BY JOANN MCNEIL My name is Jo Ann McNeil and I’m a 9 year Multiple Myeloma survivor. I was diagnosed with MM in October 2006 at 43. I was having severe back pain and was sent for an MRI. The MRI showed I had 2 compression fractures in my spine, which were caused from tumors. Further testing confirmed I had Multiple Myeloma. To say I was confused, frightened and overwhelmed by this news is an understatement. At that time my 3 children were in 4th, 7th and 9th grade. My greatest fear was that I wouldn’t get to see them grow up. At first I was being treated for the Myeloma at the hospital I was diagnosed at which specialized in spines. They were giving me Zometa and then sent me to another hospital for radiation on the tumors in my spine. After they gave me a treatment plan (which was to take Thalidomide) I took the plan with me for a second opinion. I went to Massachusetts General Hospital in Boston and showed the oncologist there the plan the other hospital was offering me. She suggested I go on a clinical trial at MGH instead which included Velcade, dex, and lenalidomide followed by an auto SCT. I chose to go this route. I did the trial and had my SCT in September 2007. I stayed in remission until May 2010 at which time my oncologist put me on Revlamid. I stayed on Rev until April 2014. In April 2014 I went on another trial of Pomalidomide, ACY1215 and dex. In April 2015 I had to change again and am currently on my third trial, which is to take Carfilzomib and dex (I got randomized to the arm that doesn’t include the research drug ARRAY520, however, if my disease progresses I will crossover to receiving the ARRAY520). Since my diagnosis in 2006 I’ve changed and grown in many ways. Strange that positive can come from such negative. But the truth is, I’m happier now. I live in the day and stay hopeful that a cure will be found soon and I’ll be cured. I stay connected about current research through reading and social media but I try not to let it be the sole focus of life. I’ve been blessed to see my 3 children graduate High School and attend college. Life isn’t always easy with this disease but today life really is sweet. I’m still here and plan to grow old with my family and friends! I donate to the MCRI and other organizations that need funding to find a cure for Multiple Myeloma. I try to bring as much awareness about MM as I can. I love the MCRI because they are doing so much to bring awareness, education and most importantly trials that hold a potential cure. I enjoy listening to their interviews with doctors who explain things in ways I can understand. There is so much hope at the MCRI and I always feel uplifted after visiting their website. So for today all is well. Jo Ann McNeil Wilmington, MA
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.