WHAM! The news I received from my doctor was a left hook to my temple thrown by Muhammad Ali. I was just told that I had myelodysplastic syndromes (MDS). My name is Brian. It was December 2016 and my doctor at Moffitt Cancer Center in Tampa Florida, Dr. David Sallman, sat me down to explain the ins and outs of my specific diagnosis. He mentioned I had hypocellular bone marrow (not enough). He talked about my excessive blasts in my bone marrow (too many). There was mention of insufficient platelets, white and red blood cells (too few). He explained that my MDS subtype was rare (10%-20% of those diagnosed out of 10,000 diagnoses per year in the US). All I remember really at the time was that it was very confusing. Add to the discussion the topic of the “how long do I have” question and it seemed that I was dealt a knockout punch.
Just as a fighter steadies himself after a devastating blow, I paused and tried to shake off the effects. But how? I knew I needed a plan.
First, I needed to follow my doctor’s immediate advice. I was hospitalized for a week and underwent Atgam treatment followed by my taking cyclosporine pills for months. The goal of treatment plan was to suppress my immune system, allowing my bone marrow to “reboot” and begin producing healthy blood cells again. Unfortunately, six months later, we decided to end treatment as my lab test revealed my values had only gotten worse. Although the failure was disappointing, I didn’t let this one round dampen my spirits.
Next, I focused on my training – training to live and thrive with this disease. I knew I needed to read as much as I could about the disease. I obtained additional insights and information from my PCP, nutritionists, pharmacists, mental health professionals and even acupuncturist. I quickly realized that the more I learned about the disease, from symptoms to treatment options, the better.
Knowing that I draw strength from the wisdom and guidance of others, I started an MDS support group in the Washington, DC area. I can’t say enough about how important it is to hear and share with others our twisted and varied journeys.
As of today, my doctor considers me to be “stable but bad.” Fortunately, I am asymptomatic and do not currently need transfusions nor medications. I am on a watch and wait status; watching my lab values and waiting for them to change (worsen) before I can receive my cure, a bone marrow transplant. Right now, the benefits of the transplant outweigh the risks, so I continue to train hard for the future. My training now includes significant exercise in the form of biking, walking and running.
The prospects of my fight with MDS look good. I am still leading my support group and hope to soon start volunteering for outstanding organizations like AAMDS International Foundation and the MDS Foundation. I will have more fights and short-term battles with my disease, that I know. I’ll have days of struggle and pain. However, I see a future where my disease is cured with a bone marrow transplant and I envision new drugs and therapies that will ease worries of disease recurrence, Graft vs. Host disease and other post-transplant complications. Now that I’m active, knowledgeable and engaged I may take a few more punches, but I won’t let this disease knock me down again.
So why share my fight with you? Because I once read a similar story from a teenage patient with MDS who inspired me to fight. If she could overcome her situation, then why couldn’t I? If I had advice to give it is to work with your doctor on becoming as strong as you can physically and mentally, whatever that means for your situation. Enjoy your time with family and friends. Educate yourself on your condition. Volunteer and/or participate in forums and local group activities. Know you will take a few hits every now and then, but you are strong enough to get back up and face your challenges head on. Simply put – train to win! I am going to win my fight, no matter the outcome.
