Birthdays are a time for celebration as we become one year older, wiser, and more mature. For cancer survivors, we carry with us another date that symbolizes even more. This is our second birthday. Similar to an actual birthday, this day often carries feelings of even more nostalgia and remembrance. However, it can also grip us with feelings of dread, anxiety, and even post-traumatic stress disorder (PTSD). No matter how far along we are in our journey through survivorship, our second birthday pulls at us to stop and compassionately remember all that we’ve been through.
Marking the milestones
As a four-year multiple myeloma survivor at just 26 years old, I have accumulated many of these second birthdays. The day I was diagnosed, the day chemotherapy began, or the day I received a stem cell transplant. For a while, I thought that June 23, 2014 was my second birthday due to the fact that my immune system was literally starting over as I laid in figurative and literal isolation for three weeks. Since then, all the shots that I got as a baby and young child, were administered to me once again over the duration of a few years. June 23, 2014 is the day that marks my survival and remission. There is one more day that marks the moment I feel like I got a chance for a re-do.
After several years of debilitating hip pain caused by a fist-sized plasmacytoma that created a hole in my hip, I decided that the only way for a fresh start on my young adult life was to receive a hip replacement. I had that done a year and a half ago. On July 13, 2016, I woke up from surgery and almost instantly began to tear up. The pain that had caused so many setbacks and hardships was gone. In its place was an impressive battle scar that signified how much I had endured.
New hope for the future
As I laid in bed-rest over the next month, the sparkle of hope and optimism returned. I remember the very moment that this happened. Until this second birthday, all I really focused on were the negative aspects of my diagnosis. Anxiety, depression, hair loss, substantial weight gain, breakups, inability to hold down jobs, PTSD – you name it. But I felt that this new hip was the greatest gift I could ever receive. It represented more than just a new prosthesis, it represented hope.
I began to write down goals, and envision the type of life I wanted for myself and future self. The goals that I wrote down are all coming to fruition because I made a choice. While my life hadn’t turned out the way I planned, I had the opportunity to create a new story. A story that has led me to my girlfriend, begin a profession in medical device sales, and to become connected with an incredible organization like The Leukemia & Lymphoma Society (LLS). Don’t get me wrong, it took time and patience. But because of all the pain and suffering I had already gone through, I knew the worst was over.
Choosing to celebrate
You have that choice too. While it is inevitable that your most significant days as a patient typically are accompanied with loneliness and fear – fear of what you went through and what you may still be going through – the second birthday should be your greatest weapon. Anything you could ever wish for has already begun to formulate on that specific date and is within your reach.
How is this done? One thing I slowly started doing more of was not comparing myself to others around me, or to myself before cancer. In doing so, you will gain momentum and embrace the fact your second birthday is something only YOU have. I understand how difficult it can be when that day of impact happens, to feel the saddening emotions of cancer’s impact, but instead what about what it did for you? How is it going to shape your life from this moment on? Being diagnosed with a rare form of blood cancer has made me appreciate the fact that I am alive and growing in ways I could never imagine. Sometimes I want to reach out and give my younger cancer self a hug and say: “It’s going to be okay. As dark and auspicious as this is looking right now, you have a chance for a new beginning. And not everyone can say that.”
Hear more about Ethan’s story over at The Bloodline with LLS, a podcast for patients and caregivers.
An exciting scientific discovery, originally found through blood cancer research, makes headlines when researchers uncover new implications for cardiovascular disease.
The Leukemia & Lymphoma Society (LLS) is laser-focused on finding cures for patients with blood cancers. But did you know that the research we support has far greater reach? In fact, many of the therapeutic advances that occurred first in blood cancer are now helping patients with other types of cancers and serious diseases.
For example, the first genetic therapies using a patient’s own immune cells to seek out and destroy cancer cells were FDA approved for two types of blood cancers last year, ushering in a new era in cancer treatment. Now these therapeutic approaches are being explored to treat breast, lung, pancreatic and a variety of other solid tumors.
Today, The New York Times highlighted a fascinating scientific discovery that was achieved with significant support from LLS, and is a prime example of how the work we do has implications beyond blood cancers. Let’s take a look at what this discovery means for patients:
What’s the latest news?
The discovery shows that patients with a specific collection of mutations in their bone marrow stem cells – called clonal hematopoiesis of indeterminate potential – or CHIP for short – may be more prone to developing leukemia later in life. But an even more surprising finding, and the focus of The New York Times piece – is that these same mutations are also found in patients who develop cardiovascular disease. In fact, the risk of heart attack and stroke for these patients increases by 40-50%, compared to those without these mutations. Moreover, other studies demonstrate that these mutations are not only associated with cardiovascular disease, but can cause this disease.
LLS grant recipient Benjamin Ebert, M.D., P.h.D., chair of medical oncology at Dana-Farber Cancer Institute, who studied CHIP in blood cancer patients, was among the first to discover the link to cardiovascular disease. His discoveries have been published in several articles in The New England Journal of Medicine, and he was recognized with a prestigious award at the American Society of Hematology annual meeting last December.
Why is this discovery important?
This discovery is groundbreaking for the cardiovascular medical community. But it is important also for hematologists – doctors who study and treat blood cancers. For the most part, there is no screening test for blood cancers, like the PSA (prostate-specific antigen) test for prostate cancer or the mammography for breast cancer and, therefore, no means of prevention. Identifying the presence of CHIP might help doctors develop prevention strategies for patients who have the potential to develop acute leukemia, cardiovascular disease and other diseases such as diabetes and skin diseases later in life. The mutation may be implicated in other inflammatory diseases as well.
Ebert’s focus on genomics is aimed at understanding how early precursor diseases can lead to more serious, full-blown types of cancers, and which mutations can predict good or bad treatment outcomes, so researchers can develop more effective treatments. His work has been supported by multiple LLS grants since 2012. Another doctor cited in The New York Times article, Ross Levine, M.D., at Memorial Sloan Kettering Cancer Center, also a long-time LLS grantee, has opened a CHIP clinic at MSK to study the mutation as a risk factor for developing leukemia. Dr. Levine and colleagues have shown that presence of CHIP in patients with solid tumors is associated with an increase in secondary blood cancers as well as worse patient outcomes.
What’s the key takeaway?
This latest news reinforces once again that funding the study of the blood cancers can lead to advances in the science and treatment of other types of cancers and serious diseases.
Please consider making a donation to LLS to help us advance more groundbreaking science.
Certain patients with chronic myeloid leukemia (CML) who take nilotinib daily may have achieved such deep remissions that they may be able to stop their treatment, according to a recent FDA decision
When the targeted oral therapy, imatinib (Gleevec®) was approved by the U.S. Food & Drug Administration (FDA) in 2001, it revolutionized treatment for patients with chronic myeloid leukemia (CML), turning an almost certain death sentence into a chronic disease for most patients who receive the diagnosis. LLS played a significant role in the drug’s discovery and development, funding the preclinical and clinical research of Brian Druker, M.D., whose work led to its approval.