"I think I feel something," murmured the nurse practitioner during a GI appointment. I was initially there to schedule a colonoscopy. Lying on the exam table I strained my head upward wondering if I could possibly see what she was feeling.
My story begins in 2011, when I was 55 years old. I had been a professional ballerina, blessed with good health and good eating habits.
It was June of 1995. I was about to have a very special week. What I thought was going to be special was that on this particular Monday, my wife Sue was flying to Tallahassee, Florida, to defend her doctoral dissertation at Florida State University.
Ron Ternoway was diagnosed with WM in 2006. After multiple treatments, most with short remissions, in 2014 he decided to participate in a Clinical Trial. Ron has agreed to accept emails from anyone who has questions about his experience. firstname.lastname@example.org
En 2016, un oncólogo le informa a un nuevo paciente, su diagnóstico de Macroglobulinemia de Waldenström (WM). Es probable que añada en rápida sucesión, las siguientes observaciones: " cáncer indolente", "incurable, pero tratable", "observar y esperar estados posibles por varios o incluso muchos, años", "existen muchos nuevos fármacos en preparación y ensayo "," los pacientes pueden sobrevivir durante décadas. "
Bing-Neel is an extremely rare complication of WM. For those who missed the inspirational article about Julie Davidson’s journey with Bing-Neel in the September Torch, you can read it here.
In the mid 1980’s, I began having symptoms that are common to most of us with WM. I saw doctors for seven years before a diagnosis of WM finally was confirmed. But a study of prior blood tests showed high protein levels as early as 1986.
A little over two years ago, I was diagnosed with Waldenstrom’s macroglobulinemia (WM for short). Since then, I’ve been doing a LOT of thinking. Thinking about everything I’ve experienced since that strange day – the fear and pain that came with my diagnosis and subsequent treatments; the joy of feeling my family and friends rally by my side, loving and supporting me in so many ways; and how I’ve been fundamentally changed.
The following is an account of a life journey with Waldenstrom’s Macroglobulinemia(WM)that later turned into WM/Lymphoma (WM/L). My story is aimed at beginning patients, so I will cover the WM episode more thoroughly than the subsequent WM/L. Full disclosure: I am only a novice in medicine, so I may have occasionally included errors in my treatment. Consequently, I have omitted my doctors’ names to avoid having any of these errors attributed to them.
In August of 2012, I was diagnosed with Waldenstrom's macroglobulinemia (WM), a rare lymphoma with only about 1,500 new cases each year. One week after my diagnosis, on my 30th wedding anniversary, I started chemotherapy which lasted for 18 months and consisted of more than 50 infusions.