Multiple Myeloma- Dancing In the Rain with MyelomaTeacher

Recently, I had the privilege to travel to New Orleans to attend the American Association for Cancer Research’s (AACR) Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved Conference. I was part of the  Scientist-Survivor Program   (SSP) – a program I would highly recommend to anyone considering advocacy work. The purpose of this conference was to advance the understanding of and ultimately help eliminate the disparities along the cancer continuum.  What are Cancer Disparities?  Although cancer effects everyone in the United States- old/young, rich/poor, fit/unfit, male/female and all races and ethnicities certain groups of people have a higher  incidence and  prevalence   for a particular type of cancer, higher rates of complications associated with their cancer treatment, higher death rates and are diagnosed at a later stage compared to other groups. Disparities are typically related to certain rac...

We all have different personality traits.  Some of us are introverts while others are extroverts. Some of us are carefree while others are more serious. Some of us are nurturers while others graciously receive gifts of help. I would classify myself as a nurturer. I receive joy when helping others. It is in giving that we receive.  I receive so much positive energy from helping others. Helping others re-energizes me.  This summer I traveled to Peru as part of A Fresh Chapter's Peru Odyssey Program .  A Fresh Chapter is a non-profit dedicated to healing the emotional scars of cancer. A Fresh Chapter combines domestic or international volunteerism with programs designed to reframe adversity, foster connections, and promote personal growth and development. A Fresh Chapter's  vision is a world where our experiences with cancer empower us to seek new purpose and possibility in our lives. My volunteer assignment was helping at Martincitos the senior center l...

Can Adversity be a good thing?  Can it be a catalyst for change?  Hell YES!”  (A phrase that has become a part of my vocabulary since I met my dear friend Terri Wingham, founder of A Fresh Chapter, this summer.) Being diagnosed with Multiple Myeloma, an incurable blood cancer, at age 49 was a devastating event. At the time of my diagnosis I was in disbelief. After reconciling the initial period of denial fear crept in. I was feeling sorry for myself, but I felt devastated for my family who I believed would be without a wife and mother in just a few years. I began preparing for my death by getting my affairs in order, writing letters and planning family vacations to places like Disney and Las Vegas in hopes of making lasting memories. Memories I hoped my family will cherish once I was gone. But as I was preparing for my death I began living.  I was now doing things I always seemed to put off in the past. I was living in the moment and enjoying life. Thanks to adv...

Can my trip to Peru with A Fresh Chapter be about a week away?   I am filled with mixed emotions.  I am both excited and scared.  I am looking forward to a new adventure, but I am dreading packing for this adventure and the long travel itineraries that I will be doing solo.  I am anxiously anticipating my volunteer assignment, but I am feeling uncertain I will be able to make a difference especially since I don’t speak a word of Spanish.  I feel excited to be making new connections, but worried I won’t remember anyone’s name.  I am eager to have an opportunity to experience a new culture, but nervous that I will get sick.  The list goes on and on. PREPARATIONS I have prepared for the Peru Odyssey by filling out forms, buying supplies, getting vaccinations, reading travel guides and speaking to others who have been on this life changing experience.  I even downloaded Duolingo to try to learn some Spanish.  But the best way I prep...

Only Your Genes Will Tell By Cynthia Chmielewski Molecular Groups of Multiple Myeloma Multiple Myeloma is a cancer of the plasma cells found in the bone marrow. We now know that Myeloma is not a single disease. Researchers have identified several molecular subtypes. During the last 15 years, numerous studies have pointed out the heterogeneity of both the phenotype and chromosomal abnormalities of multiple myeloma. 1   Using Gene Expression Profiling of 414 newly diagnosed patients, Zhan   et al.   have proposed a molecular classification of multiple myeloma into 7 groups. Read on to discover how to determine to which molecular subgroup of multiple myeloma you belong and why it’s important to know that information. One Size Fits All Until recently there weren’t many treatment options available for individuals diagnosed with myeloma. Patients were prescribed the treatment that showed the best efficacy when tested in the general myeloma population. ...

Myeloma warrior, fierce advocate and my friend Lizzie passed away yesterday. I am still shocked and saddened by this news.  Lizzie was young. She was a fighter and well educated about myeloma. Lizzie was full of life! She sought the advice of several myeloma specialists and participated in clinical trials. She ate healthy and exercised. She did everything right. How can she be gone?  Lizzie's myeloma was aggressive and didn't respond well to treatment. No matter what protocol Lizzie tried her myeloma returned often with a vengeance. Although a lot of progress has been made in the last decade in understanding the biology of myeloma and developing new therapies to treat this cancer, more research is needed to help researchers fully understand the various subgroups of myeloma and how to best treat each unique subgroup. We must do more so people diagnosed with high risk myeloma live long lives and die of old age.  How can we do more?  We can use ou...

Once is a blue moon an event occurs that transforms your life into one with greater meaning and satisfaction.  This year I attended the American Association for Cancer Research's  (AACR) Annual Meeting in San Diego. I was selected to be part of the AACR's Scientist-Survivor Program (SSP). Attending this event was that life changing experience. Before arriving at the Scientist-Survivor Program I called myself an advocate, but I really didn't have a clear understanding what that entailed. I know an advocate is someone who supports a cause or idea.  Advocates speak out on issues that they care about and offer ways to improve upon them. But the concept of advocacy was still confusing to me. When someone would ask me to describe my advocacy work I didn’t know where to focus my response. Many people are referred to as advocates, but they seem to be doing a lot of different things. Why were they all called advocates?  When I attended the opening session of the SSP pro...

I recently attended the Cancer Moonshot Summit held at Howard University in Washington, DC.  A lot of talk at the summit revolved around Precision Medicine. Last year, President Obama announced the launch of the  Precision Medicine Initiative  (PMI) – an effort to accelerate a new era of medicine, focused on delivering more tailored health care. We are already using precision medicine in some areas of healthcare.  If you need a blood transfusion your blood is typed prior to the transfusion and you are given the exact match based on that result.  If you need to wear glasses you are given a prescription based on your current eyesight. Precision Medicine and Myeloma I am one of the few old-timers that still wear hard contact lenses. My prescription is not only based on my eyesight, but my eye care practitioner measures the exact shape of my cornea and prescribe lenses with the curvature, size, and corrective power that suit MY particular eyes. But in...

Helen Keller's quote, "Alone we can do so little, together we can do so much" seemed to be the resonating theme of the Cancer Moonshot 2016 Summit in Washington, DC. I was fortunate to have the opportunity to sit side by side with hundreds of researchers, oncologists, nurses, government officials, data scientists, technology experts, advocates, care partners and fellow patients at the first ever Cancer Moonshot Summit held at Howard University in Washington, DC. #CanServe was the appropriate conference hashtag.  I left yesterday's summit invigorated, inspired, hopeful and valued. I believe EVERYONE in the United States can help with the Cancer Moonshot Initiative thus becoming a source of national pride. Cancer Moonshot was first announced in President's Obama's final State of the Union Address in January and has become Vice President Biden's personal mission. He vows to stick with this initiative even after he leaves office. Moonshot aims to make more t...

Seven years ago I was diagnosed with Stage 3 IgG kappa multiple myeloma. I started the recommended treatment protocol immediately without asking my hematologist any questions. Unfortunately, I stopped responding to my induction therapy after only 3 months. A third drug was added to my chemo cocktail as a prepared to have a stem cell transplant. The stem cell transplant failed to put me into any kind of remission. I was devastated and hopeless. I retired from my teaching profession to focus on getting my myeloma under control. Fortunately consolidation therapy after my stem cell transplant and ongoing maintenance therapy has kept me in a very good partial remission for the past several years.  Since my diagnosis I learned how important it is to educate yourself about your myeloma, find support and make sure you are actively engaged on your healthcare team. My learning and support began right here at the Philadelphia Multiple Myeloma Networking Group. The PMMNG gave me the foundation...