BY GUEST BLOGGER | JANUARY 9, 2014
For those of you who aren't familiar with the "whatever it takes" style of parenting, it's basically doing whatever it takes to keep everyone alive, well and happy. It's when you swore you would never give your child candy yet you're stashing suckers in your purse. I have (on more than one occasion) actually had to place a banana peel on the grocery store conveyer belt. Yep, I just paid for a banana peel, but it kept my child from screaming in the produce aisle...whatever it takes, right?
A friend with muscular dystrophy told me she often feels judged at her daughter's preschool when making her toddler walk inside the building, instead of carrying her like the other moms. When you have health issues – be it MD, cancer or something else – you have physical limitations other people don't understand. So what if you make your child walk into the school herself or teach your toddler how to climb into his own car seat.
Do whatever it takes to keep going.
And that includes ignoring guilt about not being the perfect parent and nasty looks from people who think such a creature exists. As a wife and mom living with cancer, I have started applying the whatever it takes theory to other areas of my life as well. While a "normal person" might say he/she has a lot on their plate, some of us have plates the size of a turkey platter. My day to day can be pretty heavy, so I give myself a pass on the little things like laundry to fold or dishes to wash.
I went in for my last PET of the year, and while overall I am still doing well, my cancer is starting to resist my current medication. Which means a new drug (but not back in the chemo chair yet!) and surgery. Instead of thinking about the big picture of what this means or the number of medications I haven't crossed off the list yet, I keep my sanity by taking the tactical approach. After all, I am a list maker.
1. New drugs? Researching new side effects.
2. Surgery? Scheduled as soon as possible.
3. Two week without driving? Time for a long visit from Mom.
4. Six weeks without lifting my 2-year old? Teaching Henry how to climb in and out of the car seat
Let's do this thing. I'll do whatever it takes to keep everyone alive, well and happy...including me.RELATED POSTS
BY GUEST BLOGGER | JANUARY 8, 2014
Last year was a lively one for research on triple-negative breast cancer. Below is my list of the year's top studies -- all pointing toward understanding what makes TNBC tick, which will ultimately lead to treatment and a reduction in the risk of recurrence.
Remember, though, that the road from research to clinical practice can be long and rocky, so most of these treatments won't be immediately available. Still, this list points to a rich reservoir of inquiry and information -- which is good news for those of us on the TNBC Road and for those who follow us.
1. New Treatment Regimens Include Existing Drugs
• Bisphosphonates such as Zometa and Reclast reduced the risk of bone metastases following breast cancer in post-menopausal women by 34 percent in research presented at the 2013 San Antonio Breast Cancer Symposium. And they reduced the risk of death in that same group by 17 percent, regardless of receptor status, node involvement or previous chemotherapy.
• Adding the chemotherapy drug carboplatin to standard treatment improved outcomes for women with triple-negative breast cancer in two studies presented at the 2013 San Antonio Breast Cancer Symposium. Both measured pathological complete response (pCR), which is recognized as a positive marker for overall survival. The second study also showed improved outcomes using bevacizumab (Avastin).
• Triple-negative breast cancers may be vulnerable to drugs like bortezomib (Velcade), which is used in multiple myeloma, according to a paper in Cancer Cell. In lab tests, researchers selectively "turned off" genes in triple-negative tumor cells. When turned off, the cells die.
• Tumor-infiltrating lymphocytes may become an additional factor in determining which types of triple-negative breast cancer respond best to chemotherapy. Seventy-five percent of tumors with the highest levels of lymphocytes -- researchers call this lymphocyte predominate breast cancer (LPBC) - had a pathological complete response to doxorubicin and taxane plus carboplatin when compared to non-LPBC tumors. The results came from the GeparSixto trial (GBG 66) in Germany.
• The diabetes drug metformin can effectively reduce breast cancer risk that is associated with insulin resistance and was directly correlated with Ki67 status, according to research in the British Journal of Cancer. TNBC has shown links to insulin resistance in previous studies, and many TNBC tumors are positive for Ki67.
2. New Drugs May Be On The Horizon
• An anti-copper drug compound that disables the ability of bone marrow cells from setting up a "home" in organs to receive and nurture migrating cancer tumor cells has shown benefit for metastatic triple-negative breast cancer. Results of a phase 2clinical trial reported in the Annals of Oncology show that patients who are copper depleted show a significantly reduced risk of relapse. In fact, only two of 11 study participants with a history of advanced triple-negative breast cancer relapsed within 10 months after using the anti-copper drug, tetrathiomolybdate (TM).
• A protein called Numb may promote the death of cancer cells by binding to and stabilizing the tumor suppressor protein p53, which is implicated in many cases of triple-negative breast cancer, according to research published in the May 23rd issue of Molecular Cell. When Numb is reduced by the Set8 enzyme, it will no longer protect p53.
3. Genetic Research Is Leading Toward Better Definition of TNBC
• Beyond its most basic definition -- negative for receptors for estrogen, progesterone and Her2/neu -- triple-negative breast cancer has unique genetic characteristics. Research published in the journal Cancer Research outlined some of TNBC's genetic associations.
• In a study published in the journal Breast Cancer Research, scientists discovered that basal-like breast cancers with the BRCA1 mutation--many of them TNBC--grow differently than other cancers. In fact, the way they grow predicts the prognosis of the tumor.
• Cancer Scientists at Weill Cornell Medical College have discovered the molecular switch that allows triple-negative breast cancer cells to grow the amoeba-like protrusions they need to crawl away from a primary tumor and metastasize throughout the body. Their findings, published in Cancer Cell, suggest a novel approach for developing agents to treat cancer once it has spread.
• Researchers at St. Louis University have uncovered a pathway responsible for the loss of 53BP1 in TNBC tumors related to the BRCA1 mutation. Loss of BRCA1, they discovered, increases the expression of the protease cathepsin L (CTSL), which causes the degradation of 53BP1. Cells that have lost both BRCA1 and 53BP1 have the ability to repair DNA and proliferate. That means the protease helps cancer cells with faulty BRCA1 survive -- it is a defined bad guy in TNBC growth.
4. Technological Advances Improve Imaging, Diagnosis, and Treatment
• An optical imaging technique that measures metabolic activity in cancer cells can accurately differentiate breast cancer subtypes, and it can detect responses to treatment as early as two days after therapy administration, according to a study published in Cancer Research, a journal of the American Association for Cancer Research.
• UCLA researchers have developed a potential new treatment for TNBC that uses nanoscale, diamond-like particles called nanodiamonds. Byproducts of conventional mining and refining operations, nanodiamonds can form clusters following drug binding and have the ability to precisely deliver cancer drugs to tumors, significantly improving the drugs' desired effect.
5. Lifestyle Changes Continue to Show Promise
• Researchers from Fox Chase Cancer Center have found that omega-3 fatty acids slow or stop the proliferation of triple-negative breast cancer cells more effectively than cells from luminal types of the disease. The omega-3s worked against all types of cancerous cells, but the effect was observed to be stronger in triple-negative cell lines, reducing proliferation by as much as 90 percent.
• Young women who eat excess amounts of saturated fats during their teenage years increase their risk of basal-like breast cancer, according to a study published in Breast Cancer Research. Many basal-like tumors are also triple-negative.
Patricia Prijatel is a TNBC survivor, advocate and writer. This post is an excerpt from "Top Triple-Negative Breast Cancer Research: 2013," published on Patricia's blog, Positives About Negative. Read more about TNBC in Patricia's book, Surviving Triple-Negative Breast Cancer, available from Oxford University Press.RELATED POSTS
BY GUEST BLOGGER | DECEMBER 28, 2013
It's not happiness that brings you gratitude, it's gratitude that brings you happiness. Today I am a very happy girl. As I sat in the Louis Armstrong Airport waiting for my delayed flight home to Philadelphia from the American Society of Hematology's Annual Meeting (#ASH13 on social media) I am reflecting back on my experience. I have a lot for which I am grateful.
I am grateful for the educational grant that enabled the International Myeloma Foundation (myeloma.org) to bring 12 patient advocates from across the United States to the American Society of Hematology's Annual Meeting (hematology.org).
I am grateful that IMF asked me to be one of those patient advocates this year and report from #ASH13.
I am grateful for the progress that has been made in treating myeloma in the last decade; because of these advances I am well enough to travel alone halfway across the country five years post-diagnosis.
I am grateful for the many discussions I had with my fellow advocates during our time in New Orleans. These conversations both formal and informal enlightened me on treatment options, clinical trials, side effect management, advocacy and the best place to get a muffuletta.
I am grateful for all the researchers that are bringing new treatment protocols and drugs to clinical trial. The passion I felt during the presentations of medical research abstracts and at the satellite events held throughout the conference was contagious.
I am grateful to everyone who has helped fund research, from the individual patient who held a grassroots bake sale to all who lobbied Washington to restore government funds for medical research.
I am grateful to my fellow myeloma warriors who have participated in clinical trials; without them we wouldn't have made any progress in our war against myeloma or have research abstracts to present.
I am grateful for the education the IMF has provided me, from the new patient resource packet I received in the mail days after my diagnosis to the ongoing educational webcasts. The IMF hosted 3 live webcasts from #ASH13 and there are several recorded #ASH13 interviews posted on their website.
I am grateful for social media that has allowed me both to learn from others and share what I learned through Twitter - @MyelomaTeacher #ASH13IMF (I was in the top 5 influencers at #ASH13), IMF blogs, and a Patient Power interview.
I am grateful for my family and friends who continue to support me in my efforts to be a patient advocate.
This list could go on and on.
I plan on using what I learned to help others at my local in-person support group, in the several online communities of which I am a member, in my mentoring of newly diagnosed patients, by participating in myeloma related webcasts, and through continued engagement in social media.
Remember to use the following IMF link to get all the myeloma highlights from #ASH13.
Goodbye New Orleans, but thanks for the memories!
Cynthia Chmielewski, a retired educator, is a patient advocate and mentor, a patient services volunteer, and a "life-long learner" who lives in New Jersey. She is an advocate for IMF and a five-year survivor of myeloma. This blog was originally published at myeloma.org. You can find her on twitter at @MyelomaTeacher.RELATED POSTS
BY GUEST BLOGGER | DECEMBER 16, 2013
Breast cancer advocacy can take many forms: outreach in the community; lobbying on Capitol Hill for research funding; acting as a consumer advocate in grant review; or working with scientists to develop a research study. Regardless of the form of advocacy you practice, the Alamo Breast Cancer Foundation's advocacy program at the San Antonio Breast Cancer Symposium (SABCS) is something you must consider.
Although I have been an advocate for over five years now, this December was my first time attending SABCS and I was honored to attend as an Alamo Breast Cancer Foundation (ABCF) Patient Advocate. It was an amazing experience.
All Alamo patient advocates arrived on Monday for orientation and dinner led by the ladies of ABCF. It was a great opportunity to meet fellow advocates, including some international advocates, learn about our schedule and prepare for the days ahead. Those days would be very full, starting by 7 or 8 a.m. and going until 9:30 p.m. at night. On Tuesday morning, advocates attended the Project LEAD educational session with fabulous speakers Drs. Gil Welch and Dennis Slamon who gave us a preview of some of the information we would hear at SABCS.
From Dr. Welch we learned about his recent research into screening mammography and overdiagnosis, which he would present the following morning at SABCS. His findings would be called "controversial" by some and sure to spark debate. Tuesday afternoon advocates attended a minimum of two of the Editha Kapoor Breast Cancer Educational Sessions with an optional evening program as well on breast cancer genetics. After a 7 a.m. educational breakfast session on Wednesday with the American Association for Cancer Research (AACR), advocates headed to the official opening of SABCS.
From Wednesday on, the convention center was packed with over 10,000 advocates, breast cancer researchers and treating physicians. The days were a mix of plenary lectures, general sessions, case discussions, honorary lectures, poster presentations and receptions. During the general sessions, selected speakers presented in 15 minute increments recent results of their research -- unveiled for the first time at SABCS. The studies covered a variety of topics from surgery, to treatment, to reducing breast cancer risk, to quality of life issues, although the latter two categories were definitely fewer in number than the first two.
At the end of each day, ABCF presented their "hot topic" mentor sessions which featured prominent doctors and researchers who summarized the highlights of the day and explained the research in more detail, putting it into context and using easily understandable language. Advocates also had the opportunity to ask questions after the presentations. Although developed initially for just the ABCF scholarship recipients, this highly acclaimed program now attracts a couple hundred SABCS attendees every night who want to hear and understand the day's news. This session is also a way for the ABCF advocates to understand more about the "hot topic" assigned to them, on which they will write and submit a newspaper article-style summary as part of their scholarship requirements. At the last mentor session, all ABCF advocates "graduated" receiving a certificate and photo to commemorate the occasion.
SABCS is something all advocates should experience, and I highly recommend applying to and attending through ABCF. SABCS is an educational experience, providing updates on recent research news which advocates can take back to their respective communities. Advocates can meet and interact with the researchers themselves to gain more understanding and clarity. It is also a great opportunity to network with those same researchers as well as fellow advocates. And last but certainly not least, I cannot say enough about the wonderful ladies of ABCF. They were such gracious hosts who made all the advocates feel welcomed and supported. Their passion and enthusiasm was contagious. As a new SABCS attendee, it was nice to be surrounded with friendly faces who provided direction and guidance when needed.
Interested advocates apply in August to receive ABCF scholarship funds to attend SABCS. To date, ABCF has paid for 491 advocates to attend SABCS. For more information on the ABCF's advocacy program and application requirements, please visit alamobreastcancer.org/patient-advocate-program.
Michelle Esser is a seven-year breast cancer survivor from Pennsylvania. She currently works as Program Manager for Research and Advocacy at Young Survival Coalition.RELATED POSTS
BY GUEST BLOGGER | DECEMBER 3, 2013
November was an exciting month for nurses conducting research in the area of cognitive changes related to cancer and cancer treatment.
Many of us were fortunate to attend the Oncology Nursing Society Connections conference in Dallas, where we had the opportunity to share research results and discuss future research projects dedicated to learning more about the cognitive changes that some cancer survivors experience. Additionally, the November issue of the Seminars in Oncology Nursing journal was devoted to "Cognitive Changes Associated with Cancer and Cancer Treatment."
"Chemobrain" and cognitive changes due to cancer and other related treatments pose a challenge to many survivors of cancer. Incidence estimates for cancer-related cognitive changes range from 75 to 90 percent of survivors at some point prior to, during or following treatment.
Around 25 percent of survivors struggle with long-term cognitive effects. Survivors describe the experience of these cognitive changes to include issues such as difficulty with word finding, misplacing things such as keys and cell phones, forgetting why they walked into a room, missing appointments and trouble multitasking. Results from neuro-psychologic tests have shown decreases in processing speed, memory and executive function (the ability to plan out and complete the steps necessary to accomplish a goal). All of these issues cause frustration and can decrease survivors' quality of life.
A great deal of research is being conducted to better understand the causes of these cognitive changes so that preventive strategies and interventions can be developed. Many different theories are being explored such as injury to neural progenitor cells (stem cells that give rise to mature brain cells), changes to DNA-repair genes, accelerated aging of the brain, and genetic pre-disposal to central nervous system injury. Results of studies that include the use of functional magnetic resonance imaging (MRI) and memory testing are demonstrating changes in brain volume and activation.
Additionally, exciting research is being conducted to explore interventions to reduce cognitive injury and/or improve cognitive function. Some interesting results are being seen in the areas of cognitive behavioral training and exercise.
Cognitive Behavioral Training includes exercises to assist with memory and processing speed as well as recommendations for strategies to accommodate for changes in cognitive function. Exercise studies to date have included yoga, Tai Chi, Qigong, aerobic exercise and resistance training. More research needs to be conducted to support the widespread use of these interventions, but these early results are encouraging. Additional results will be presented at the upcoming 2014 International Cancer and Cognition Task Force (ICCTF) Cancer and Cognition Conference to be held in Seattle next February. The Task Force is comprised of oncologists, radiologists, nurses, basic scientists and other disciplines all dedicated to finding solutions to the problem of cancer-related cognitive changes.
One study is currently being conducted to learn more about factors that may predict many of the symptoms associated with breast cancer prior to, during and following chemotherapy (including cognitive changes). Women with breast cancer are being asked to complete a confidential online questionnaire. If you or someone you know are newly diagnosed and have not yet received chemotherapy, or if chemotherapy was completed two or more years ago, please consider helping us learn more about predictive factors by completing the study questionnaire.
Jamie Myers, PhD, RN, AOCNS, is adjunct assistant professor at the University of Kansas School of Nursing and nurse researcher consultant for Carondelet Health in Kansas City. She also is the coordinator-elect for the Oncology Nursing Society Survivorship, Quality of Life, and Rehabilitation Special Interest Group.
To participate in the clinical study mentioned above, go to https://survey.kumc.edu/se.ashx?s=5A1E27D26B60E80F. Participants will be offered the opportunity to receive the study results. If you have questions about the study or would prefer to receive a hard copy questionnaire you can contact Jamie at firstname.lastname@example.org or 913-449-5996.RELATED POSTS
BY GUEST BLOGGER | NOVEMBER 19, 2013
It can be difficult for me to see all the way to 2022. Like so many diagnosed with lung cancer, I have to take things one day at a time. I was diagnosed fewer than two years ago, and I finished chemotherapy in June 2012.
And yet the National Lung Cancer Partnership's vision to double lung cancer survival by 2022 creates a new way to look to the future, adding an extra sense of purpose every day to my support of the lung cancer movement. I am certain that when survival statistics rise, public awareness and research funding will rise with them.
I found out I had lung cancer on February 9, 2012, during an afternoon I should have spent teaching my sweet third grade students. Instead, my family and I gathered together to hear a doctor share the results of a biopsy. I remember watching the doctor as he strung together a series of words; "tumor is malignant... found this late... talk to an oncologist."
The magnitude of those words was life altering. I was 29 years old. How could this have happened to me?
As the reality of living with lung cancer began to settle in, it became a part of my new life. But it was not a one-way relationship. I realized that lung cancer needs a face, a strong voice and above all, the research necessary to find cures.
I am not naïve about what it will take to get us there. So, barely two months after my diagnosis, I began my journey as a fundraiser for the 2012 Free to Breathe Dallas/Fort Worth Run/Walk. I was in the middle of chemotherapy and I had just a month before the event, but I raised over $10,000 for lung cancer research and patient programs. Suddenly, I had a new mission in life.
Looking to keep the momentum going, I attended the Partnership's 2012 Lung Cancer Advocacy Summit and continued my fundraising efforts in 2013. To date, I've already raised over $40,000.
Ultimately, I want to help researchers find more cures for lung cancer, and doubling survival is an important step on that journey. As a survivor who has tested positive for two genetic mutations, I know how much scientific progress is being made on the molecular level. With so much happening on the research front, it's meaningful to me that the Partnership recognizes that research, molecular tumor testing, clinical trials and patient education are the future of survival.
My personal goal for 2022 is simple: I would like to be alive. One day at a time, I am building toward that goal.
My most recent CT scan showed no signs of cancer. My fundraising totals continue to grow. Together, I know we will beat this disease. Together, we will double lung cancer survival, and we will continue working until a cure is available to everyone.
Cassie Gilmore is a lung cancer survivor in the Dallas/Fort Worth area of Texas. You can read more about the National Lung Cancer Partnership's goal to double the five-year lung cancer survival rate by 2022 at nationallungcancerpartnership.org/vision.RELATED POSTS
BY GUEST BLOGGER | NOVEMBER 13, 2013
I am the four percent!
Only four percent of stage 4 stomach cancer patients survive five years after diagnosis. It has now been five and a half years since I was told that I had stage 4 incurable stomach (gastric) cancer.
At the time of my diagnosis I was 40, the mother of three young children, married to a physician and a practicing attorney with my own firm. I was healthy, ate salad and broccoli every day, didn't smoke or drink, exercised, took my vitamins and had no family history of cancer. I had no risk factors for stomach cancer at all.
Suddenly, I was told that I only had a few weeks to live. My 3-year-old daughter would not remember me. My 10-year-old twins would go through their teenage years without a mother. However, I repeated a line from my favorite Dylan Thomas poem that "I will not go gently into that good night," and I began the fight of my life. I immediately underwent very harsh chemotherapy treatments and spent years in bed, hospitals and doctors' offices.
Soon after I started my chemo, I began speaking with other stomach cancer patients because I refused to be just another statistic, and work needed to be done to raise awareness, fund research and support patients, families and caregivers. I started activities to raise funds for stomach cancer research; then it became apparent that there was a great need for resources for patients, families and caregivers all over the world. This was the beginning of Debbie's Dream Foundation: Curing Stomach Cancer which was the first organization dedicated to helping stomach cancer patients, raising money for research and educating the public about stomach cancer.
Just to put this disease in perspective, stomach cancer is the second leading cause of cancer death in men and fourth among women worldwide. Each year nearly 930,000 people worldwide are diagnosed with stomach cancer, and approximately 700,000 die of the disease. Approximately 22,000 Americans will be diagnosed with stomach cancer each year, and over 10,000 will die within a year. According to the American Cancer Society, the overall 5-year survival rate for people with stomach cancer in the United States is about 28 percent, and the 5-year survival rate for stage 4 stomach cancer is 4 percent. Per cancer death, stomach cancer receives the least amount of federal funding of any cancer.
In parts of Asia where gastric cancer is highly prevalent, aggressive screening programs have had some success in detecting stomach cancer early and thereby improving the outcomes; but in the United States there are no effective screening methods and no established programs for prevention or early detection. In addition, the symptoms of stomach cancer are not specific and are common to many gastric problems such as ulcers and gastritis. They include abdominal discomfort, indigestion, loss of appetite, occasional vomiting and a feeling of fullness after eating small amounts of food.
Awareness of gastric cancer, its symptoms and risk factors remains low despite the fact that it is one of the deadliest cancers and the number two cancer killer in the world. Physician and public awareness are critical for early diagnosis. If people are aware of the risk factors and symptoms, they can be diagnosed at an early stage, dramatically increasing the chance for a cure. Two precursors to stomach and esophageal cancers are H. pylori and acid reflux, so be on the lookout. Bottom line: If you are having any type of gastrointestinal symptoms go see your physician for evaluation.
As part of our efforts at Debbie's Dream Foundation: Curing Stomach Cancer, we are celebrating November as Curing Stomach Cancer Month. There are many awareness months in the United States; however, we are taking our efforts and message one step further because most Americans are diagnosed in late stages, so awareness isn't always the answer. We are emphasizing that curing stomach cancer is the end goal for patients, and therefore we have many activities planned for November to help and support patients but to also look toward a brighter future when a cure is found for stomach cancer.
So, how am I doing now? Most days are great except, in order to keep my cancer at bay, I still have Herceptin infusions in the hospital every three weeks, take the oral chemotherapy drug Tykerb nightly, have regular doctor visits and undergo lots of scans and tests. I have a steadfast healthcare team and unwavering support from friends and family. They are with me in my journey to make a difference.
I am beating the odds and determined to continue doing that. My pursuit is to make the cure for stomach cancer a reality for everyone; it's my dream, my personal mission and my legacy. All people should have the right to early detection, intervention and reliable treatment and to hope for a cure for their disease. Our health routine should include endoscopy exams and other screening techniques, increased resources, proven treatments and eventually the resources to find a cure. No one should have to fight this disease alone or without appropriate options. We at Debbie's Dream Foundation: Curing Stomach Cancer are making sure of that!
To join me in making the dream for stomach cancer a reality, take part in our Curing Stomach Cancer Month events.
Debbie Zelman is a Stage IV stomach cancer survivor and founder of Debbie's Dream Foundation: Curing Stomach Cancer (DDF), a non-profit organization dedicated to raising awareness about stomach cancer, advancing funding for research and providing education and support internationally to patients, families and caregivers. DDF seeks as its ultimate goal to make the cure for stomach cancer a reality. If you or someone you know is battling stomach cancer, you can find more information at DebbiesDream.org or by calling toll-free at 855-475-1200 or email to Info@DebbiesDream.org.RELATED POSTS
BY GUEST BLOGGER | NOVEMBER 12, 2013
With limited treatment options and no cure, brain cancer is one of the science and medical world's hardest nuts to crack.
The most common and deadliest form of brain cancer is glioblastoma multiforme, or GBM for short. This particular cancer has for decades resisted the efforts of the best in the biomedical research community, who are always looking for better treatment options for patients.
These efforts include the National Institutes of Health's The Cancer Genome Atlas (TCGA) project, which in 2006 chose GBM as the first tumor to sequence and analyze to better understand the disease. The brain tumor community's successful push to make GBM one of the main focuses of the TCGA was due in large part to the unfortunate fact that there has been little progress in the fight against this tumor over the past three decades; a result of the complexity and aggressiveness of this particular form of brain cancer.
GBM tumors are highly heterogeneous with multiple subtypes, and often a multitude of different mutations and cell types within a single tumor. In addition, the cancerous cells frequently invade other healthy tissue throughout the brain, further illustrating their aggressive nature. Consequently, survival statistics for this patient population are staggeringly low.
And, while the TCGA GBM project netted volumes of important information and data, the big payout for patient care that is desperately needed has yet to materialize.
As a long-time strategic adviser to the National Brain Tumor Society, I joined the organization's executive team, program staff and board of directors, along with other strategic, scientific and medical peers to analyze the current landscape and pinpoint why progress was not happening despite this attention. As a result of these discussions, National Brain Tumor Society created the Defeat GBM Research Collaborative earlier this year.
Defeat GBM is a strategic research initiative, created as a subsidiary of the National Brain Tumor Society, and aims to double the five-year survival rate of GBM patients in five years. To achieve this goal, the initiative will connect leading brain tumor researchers from top cancer institutions, including MD Anderson Cancer Center, Ludwig Institute for Cancer Research and Memorial Sloan-Kettering Cancer Center, in a full-force effort to significantly impact patients through better collaboration, data sharing and a unique scientific plan designed to speed progress.
I was honored to be selected as the scientific director of this initiative to lead a Strategic Scientific Advisory Council (SSAC), comprised of many of the top minds in brain cancer research. Together we will oversee this effort, including charting the direction of Defeat GBM research, reviewing project progress, as well as ensuring investigator teams are working in synergy and achieving key milestones and annual goals.
Defeat GBM was built around the idea of creating a new funding and research model for brain cancer, one which breaks the traditional paradigm of funding single research projects with individual goals and independent aims. Utilizing deep-funding, comprehensive and rigorous contracts with partner organizations, and bringing together researchers that already have a history of collaborating together as the core of the initiative, the Defeat GBM construct is coordinated to rapidly move progress through the initial four complementary projects (within the initiative) that span the drug development pipeline from basic discovery science, through to translational research and pre-clinical drug development, all the way to improving clinical trial design.
If we succeed, we'll be able to quicken the pace of discovery of the right targets, transfer that knowledge to deliver the right drugs to the right subsets of patients, and reach our goal of improving overall survival rates. In addition, we would have achieved this progress in less time and with less financial burden than historically has been the case for brain cancer research and drug development.
Parallel to our Initiative, other exciting efforts combating GBM are happening across the country, which are contributing to the overall knowledge base and field of brain tumor research. For example, a second phase, so-to-speak, of the GBM TCGA project just unveiled its findings this past month (read "The Cancer Genome Atlas exposes more secrets of lethal brain tumor"). The information from this study could provide invaluable information on the genomic alterations that drive GBM tumors and potential targeted therapies. At the same time, exciting efforts are happening in the development of innovative immunotherapies to treat GBM tumors from a number of different researchers and institutions.
Defeat GBM is our contribution to the field. And for those of us involved, an effort to create a collective brain to battle this terrible disease in ways that we have not yet been able to do as individual researchers or institutions. The brain tumor community deserves this concentrated, comprehensive effort, as well as a greater hope for better treatments, and one day, a cure.
W.K. Alfred Yung is the chair of the department of neuro-oncology, co-director of the Brain Tumor Center, Margaret and Ben Love Chair of Clinical Cancer Care, and professor of Neuro-Oncology and Cancer Biology at The University of Texas MD Anderson Cancer Center. He is also a strategic adviser to the National Brain Tumor Society and the Scientific Director of the Defeat GBM Research Collaborative (a subsidiary of the National Brain Tumor Society), as well as the editor-in-chief of the journal Neuro-Oncology and co-chair of the NCI Brain Malignancy Steering Committee.RELATED POSTS
BY GUEST BLOGGER | OCTOBER 31, 2013
Dig out your "Save the Boobies" button, "Real Men Wear Pink" t-shirt and pink ribbon yard stake – it's Pinktober! Unless you've been living under a rock since the first Susan G. Komen for the Cure® (then the Susan G. Komen Foundation) event in 1982, you know October is Breast Cancer Awareness Month.
When I was first diagnosed with breast cancer, joining the pink sea of survivors at Race for the Cure was uplifting and unforgettable. With four rounds of chemo down and two more to go, I held my bald head high as I struggled to walk a mile, arm in arm with my family and friends. Two years later, Mom and I proudly walked 60 miles to cross the finish line at the Susan G. Komen 3-Day for the Cure.
Celebrating as a survivor helped put cancer behind me. Been there, done that. I had survived cancer, and I was moving on with my life. Embracing the "breast cancer survivor" label gave me an excuse to shop for hot pink, this time with a percentage of my purchase benefiting a breast cancer charity.
When we found out last year my breast cancer had returned in my lungs, liver and bones, the same label that comforted me during my initial diagnosis haunted me the second time around. I couldn't even shop for toilet paper during the month of October without being reminded I was no longer a cancer survivor.
Last week a fellow metavivor (metastatic breast cancer survivor) posted on Facebook about "going postal" in line at the post office. When she heard the clerk bragging about dollars raised with the breast cancer awareness stamp, she felt compelled to tell shoppers that while she was grateful for the donation to our cause, those dollars aren't going to keep her alive any longer.
Most people don't know their loved one didn't die from breast cancer...she/he died from metastatic breast cancer--when the cancer cells leave the breast and settle in a critical organ such as the lungs, liver, bones or brain. And even though 30 percent of breast cancers will become metastatic, less than five percent of breast cancer funds are actually directed toward fighting metastatic disease. Because of that statistic, there are a lot of hard feelings about PINK among the metastatic breast cancer community.
As a result, metavivors are advocating for change: we want 30 percent of breast cancer funds directed to fight metastatic disease, because 30 percent of funds should benefit 30 percent of patients.
After much consideration this Pinktober, I have decided to sit on both sides of the fence. I will advocate for change while embracing PINK. I pledge to never again scowl at the football players' hot pink shoes; I will not grumble when a store clerk tries to sell something because a percentage of proceeds benefits breast cancer awareness; and I refuse to scoff at the pink-labeled toilet paper.
Maybe my new perspective stems from believing a positive attitude helps fight my day-to-day battle with cancer, or maybe I'm just riding the high of last month's clear PET scan.(I am officially what some people call "dancing with NED." NED = No Evidence of Disease = WOO-HOO!!!)
Either way, here's the bottom line: I am a 33-year old wife, mom, daughter, sister, niece, cousin, aunt and friend. There are people that depend on me, namely my husband and 21-month old little guy, Henry. They need someone to find a cure in my lifetime, therefore I have to believe PINK will come through for us. Like it or not, the only way we're going to find that cure is by working together. Because we really are all fighting the same two-headed monster.
So just like my favorite pink button says, "Big or Small, Let's Save Them All."
Carrie and her mom, Lana participated in the 2011 Susan G. Komen 3-Day for the Cure.
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY GUEST BLOGGER | OCTOBER 25, 2013
After my wife was diagnosed with breast cancer, I was a clueless husband and an equally clueless dad. I didn't know how best to support my wife (eventually I figured out my job was to shut up and listen to her.) As for our two teenage daughters, they seemed to be doing okay. So while my wife and I made sure to keep them up to date on the medical news, I never asked a simple question: How are you doing?
My wife and I just thought: They're still acting like typical teens: stressed by schoolwork, eager to hang out with friends, perpetually annoyed at their parents. They must be okay.
Now my older daughter Maya and I have written a book for teens coping with a parent's cancer. I've learned a lot about how tough it is for these teens – ready to pull apart from the family and form their own identity, then yanked back into the fold by cancer. Here's what I wish we'd said to our dear teenage daughters:
1. If you have questions, ask them. We can meet once a week, we can put a notebook in the den for you to jot questions in – and we'll answer them. And if we seem too busy with cancer appointments and such, ask Mom's sisters. Either they'll have the answer, or they'll find out.
2. We will probably need your help. Since mom is dealing with treatments and I am her appointment companion, we definitely have less time to keep up household stuff. Sometimes we might ask for help. Sometimes we might forget to ask. If you can offer – I'll do the laundry, run the dishwasher, empty the cat's litter box – we'd be incredibly grateful.
3. You're not doomed to develop breast cancer. Only 1 in 10 cases of breast cancer are due to the inherited genes. So mom's breast cancer doesn't mean you are destined to develop the disease at some point. On the other hand, one in eight women are diagnosed with breast cancer, so you are at risk. And I know this sounds like "a boring lecture from Dad," but healthy living is one way to reduce the risk. Studies have shown that three alcoholic drinks a week raise your risk 15 percent compared to nondrinkers. Smoking and being overweight also up the risk, while four to seven hours of moderate to intense exercise a week will lower your risk.
4. It's okay to be mad at us. Mom may have cancer and chemo may make her feel like crap. But we don't expect you to become perfect angels. "It's a fantasy that people who love each other don't get mad at each other," says psychiatrist Paula Rauch, who runs the Marjorie E. Korff PACT Program (Parenting At a Challenging Time), which provides support for families when a parent has cancer. "In fact, you get mad at people you love because you expect a lot from them." I heard of one newly diagnosed mom whose daughter said, "Now I can't even get mad at you." The mom replied: "You can still get mad at me. Even though I'm going through a hard time, I'm still able to manage that you get mad at me. I'm sturdy enough. It might be hard for me, but I'm still your mom."
5. Let's still have family fun. Cancer may seem to be running our lives for the next few months: doctor's visits, chemo sessions, post-chemo recovery days. But let's grab some fun time anyway. You pick the activity: movie, ice-skating, a hike, a pizza outing. And let's just do it. Hey cancer, you can't be the boss of us!RELATED POSTS