Multiple Myeloma- Dancing In the Rain with MyelomaTeacher

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 our voices to debunk the com

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 program a

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 cancer, until recently, treatments wer

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 I n

On the third Thursday of each month I sit on UPenn's Institutional Review Board.  I am the non-scientific, unaffiliated member of the board.  My job is to be the secondary reviewer on initial protocols brought to the table. I provide the voice of the patient.  I believe its a very important role, Doctors and medical professionals can review the safety data and the scientific nuances of each clinical protocol, but only a patient can understand what another patient may be thinking and understanding when clinical trial options are being discussed. The scientific members of the board allow me to speak openly and ask questions, respect my opinions and often thank me for bringing something to their attention that I as a patient would want clarified in the informed consent.  Here is a blog I wrote over a year ago describing my experiences my first day as a voting  board member.  As I was driving down the crowded highway on a rainy Thursday morning I was asking myself- “What did

A lot can happen in three days. I could drive from my home in New Jersey to California in 3 days.  In the New Testament Jesus told the Jewish populace at the Temple, “Destroy this temple, and I will raise it again in three days."  It will take three days to have the hardwood floors in my home refinished. It never occurred to me that when I hung up the phone after chatting with Pat Killingsworth three days ago it would be the last time we would be chatting.  Pat was a blogger, a mentor, an advocate, but most of all a dear friend.  I met Pat several years ago at a Patient Ambassador training and grew to admire him the more I got to know him. Pat's mission was to educate the myeloma community.  He accomplished that and much more through is blogs, books, speaking engagements and his beloved Beach Party. Pat was an unique individual. He put others above himself.  He blogged EVERYDAY. Pat often pushed himself to publish a blog post from his hospital bed, after a long day a

I'm sitting here in a fog.  Everything seems so surreal.  One of my good friends, and most dedicated myeloma advocate I know is fighting for his life.  I feel helpless.  I spoke with Pat Monday night.  I knew he was having some set-backs, but his spirits were good and I thought this was just another detour in the road.  He told me about his kidney failure and how he was going to dialysis almost daily. When I asked him if he watched the Super Bowl he joked that they came to get him for dialysis minutes before the game started so he watched the game hooked up to the dialysis machine. No chili or nachos this year. Then Pat proceeded to tell me that he was having plasmapheresis also know as plasma exchange.  He said that they suspected something called TTP to have caused some abnormality in his blood. The doctors at the hospital he was at were testing for TTP, but started the plasmapheresis since this is how TTP is treated.  Pat joked that the plasmapheresis caused him to be shaky. He