Andrew’s most recent birthday was celebrated in Columbus, Ohio where Patient Power and MMORE (Multiple Myeloma Opportunities for Research and Education) partnered to hold a Living Well with Multi
Andrew’s most recent birthday was celebrated in Columbus, Ohio where Patient Power and MMORE (Multiple Myeloma Opportunities for Research and Education) partnered to hold a Living Well with Multiple Myeloma town meeting for patients and caregivers.
When you’re diagnosed with cancer, your first job, and that of your medical team, is to beat the disease. If it can’t be cured, you bop it on the head and knock it back so you can live your life. I always see that as the “whack a mole” approach. It has worked for me for more than 12 years since I was treated for a blood cancer, chronic lymphocytic leukemia (CLL), in a clinical trial at MD Anderson Cancer Center in Houston. I learned a lot from the experience, and even wrote a book, The Web-Savvy Patient, to help others better navigate the complex hurdles that come with a serious medical condition. Like any cancer survivor my anxiety rose each time I visited the doctor for post-treatment checkups. The great news each time for many years was that there was nothing clinically important to talk about. We’d usually talk more about my doctor’s health than mine! “Oh, how’s your sprained ankle?” or “I hope you’re over the flu!”
That changed for me last fall when a tell-tale component of my blood, granulocytes, was slightly elevated. Did I have an infection? No. Was I getting over one? No. Then what could it be? Blood tests followed in late November 2011. When the results came back I learned I was JAK2 positive.
What??? My doctor explained JAK2 positive is a recently identified genetic mutation. “It means you probably have a myeloproliferativedisorder and scarring in your bone marrow,” he said. Again, I asked what he meant. Myeloproliferative disorders are conditions that cause blood cells — platelets, white blood cells, and red blood cells — to grow abnormally in the bone marrow. He said I would need a bone marrow biopsy to confirm a diagnosis and assess how advanced my condition was. I caucused with my long time physician, CLL guru Dr. Michael Keating from MD Anderson. He said I should come there in a few months to check in with him and meet with their myeloproliferative expert, Dr. Srdan Verstovsek (“Dr. V”).
In March 2012 I made the trip to Houston and the blood tests and bone marrow biopsy confirmed primary myelofibrosis. By then my wife, Esther, and I were in the midst of planning to relocate for a couple of years to Spain. Should we go? Dr. V said yes. He felt I might not need treatment during that time and, if I did, there was another expert, Dr. Francisco Cervantes, right there in Barcelona, to work on my team.
Over the past six months, I have followed the process I described in my book. I set my initial shock aside and got a precise diagnosis. I connected with a community of patients with the condition through MPN-Net a resource of ACOR (Association of Cancer On line Resources, www.acor.org) and the MPN Education Foundation. I spoke with advocates at a leading foundation that funds research for my condition, and I met in-person with a patient-advocate for a long discussion over lunch. I also had several phone conversations to learn about the first approved new drug,Jakafi (ruxolitinib)
I also sat down with my trusted Seattle oncologist, Dr. Andrew Jacobs, to take me through my cancer history and review my current status and options. As I have told so many others, to be a “powerful patient” you need to be an educated patient and you need to ask questions of several respected sources. I did that and nowfeel confident and hopeful as I move ahead because the timing of this new diagnosis coincides with the development of powerful new treatments.
I now have an MPN specialist here in Barcelona, Dr. Cervantes. He is terrific. But beyond being a very warm and caring man, he is, like Dr. V, a leader in this field. He confirmed I should start on medicine and gave me reassurance that they are working on more refined treatments and that he is a great person to have looking out for me.
Six months after my “What?” moment, I am confident in my medical team and my own ability to go forward. I have just concluded a trip to the U.S and a second visit to Dr. V. The bottom line is that I am now in treatment for a second cancer, not a recurrence of the CLL which I feared, but something different and out of the blue. Something a lot less common – only 3,000 new US cases a year – and something where I’ll have to take medicine twice every day and hope that blossoming research with additional medicines will lead to another long “whack a mole” story like I’ve had with CLL.
As more of us survive cancer we are learning we may well be at higher risk for a second cancer or maybe even a third. There are many reasons for this. Chemotherapy affects the DNA, and/or our immune system can be susceptible to another cancer just like it was the first time around. We don’t know yet why so many of these second cancers happen. We’ll learn that over time and it may change initial treatments to lower our risk.
I am fortunate because I have been through one cancer already. I “know the drill” of treatment, possible side effects, monitoring and follow-up visits. I also know it can pay off. I have had more than a decade with no medicine and a full life. And, from my personal research, connections with other patients, and my interviews with experts, I fully expect to have many more years ahead of me.
The Patient Power team works closely with many top experts at MD Anderson Cancer Center in Houston. Left to right are: Tamara Lobban-Jones, Director of Strategic Partnerships; Autumn Eadon, Senior Producer; Andrew Schorr, Founder and Dr. Srdan Verstovsek, Chief, Section for Myeloproliferativ Neoplasms, Leukemia Department, MD Anderson
My recent visit to Houston included video interviews with Dr. V and several of his patients and one spouse. I interviewed another expert in Chicago a few days later. We will be stepping up our Myeloproliferative Disorders Health Center on PatientPower.info, in partnership with leading advocacy organizations, and you can be assured I will continue to be an active patient advocate. You can also expect me to be very vocal about second cancers and how we can partner with researchers to lower one’s risk.
I welcome your comments any time, and hope the second shoe never drops on you. If it does, take heart – we thankfully live in a time when medicine is often in an ever stronger position to help us fight back while letting us live a full, productive life.