An Interview With Stacy Erholtz On Getting The Measles Vaccine & Participating In Clinical Trials
BY LIZZY SMITH When I first heard of the woman with multiple myeloma who was treated with the measles vaccine and achieved remission when other treatments had failed, I had to learn more. I found her via Facebook and here’s my interview with Stacy Erholtz. I learned a lot; I think you will, too. Lizzy: What was your life like before you were diagnosed? Stacy: I was 40 years old, married and a mom of three children ages ten, eight and seven. I was working at the Grand View Lodge, a place I started working at when I was just 18 years old. In 2003, I left work on a health and wellness mission because I was struggling with chronic fatigue and neck pain. For three years prior, I was exhausted after work and barely able to function. I was diagnosed with multiple myeloma in May 2004. Lizzy: What symptoms and events lead to your diagnosis? Stacy: In 2003, I went to a doctor because of chronic fatigue and neck pain. I was put on Celebrex and told to keep my neck warm. Later that year, I experienced odd symptoms, which included random vomiting, throwing my back out, and chronic neck pain (which I mostly ignored because I’ve had neck problems almost my entire life). In 2004, my health started to deteriorate. I had a sudden onset of carpal tunnel. I had a hard time finding the energy to walk up stairs. My tongue became swollen and I had mouth sores. There was bruising around my eyes and bumps on my eyelids. I slipped on some ice and cracked my spine. I lost 30 pounds in just two weeks. And I was tired all the time. I went back to the doctor, but this time I went to an internist with a great reputation. Most of my symptoms were Amyloid-related and she transferred me to an oncologist, Dr. Yeh. After a 24-hour urine collection test, labs, and a bone marrow biopsy, I was diagnosed with Mayo Bence Jones Myeloma and secondary Amyloidosis. I started taking thalidomide/dex and was sent to Mayo in July 2004. I had a stem cell transplant in September 2004. Lizzy: Did your doctors give you a prognosis? Stacy: I told my doctors that I absolutely do not ever want them to share a prognosis with me. And until recently, I have not pursued much information other than what is necessary. Lizzy: What was your first reaction when you learned you had cancer? Stacy: I was so sick that I didn’t even care. I just wanted answers. Lizzy: What was your initial treatment protocol up until your clinical trial, and how did you responded to those treatments? Stacy: I took Thalidomide/Dex combo and stem cell transplant in Fall 2004. I achieved remission for two and half years. For the next three and a half years, I took Revlimid/Dex combo. For 18 weeks, I took cy-bor-d, Velcade/Dex. I had a second stem cell transplant in August 2012. In May 2013, I relapsed. On June 5, 2013, I had the measles infusion. In March 2014, I had four weeks of mild radiation for two isolated plasmocytomas. Lizzy: How did you handle your treatments, physically and mentally? Stacy: Day by day. There always seemed to be a pattern that would present with each treatment. So knowing what to expect helped greatly. I had good days and bad days. At the onset of my diagnosis, I was really sick, having lost over 50 pounds. I had to crawl up the stairs to my bedroom. I had constant nausea, carpal tunnel (I side effect of amyloidosis). I fell and cracked my spine. I was pretty much bedridden. After my stem cell transplant, I started feeling better. Lizzy: At what point did you consider participating in a clinical trial? Stacy: I initially saw the measles study on the news. Dr. Stephen Russell, who was also my doctor, was working on measles as a treatment and potential cure for multiple myeloma. So from that point forward, I pestered him at every appointment. He couldn’t divulge much more information because of conflict of my being his patient. As time went on, I could see his demeanor changing. I always knew in my heart that I would undergo this treatment. It was just a waiting game. Leading up to that, in May 2013, I had run through all approved treatments. The measles study wasn’t getting much patient attention so a dose was ready and waiting. Lizzy: Tell me more about the trial. Stacy: To get FDA approval for the massive measles vaccine study, they first started at super low doses. By the time I got the vaccine, it was 11.2 = 10 to the 11th power of measles (100 billion measles), second patient. 11.5 responded as well. She has since relapsed. Lizzy: Another testimonial for the importance of being an informed patient, aggressively advocating for yourself as a patient, and being willing to participate in a clinical trial. Stacy: Absolutely! Lizzy: Going into the trial, were you nervous? Stacy: I couldn’t wait, I was so excited! I was infused two weeks after signing up. Memorial Day got in the way or it would have been faster. Lizzy: Tell us about the day of your infusion. Stacy: At eight o’clock in the morning, I was at St. Mary’s hospital for the 30 minute infusion. We stopped for about ten minutes because of a severe headache and dry cough. We added Benedryl and finished the infusion. All was fine. Two hours later, I had a complete riggor temperature of 105-degrees Fahrenheit and vomiting. Eventually, I passed out, woke up the next morning, and walked across the street to my hotel. It was literally one day of feeling awful and that was it! It was a piece of cake compared to all the other treatments I’ve had since diagnosis. For the next few months, I traveled back and forth to Mayo for scans and observation until I was “cleared.” Before the treatment, I had a plasmacytoma on my forehead that was the size of a golf ball. Within 36 hours of receiving the treatment, it was gone, so we “knew” it was working. Lizzy: How did you feel prior to this treatment? And how do you feel today? Stacy: I had my second transplant in August 2012. It was an easier recovery because I was healthier going into it than I was for my first transplant. I was actually feeling great. I was presenting with my recurring plasmacytoma. But I hadn’t been on any drugs for months. I had no other symptoms. Today, I can say that I don’t remember ever having this kind of energy! I feel like I am catching up, living in the moment, and sharing my experience of strength and hope. I am raising awareness for virotherapy. My youngest child is a senior in high school and I’m active with school stuff. I am also active in my church. Lizzy: Was this the first trial you participated in? Stacy: I had participated in trials and studies where Mayo collects extra blood and bone marrow. But never a drug trial, although they offered me as a choice when they presented the measles trial information to me. I didn’t even pay much attention, I simply said, “I’m doing it!” Lizzy: Are you currently in remission? Stacy: I am in stringent complete remission as of my last check-up in September. This past March 2014, however, need three weeks of radiation. But, there was no evidence of multiple myeloma in my bone marrow, just isolated tumors! Lizzy: Are you on any kind of myeloma drugs today? Stacy: None! Lizzy: Do you feel your body has healed from myeloma? Stacy: I believe I have residual effects of Dex—bloating and bowel issues. I am slow moving out of bed in the morning and have stiffness. I had some neuropathy but it is improving. I am terribly out of shape and need to get on that. Lizzy: How often do you get labs and check-ups? Stacy: Every three months. Lizzy: How has your battle with myeloma changed you as a person? Stacy: It has reinforced the need to live in the moment, to be present. Lizzy: Going back to the measles trial, what is the next phase for it? Stacy: I believe it’s proving that the vaccine really works. Once proven, I believe they will work to add drubs to get a patient in a state of low antibodies. They are selecting patients with antibodies like mine, which is basically none. Currently, the holdup for moving forward faster is the production of the quantities of measles vaccines needed. It takes three to four months to make three to four doses. Mayo is the only place doing this treatment and they have outgrown their lab. It will cost $30-40 million to get a sizable lab to produce the vaccine on a larger scale. Thus, my foundation, Let’s Go Viral (www.viralvillage.org) is raising awareness and money to eliminate this bottleneck. Fortunately, measles is proving effective as a treatment in other cancers, as well, like neck, brain, and ovarian. I believe this is the next best way to treat and beat several cancers, not just multiple myeloma. Lizzy: Any advice for other myeloma warriors? Stacy: Live in the moment, even if it sucks! Don’t live by what the Internet says. We are all different. In fact, multiple myeloma in a patient changes daily. I live by faith and the joy that accompanies that faith. Strange as it may sound, this has been a journey and a blessing.