center in Tampa, and a leader of a study of the new treatment. “We’re excited. We think there are many patients who may need this therapy.”
He added, “These patients don’t have other options.”
About 3,500 people a year in the United States may be candidates for Yescarta. It is meant to be given once, infused into a vein, and must be manufactured individually for each patient. The cost will be $373,000.
The treatment was originally developed at the National Cancer Institute, by a team Dr. Steven Rosenberg led. The institute entered an agreement with Kite in 2012, in which the company helped pay for research and received rights to commercialize the results.
Largely on the strength of the new treatment and related research, the drug giant Gilead purchased Kite in August, for $11.9 billion.
“Today marks another milestone in the development of a whole new scientific paradigm for the treatment of serious diseases,” the F.D.A. commissioner, Dr. Scott Gottlieb, said in a statement. “In just several decades, gene therapy has gone from being a promising concept to a practical solution to deadly and largely untreatable forms of cancer.”
Side-effects can be life-threatening, however. They include high fevers, crashing blood pressure, lung congestion and neurological problems.In some cases, patients have required treatment in an intensive care unit. In the study that led to the approval, two patients died from side effects. Doctors have learned to manage them better, but it takes training and experience.
Partly for that reason, Yescarta, like Kymriah, will be introduced gradually, and will be available only at centers where doctors and nurses have been trained in using it.
“Ten to 15 authorized institutions will be ready to go at the time of the launch,” a spokeswoman for Kite, Christine Cassiano, said. “In 12 months, we expect to have 70 to 90. There’s a lot that goes into it, making sure each institution is ready to go.”
Companies have been racing to develop new forms of immunotherapy. The first cell-based cancer treatment — Kymriah, made by Novartis — was approved in August for children and young adults with an aggressive type of acute leukemia. It will cost $475,000, but the company has said it will not charge patients who do not respond within the first month after treatment. Novartis is expected to ask the F.D.A. to approve Kymriah for lymphoma and other blood cancers as well, and may vary its price depending on how well it works for those diseases.
Kite also plans to seek approval for other blood cancers, but does not plan to vary Yescarta’s price, said Ms. Cassiano.
The company also hopes that Yescarta will eventually be approved for earlier stages of lymphoma, rather than being limited to patients with advanced disease who have been debilitated by multiple types of chemotherapy that did not work, said Dr. David D. Chang, Kite’s chief medical officer and executive vice president for research and development.
“This is the beginning of many developments in cell therapy in the next few years,” Dr. Chang said in an interview.
He said the F.D.A. had “embraced” the concept of cell therapy, designating it a breakthrough and accelerating the approval process to speed its availability to cancer patients, many of whom do not have time to wait.
Kite and Novartis also hope to produce cell therapies for so-called solid tumors — like those of the lung, prostate, breast and colon — which account for about 90 percent of all deaths from cancer.
Before it was approved and named Yescarta, Kite’s treatment was known by other names: axi-cel, axicabtagene ciloleucel, or KTE-C19.
The study that led to approval enrolled 111 patients at 22 hospitals; 101 of them received Yescarta. They had one of three diseases: diffuse large B-cell lymphoma, primary mediastinal B-cell lymphoma or transformed follicular lymphoma.
Initially, 54 percent had complete remissions, meaning that their tumors disappeared. Another 28 percent had partial remissions, in which tumors shrank or appeared less active on scans. After six months, 80 percent of the 101 were still alive.
With a median follow-up of 8.7 months, 39 percent of the 101 were still in complete remission — a much higher rate than achieved with earlier treatments — and 5 percent still had partial remissions.
“Many patients were seriously contemplating their own mortality,” said Dr. Caron A. Jacobson, who helped conduct the study at the Dana-Farber Cancer Institute and Brigham and Women’s Cancer Center in Boston. “We would be talking to them about other clinical trials, but also about hospice care and quality of life and comfort. You’re really seeing people get their life back. After a couple weeks in the hospital and a couple weeks at home, they go back to work. On its face, it’s quite remarkable and revolutionary.”
The treatment requires removing millions of a patient’s T-cells — a type of white blood cell that is critical to the immune system — freezing them and shipping them to Kite to be genetically engineered to kill cancer cells. The process reprograms the T-cells to attack B-cells, normal parts of the immune system that turn malignant in certain blood cancers. The revved-up T-cells — now known as “CAR-T cells” — are then frozen again and shipped back to the hospital to be dripped into the patient. The turnaround time is about 17 days.
Kite’s cell-processing facility, in El Segundo, Calif., can provide the treatment for 4,000 to 5,000 patients a year, Ms. Cassiano said, adding that the company has applied for approval in Europe, and if it is granted, will probably build a plant there.
Tina Bureau, a fifth-grade teacher from Queensbury, N.Y., was one of the lymphoma patients in the study. Previously, she’d had several types of chemotherapy.
“The cancer would shrink but then it would come right back,” she said.
Last spring, she had the T-cell treatment at the Dana-Farber Cancer Institute and Brigham and Women’s Hospital in Boston. The side effects were ferocious.
“You don’t even recognize your family members,” Ms. Bureau said. “I had some bleeding on my brain, and had to be put in intensive care. The week it was happening, I don’t remember a lot. It was much more difficult for my family than me.”
Within a month, she had a complete remission, which has continued. She is back at work, full time.
“Yes, it can pose life threatening problems,” Ms. Bureau said. “But when you’re in a situation where your life’s threatened anyway, I don’t feel you have anything to lose.”
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Thursday, October 5, 2017

Mouth sores caused by cancer treatment: How to cope

Understand how to manage cancer treatment side effects, including mouth sores, so you can feel more in control as you go through cancer treatment.
By Mayo Clinic Staff
If you're about to begin cancer treatment, be aware that certain treatments can cause mouth sores (oral mucositis).
Mouth sores can be painful and distressing. They can range from a mere inconvenience to a severe complication that may make you unable to continue your cancer treatment.

What are cancer-related mouth sores?

Cancer-related mouth sores form on the inside lining of your mouth or on your lips. The mouth sores appear burn-like and can be painful, making it difficult to eat, talk, swallow and breathe.
Sores can appear on any of the soft tissues of your lips or your mouth, including the gums, tongue, and roof or floor of the mouth. Sores can also extend into the tube (esophagus) that carries food to your stomach.

How do cancer treatments cause mouth sores?

Chemotherapy and radiation — alone or combined — can cause mouth sores. That's because these cancer treatments are intended to kill rapidly growing cells, such as cancer cells.
Some healthy cells in your body also divide and grow rapidly, including the cells that line the inside of your mouth. Unfortunately these healthy cells are also damaged by chemotherapy and radiation.
Damage to the cells in your mouth makes it difficult for your mouth to heal itself and to fend off germs, leading to sores and infections.
Both chemotherapy and radiation can impair your body's germ-fighting system (immune system). With an impaired immune system, viruses, bacteria and fungi can more easily infect your mouth, causing mouth sores or making mouth sores worse.
Bone marrow transplants, also known as stem cell transplants, can lead to mouth sores if you develop graft-versus-host disease (GVHD). In GVHD, the transplanted cells try to reject your body's normal cells. The transplanted cells view your body's cells as foreign and attack them. Mouth sores are just one sign of GVHD.
Newer forms of cancer therapy, such as targeted therapy drugs or drugs that stimulate your immune system to fight cancer, can also produce mouth sores as a side effect. For some of these drugs — such as everolimus (Afinitor) — the sores may be prevented by using a mouthwash that contains the drug dexamethasone.
Here's what you may experience with each type of cancer treatment.

Chemotherapy

Whether you experience mouth sores while undergoing chemotherapy depends on the type and dose of medication you receive, as well as how often you receive your treatment. The chemotherapy drugs most likely to cause mouth sores include:
  • Capecitabine (Xeloda)
  • Cisplatin
  • Cytarabine (Depocyt)
  • Doxorubicin (Doxil)
  • Etoposide (Etopophos)
  • Fluorouracil
  • Methotrexate (Trexall)
Mouth sores caused by chemotherapy treatment usually develop a few days after treatment begins and go away within two or three weeks after stopping chemotherapy. The mouth sores usually reach their peak around the seventh day after chemotherapy treatment ends.

Head or neck radiation therapy

Only radiation aimed at your head or neck causes mouth sores. Whether your radiation treatment will cause mouth sores depends on how much radiation you receive and whether you're also receiving chemotherapy at the same time.
You may begin to experience mouth pain two to three weeks after you begin radiation. More-intense doses of radiation will cause mouth sores to develop more quickly. Mouth sores from radiation may last four to six weeks after your last radiation treatment.

Bone marrow transplant

Mouth sores associated with GVHD develop two to three weeks after a bone marrow transplant.
People who receive transplants usually receive high-dose chemotherapy or radiation to prepare their bodies for the transplant. Since these therapies also cause mouth sores, it can be difficult to tell whether the sores are from the transplant preparation treatment, from infections due to the effects of treatment on your immune system or from GVHD.
Your doctor may test cells from your mouth to determine what's causing your mouth sores.

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8 Breast Cancer Charities That Are Making a Difference

best breast cancer charities
Breast cancer is the most common cancer to affect women. The American Cancer Society estimates that about 1 in 8 women — 12 percent of women in the United States — will develop invasive breast cancer during their lifetime. Combined with male cases of breast cancer, that’s approximately 249,260 diagnoses every year in the United States alone.
Breast cancer is the leading cause of cancer death among women. The need for a cure is therefore urgent.
Here are just some of the top nonprofit organizations leading the fight against breast cancer. Read on for more on how these charities use your donations to accelerate research, provide invaluable support to women living with breast cancer, and educate about prevention and treatment.

Breast Cancer Fund

Breast Cancer Fund
This San Francisco-based nonprofit aims to get at the root of breast cancer by investigating and eliminating linked environmental factors, such as toxic chemicals and radiation. Founded in 1993, the prevention-focused Breast Cancer Fund favors outdoor events, like their 21st annual Peak Hike for Prevention held this past September, or their Climb Against the Odds hike of Mt. Shasta, slated for June 2017. These fundraisers allow the organization to devote more than 75 percent of expenses to programming.
Fun fact: The National Institute of Environmental Health Sciences recently awarded Breast Cancer Fund CEO Jeanne Rizzo the Champion of Environmental Health Research Award.
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Breast Cancer Research Foundation

Breast Cancer Research Foundation
Since its inception in 1993, the Breast Cancer Research Foundation (BCRF) has raised over half a billion dollars in support of its mission to “prevent and cure cancer by advancing the world’s most promising research.” The Foundation puts its money where its mouth is, with over 90 percent of expenses directly supporting research and awareness efforts. It’s no surprise then that BCRF was granted an A+ rating from Charity Watch in early 2016.
The foundation tackles breast cancer from multiple research angles, and recently established the “first large-scale global effort” to research metastasis. It will gift an additional $57 million in 2016 and 2017 in research grants.

Breastcancer.org

Breastcancer.org
A massive repository of information on breast cancer, from diagnosis to recovery and all the day-to-day matters in between, Breastcancer.org has provided information to more than 72 million visitors since its founding in 1999 by oncologist Marisa Weiss, M.D. In fulfilling its mission to help women make sense of breast cancer and the complex decisions around it, the site includes some 8,000 pages of content and hosts a peer support communitywith more than 179,000 registered users.
Nearly 60 percent of program expenses go to maintaining the site’s educational and informational repository, with an additional 30 percent of expenses split between prevention education and community forums. Check out their Twitter for tips, stories, research, and more.

 

Dr. Susan Love Research Foundation

Dr. Susan Love Research Foundation

The mission of the Dr. Susan Love Research Foundation is to end breast cancer by driving innovative research and projects getting to the heart of cause and prevention, as well as to minimize the collateral damage of breast cancer treatments. The Foundation maintains a focus on those affected by breast cancer by actively engaging the public and translating science into meaningful findings.
Their efforts include the Army of Women, a diverse group of women and men willing to participate in breast cancer research, and the Health of Women (HOW) Study, an international online survey designed to inform the potential causes of breast cancer. To date, the HOW Study has 53,127 participants. Nearly 82 percent of program expenses support research programs like these, while the remaining 18 percent supports education and outreach programs.
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Living Beyond Breast Cancer

Living Beyond Breast Cancer
This Philadelphia-based organization is celebrating 25 years of providing information and a community of support to people affected by breast cancer. Living Beyond Breast Cancer (LBBC)’s services include a telephone helpline, and an online chat helpline, launched last year. In 2015, the organization also expanded its Young Women’s Initiative, a curriculum designed to support and educate women under 45 about breast cancer.
More than 80 percent of LBBC’s expenses are devoted to programming and expanding the community of support available to people affected by breast cancer. Follow their Twitter for more digital resources, and keep an eye open for info on their next Twitter chat.

National Breast Cancer Coalition

National Breast Cancer Coalition
The National Breast Cancer Coalition (NBCC) mission is simple — to know how to end breast cancer by 2020. Founded in 1991, the NBCC uses “the power of action and advocacy” to advance research, increase federal funding for research, and make ending breast cancer a government priority.
In 2010, the organization set its January 1, 2020 deadline for finding a cure. To achieve this goal, the NBCC outlined four priorities for 2016, including securing $150 million for the Department of Defense Breast Cancer Research Program. Donations to the coalition are split between efforts, with some 10 percent supporting public policy efforts, 27 percent supporting research, and 30 percent supporting education and training. Track their progress by following their Twitter, or check out the hashtag #PinkisnotEnough.
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National Breast Cancer Foundation, Inc.

Young Survival Coalition
After being treated for breast cancer in 1980, Janelle Hail founded the National Breast Cancer Foundation (NBCF) to provide help and hope through detection services, education, and community support. The foundation provides educational resources, such as the online guide Beyond the Shock for those recently diagnosed, as well as through support for on the ground patient services, like the National Mammography Program, which provides free mammograms and diagnostic services to underserved women across the country.
In 2015, the National Mammography Program provided more than 16,500mammograms, breast exams, ultrasounds, and other services to women in need. With 85 percent of expenses supporting programs like these, it’s no wonder that the NBCF has 11 four-star ratings from Charity Navigator.

Young Survival Coalition

Founded in 1998 by three women who were diagnosed with breast cancer under the age of 35, the Young Survival Coalition (YSC) aims to help other young women facing breast cancer connect, learn, and speak up.
The organization facilitates connections between survivors through online forums and video support groups, and helps women navigate breast cancer with resource kits tailored to different stages, like those who are newly diagnosed, metastatic, and post-treatment. The coalition recently released a research agenda, informed by two years of collaboration with over 50 advocates, medical professionals, and researchers.
Article resources
https://www.healthline.com/health/breast-cancer/charities-making-a-difference?utm_source=Sailthru%2520Email&utm_medium=Email&utm_campaign=breastcancer#1

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