Why I chose a multiple myeloma clinical trial

What do you do when your body doesn’t respond to physical training in the same way it did just a few years ago? How do you react if you feel pain in your rib cage, yet X-rays show no fractures?

These are some of the questions I was asking myself in 2013. Early that year, I was training for a two-day, 150-mile cycling event, but it didn’t seem like I was getting any stronger.

Throughout the summer and fall, I’d also been experiencing rib pain, and I suffered a sharp back pain while helping a friend move furniture.

My multiple myeloma diagnosis

The rib pain was initially diagnosed as costochondritis, a cartilage disorder that can cause significant discomfort around the sternum. I’d had a weak back for years, so muscle strains and back pain were nothing new. I chalked them up to getting older.

Still, this pain was a little different, and by the end of November 2013, I’d had enough. I was tired and in nearly constant pain. Blood tests showed moderate anemia and high levels of protein, but were otherwise inconclusive. My doctor ordered more extensive blood tests.

While waiting for the results, I started looking online for potential causes of my symptoms. One was multiple myeloma, a rare cancer that typically affects men in their 60s. Only about 1% of patients are younger than 40 when diagnosed. Since I was only 38 at the time, I figured my odds of having multiple myeloma were similar to my odds of winning the lottery.

Exceptional diagnosis calls for exceptional care

Unfortunately, the second round of blood work showed I’d defied the odds: I had multiple myeloma. I was stunned. I grasped that my doctor was referring me to someone, but I missed most of the details.

Once I could think straight again, I realized that winning this type of lottery meant I needed to be treated at the nation’s premier cancer center, MD Anderson.

Luckily, because I live in a suburb just north of Houston, my doctor referred me to Douglas Nelson, M.D., a physician at MD Anderson in The Woodlands.

Finding joy despite a cancer diagnosis

My first visit was a whirlwind of activity. My wife and I met with Dr. Nelson and his staff. Then I had a bone marrow biopsy and all the other diagnostic tests necessary for a formal diagnosis.

With the holidays coming up, Dr. Nelson told us to go ahead and keep our travel plans. I could begin my multiple myeloma treatment when we returned in January. Of course, enjoying a trip after receiving an incurable cancer diagnosis is easier said than done. But we tried not let the news ruin our celebration.

Why I chose MD Anderson

One of the reasons I chose MD Anderson is that I knew I had more treatment options there than I would have at other hospitals.

At MD Anderson, I received a relatively new multiple myeloma chemotherapy regimen before it became the standard of care. It was a 21-day cycle which consisted of one Revlimid (lenalidomide) capsule for 14 days, four Velcade injections over the first 12 days and two dexamethasone tablets taken in conjunction with each injection. Then, in April 2014, I received an autologous stem cell transplant.

After that, I was given a choice: I could restart my induction therapy protocol, begin a typical maintenance therapy protocol or join a Phase II clinical trial under Robert Orlowski, M.D. The trial was for a potential new maintenance therapy involving a medication then known as “MLN-9708,” or ixazomib.

I opted for the clinical trial. And while I do have a few lingering side effects — mainly mild neuropathy, muscle fatigue and digestive upsets — they are totally manageable and not significantly different than what would be expected with traditional maintenance therapy. Best of all, I have seen no disease progression since starting the clinical trial.

Today, I am living a nearly normal life, even with an incurable cancer. And that is what’s most important to me, my wife and our children.

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