February 24, 2022
Multiple myeloma survivor and employee: ‘MD Anderson really is the best’
BY Steven Champagne
When I was diagnosed with multiple myeloma in October 2009, I knew exactly where I wanted to go for my cancer treatment.
Because with MD Anderson’s help, my late mother astonished everyone by living an additional 15 years with a very rare form of cancer called liposarcoma. And by 2009, I’d been working at MD Anderson for more than a decade — first as a nurse in the operating room unit, later as a nurse in the business office of the Stem Cell Transplantation & Cellular Therapy Center, and finally, as a Physician Relations liaison.
I already knew MD Anderson was great — both because of the positions I’d held and my mom’s experience. But my own experience as a patient at MD Anderson is what gave me a whole new respect for the place. We really are the best. Because what we say we do, we do.
My multiple myeloma symptoms
I had only one symptom of multiple myeloma, though I didn’t make that connection at the time. I felt a burning sensation in my feet for about 2 or 3 years. But I had no other symptoms or complaints. My physician prescribed a drug for nerve pain called gabapentin. It seemed to help.
I only found out I had multiple myeloma after my annual physical in the summer of 2009. My bloodwork showed an elevation in my total protein that my doctor found concerning. She had me come back three months later to recheck it.
Before the results of the second test came back, my doctor told me the protein issue could be caused by one of two things: either multiple myeloma, or a condition called MGUS, which stands for “monoclonal gammopathy of undetermined significance.” The second round of bloodwork showed I had multiple myeloma. I wasted no time in making an appointment at MD Anderson.
How I knew it was time to stop ‘watching and waiting’
At MD Anderson, I met first with myeloma specialist Dr. Robert Orlowski. He told me that at this early stage, the best thing to do was watch and wait. He explained that multiple myeloma has several defining “events,” any of which can signal that the time has come to begin treatment. One of those is a bone fracture, which occurs when cancerous cells form lesions that weaken them until they snap.
That’s exactly what happened to me. I bent down to pick up a pen I’d dropped during a meeting one day and felt a hard “popping” sensation. Severe chest pain followed. I called Dr. Orlowski immediately. He said to come in for an X-ray. Sure enough, I had broken a rib. It was time to start treatment.
My multiple myeloma treatment
At that stage, Dr. Orlowski recommended several rounds of induction chemotherapy to reduce the amount of cancer in my body. Then, I’d have a stem cell transplant using my own cells and begin taking a maintenance dose of a chemotherapy drug called lenalidomide. The goal was to keep me in remission for as long as possible.
I started the induction chemotherapy regimen in July 2010. Dr. Muzzafar Qazilbash performed the stem cell transplant on Dec. 11, 2010. I began taking lenalidomide shortly afterward.
Why we changed my multiple myeloma treatment plan
Overall, my recovery has gone fairly well. I did have a lot of issues with infections the first year after the transplant, but after that, things calmed down. It was smooth sailing for about 10 years.
Unfortunately, myeloma patients never really get off of treatment. So, when my protein levels started creeping up again very slowly a few summers ago, I wasn’t that surprised. We could have waited a little longer before trying something new, but Dr. Orlowski and I decided to go ahead and change my medications in February 2021.
Now, I get injections of a monoclonal antibody called daratumumab once a month at MD Anderson West Houston. I also take a chemotherapy drug called pomalidomide for 21 consecutive days out of each month, then take a week-long break.
How I’ve dealt with multiple myeloma treatment side effects
Today, I can still do almost anything I want, though I remain on three drugs — amitriptyline, tramadol and gabapentin — for neuropathy.
I developed that side effect pretty bad in my feet during induction chemotherapy, and even now, they aren’t back to normal. I still feel a constant sense of tingling and numbness, and occasionally freezing, burning and electrical sensations. As a result, I can’t always walk long distances, and I get a bit off-balance sometimes. But with medication to control it, I feel like the neuropathy is manageable.
My life today, on myeloma treatment
A small amount of protein still shows up in my bloodwork. But Dr. Orlowski says that’s OK, because sometimes you can’t get it down to zero. He noted that myeloma is becoming more like diabetes, in that it’s treated like a chronic disease and managed long-term. Theoretically, I could stay just like this for years. So long as that one protein level doesn’t go up, I’m good. We’ll just keep monitoring it.
Aside from those two things, I’m doing really well. I started traveling again in 2011. And before the pandemic made so many places inaccessible, I was able to take trips to India, Mexico, and 11 other countries. Because I’m immunocompromised, I’ll have to wait for the world to open back up again — and be a little safer — before I can resume my travels. Until then, I’ll continue to see Dr. Qazilbash for my annual checkups, Dr. Orlowski and the myeloma team monthly, and just take each day as it comes.
I’ll also continue to use my experiences at MD Anderson to help me on the job. Because in my role as a physician liaison, I explain to outside doctors how their patients can benefit when they refer them here. I’ve always been able to showcase our multidisciplinary approach — in which medical oncologists, surgical oncologists, radiation oncologists and many other specialists — come together to formulate individualized treatment plans. And with everyone’s high degree of specialization, it’s also easy to highlight our faculty and staff’s expertise.
But now, I can personally vouch for the high-quality of care patients receive at MD Anderson. Because I experienced it myself. And I am beyond grateful.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
What we say we do, we do.