Although 19,000 people are diagnosed with MDS in the United States each year, it continues to be a disease with an identity crisis. Sometimes mistaken for Muscular Dystrophy, Myelodysplastic Syndromes has only relatively recently been classified as a cancer of the bone marrow and blood. Indeed, for years, those diagnosed with MDS were often told they had a “terminal” illness: doctors didn’t always know how to label it, let alone how to cure it, with the exception of a dangerous and often unavailable, bone marrow transplant. Little understood and far more common than people realize, MDS must step out of the closet and into public awareness.

When I was diagnosed with MDS in 1999, I was given just two years to live. Safe to say, this catapulted me into an identity crisis of my very own. Due to the potentially lethal risk of infection from my patients, I now had to consider abandoning my career as a successful surgeon, one that had brought me great personal and professional fulfillment, and helped thousands of patients. For years, I had been in a ‘helping profession,’ and now I was the one who needed help. An avid marathoner, I could no longer run long distances; my physical stamina was no longer something I could take for granted. Over the years, my MDS diagnosis has forced me to make many other life adjustments and compromises. It has also challenged me to find new ways of thinking about the disease, how to treat it, and how to thrive in spite of it.

Every three minutes someone will be diagnosed with some form of blood cancer, and every 10 minutes someone will die from it.

I have now lived with MDS for 15 years, and although the doctors who have treated me are both confounded and pleased at my survival, the journey has not been easy and it has required me to constantly think outside of the box. This has resulted in my developing a treatment protocol that I believe saved my life and may be of benefit to others. Of course, “gold standard” testing on the protocol must first be done before prescribing it routinely.

For me the first telltale sign that something was wrong was fatigue. Although as a surgeon I was accustomed to the pressures of the operating room and a highly demanding schedule, I had always had a lot of stamina and energy, and enjoyed rising to new challenges. A veteran of 13 marathons, I was in excellent shape. But in the fall of 1999, I just couldn’t seem to shake unremitting weakness and fatigue. I also couldn’t shake the sense that something was terribly wrong. In early November 1999, I was checked into the hospital for a bone marrow biopsy.

Bone marrow is the soft, spongy tissue inside our bones. It is responsible for producing red and white blood cells, as well as platelets. Each of these cells has a very specific and important function in the body. Red blood cells, the most plentiful in the body, contain a special protein called hemoglobin, which helps carry oxygen from the lungs to the rest of the body. When there is a deficiency in healthy red blood cells, anemia and fatigue can result. White blood cells are critical for fighting illness and infection, while platelets help our blood to clot when we get a bruise or a cut.

With MDS, the blood forming cells in a person’s bone marrow slow down or even stop, leaving the marrow unable to make enough mature, healthy blood cells. One or all three of these blood cells may be affected. In my case it was the white blood cells that were compromised. I had to give up my surgery practice, not because I was a threat to my patients, but because the exposure to sickness made me very susceptible to infection, which could be lethal. MDS patients like me whose white blood cells are affected get sick frequently, and we need antibiotics and other medications to fight off chronic and potentially life threatening infections.

Most of the time we don’t know how people get MDS. It is not inherited and it is not contagious. It is said to be idiopathic, meaning that in most cases there are no known causes. But, fortunately we do have a lot more information about the disease now. We know that it more typically affects people over the age of 55. However, it has been known to affect children as young as two years old. We know that MDS has a higher frequency in people who have already been treated for cancer. Robin Roberts is a good example of this. A popular anchor on ABC’s Good Morning America, Ms. Roberts developed MDS in 2012, five years after she had been diagnosed and treated for breast cancer. Fortunately she was able to obtain a “perfect” match from a relative for a successful bone marrow transplant. MDS that develops after use of chemotherapy or radiation is called “secondary MDS.” There is also growing evidence of a link between MDS and long-term exposure to toxic industrial chemicals such as benzene.

I’ve often speculated as to what might have caused my particular brand of MDS. Years before, I may have been exposed to highly toxic fire retardants as a forest ranger. I was also often exposed to x-ray radiation while employing fluoroscopy during surgery. Although I wore a lead shield, my arms were unprotected. In addition, I sometimes wondered, had I damaged my immune system by burning the candle at both ends for too many years? The reality is, I just don’t know with certainty what might have caused my illness.

The only known “cure” for someone diagnosed with MDS is a bone marrow transplant. But this requires a perfect blood match. Unlike Robin Roberts, who was perfectly matched with her sister, I had no match in my family. This is not unusual. Between 70 and 80% of those with MDS do not have anyone who is a match. I tried—unsuccessfully—to find a match through the National Marrow Donor Program. Meanwhile, I was getting sick and sicker. Because of my age and physical vulnerability, even if a match had been found I would have only had an 18% survival rate.

That’s when I embarked on a quest to find something that might save—or at least extend—my life. I began to explore some non-traditional routes of treatment. My treatment protocol was not always orthodox, but the most meaningful discoveries in medicine rarely are. What I found most beneficial was a blend of conventional Western medicine with “complementary” therapies. I embraced traditional supportive treatments, such as antibiotics, when I got sick. Under the careful eyes of several physicians, I took Human Growth Hormone and testosterone injections to help boost my immune system. I thought this would buy me more time. I continued to research and eventually take a wide variety of supplements that have been shown to have anti-oxidant, anti-inflammatory, and anti-neoplastic (i.e. anti-cancer) benefits—based on hundreds of research studies, albeit relatively few have been done on humans in controlled, double-blind, gold-standard fashion.

In 2014, I wrote Nine Lives, A Story of Survival and Hope, an autobiography detailing the challenges and triumphs of my life and, in particular, my struggle with MDS. It is my hope that the protocol I describe in the book will be studied using the “gold standard” model of double- blind, placebo-controlled, randomized studies, and that it will provoke more interest in this disease and inspire others to find solutions under a physician’s guidance that work for them.

I support the work of the City of Hope, a Center of Excellence in the treatment of MDS. City of Hope is committed to providing compassionate care for patients with MDS and other blood cancers. As Dr. Alexandra Levine, Chief Medical Officer at City of Hope, says:
 
“Patients diagnosed with this disease may not know where to turn for information and support. We commend Dr. Nemiroff’s efforts to raise awareness about this disease and offer hope to the thousands diagnosed with MDS in the U.S. each year.”

I also respect the work of the American Cancer Society, the Aplastic Anemia/Myeldodysplastic International Foundation, and the Myelodysplastic Syndromes Foundation, all of which were established by an international group of physicians and researchers to provide an ongoing exchange of information relating to MDS. I believe they will be instrumental in finding a cure for this disease that is not limited to dangerous bone marrow transplants.

I am not receiving any profits from the book and the publisher is donating a portion of the proceeds from the sales of the book to MDS and Cancer research.

If you or someone you love has been diagnosed with MDS, please consider taking these steps:

  1. Read everything you can about the disease. The City of Hope website is a good place to start—www.cityofhope.org/myelodysplasia. The American Cancer Society has a lot of good information (http://www.cancer.org/cancer/myelodysplasticsyndrome), as does the MDS Foundation (http://www.mds-foundation.org), and the Aplastic Anemia and MDS Foundation http://www.aamds.org/.
  1. Get a second, third, even a fourth opinion. It is very important to get more than one point of view about your prognosis and treatments. Obtaining a second opinion on the pathology report from a bone marrow biopsy can be very important as well.
  1. Bring a family member or friend to the doctor’s office with you. No one can prepare for a cancer diagnosis, and when patients hear the words, “You’ve got cancer,” their brains shut down. It’s important that you have someone with you who can take notes, ask the right questions, and support you when you are facing that most vulnerable moment of diagnosis.
  1. Seek treatment from those centers that specialize in MDS. MDS Centers of Excellence have particular experience in this disease, and have dealt with hundreds of cases over the years.
  1. Always get the counsel of qualified physicians when designing your MDS protocol, and always be monitored closely by them. Consider asking them about the potential benefits of “complementary” therapies such as supplements.

Paul Nemiroff, PhD, MD, FACS is a nationally recognized surgeon who received his MD from UCLA and holds a PhD from Purdue University. He has published and presented hundreds of articles and research papers on surgical techniques, hyperbaric oxygen, and complementary medical therapies. He has performed more than 10,000 surgeries, and scored highest in the country on the Head and Neck Surgery Exams (99%). He’s an award-winning TV medical correspondent and recipient of many national awards, including one from the American Cancer Society. He is a Fellow of the American College of Surgeons. Dr. Nemiroff was invited to the White House and considered a candidate for Surgeon General of the United States. He has been living with MDS for 15 years. To read more of Dr. Paul’s story, please see http://drpaulspeaks.com, or go to http://www.amazon.com (search under Nine Lives/Dr. Paul Nemiroff).