It’s nothing short of a miracle that I am here today. About ten years ago I was a 40-year-old working mother of three when I started to feel as if something was dreadfully wrong. I was constantly nauseous and overwhelmed with exhaustion. I decided to quit my job and become a stay-at-home mom, but I still wasn’t feeling any better. A few months later I was diagnosed with amyloidosis, a protein disorder. But my internist suspected that something else was going on and referred me to an oncologist, Dr. Yah, who made the diagnosis: I had multiple myeloma, a blood cancer that affects the bone marrow. I can’t say that I was completely shocked. I had been feeling so sick all this time that I knew I was seriously ill. By then I was so drained that I absorbed the information without any emotion. The oncologist referred me to the Mayo Clinic in Rochester, Minnesota, the closest major medical center to rural Pequot Lakes, where we lived. I was advised there by my doctor, Dr. Stephen Russell, to undergo a stem cell transplant. But I simply wasn’t strong enough to endure it, so I was started on chemotherapy instead. After a few months my blood work showed that I was ready for the procedure, which took place in the fall of 2004. The recovery was brutal. It took six months for me to get back to myself. I went into remission, but two and a half years later the cancer returned. I started chemotherapy again, along with a steroid that caused a predictable cycle.
Immediately after the steroid was administered I would feel manic; 36 hours later I would crash and be completely exhausted for two days. The next day and a half I would feel normal, only to go back into the hospital for the next round. For three and half years this was my life. Nonetheless, I never let the “cancer cloud” hang over our house. I didn’t want it to take over my life; I tried to view it as a chronic illness that was just part of our daily existence. My amazing husband was fabulous with the kids, and we had a wonderful nanny who became like family. Thankfully, I went into remission again, and this time it lasted for three and a half years. The next assault involved a 16-week protocol of chemotherapy and steroids that left me feeling depleted and nauseous. Over the next year I made the 45-minute trip to the hospital once a week for an injection in my abdomen, at which point I came out of remission yet again. “It’s time for a second stem cell transplant,” my doctor said. This was an option he had mentioned several times in the past, but I hadn’t been receptive to it because of the traumatic recovery. But now my children were older, and I realized that I was running out of options. Then something miraculous happened. I should point out here that throughout my ordeal I chose not read too much about multiple myeloma. The picture for multiple myeloma isn’t very bright, and I always wanted to be optimistic and hopeful that I’d be cured. But one evening four years ago I was watching the news when suddenly my doctor was right there on the screen! He was describing a research project currently underway at the Mayo Clinic that would inject the measles virus into patients like me as a cure. At my next appointment I asked Dr.
Russell about the trial but he told me that he couldn’t share any information because the study was too new. Well, I wasn’t going to take that lying down so I dug in my heels. By then I had been battling this illness for six years, and this radical new treatment sounded much better than anything I had already endured. I also had an inexplicable feeling that it might work. Over the next few months I kept pestering Dr. Russell until he finally started to soften up. I could see his demeanor change and his excitement build as the study moved further along. However, when I formally asked to be included in the study I was rejected because I hadn’t yet failed every possible treatment option. I was really crushed. I didn’t want more chemotherapy. For some reason, which I can’t really explain, I was very optimistic about the measles treatment, even though I admittedly didn’t know much about it. In March 2013, I learned that I was coming out of remission yet again. There were tumors growing all over my body. I was very emotional in the doctor’s office; my mother and daughter were there with me and we were all bawling. But that was the day Dr. Russell finally agreed that I should try the measles treatment. “Set up an appointment with Dr. Dispeniri,” he said. I did, and this time I wasn’t rejected. Every other treatment option had failed; this was truly going to be a last-ditch effort. I cried tears of joy to have been accepted into the study. I was so happy! I was infused with the measles on June 5, 2013. Although I’d been devastated when I was rejected two years before, in hindsight it was a blessing.
At that point in the research, the doctors weren’t giving a high enough dose of measles; the first patients received one million infectious units, whereas I had gotten 100 billion! That’s enough to vaccinate ten million people! Although I had been vaccinated against measles as a child, the stem cell transplant had wiped out my immune system, allowing the virus to get to work by treating the multiple myeloma tumors as “food.” As it was explained to me, the measles viruses would bind to the tumors and use them as hosts to replicate their own genetic material; the cancer cells would then eventually explode and release the virus. The body’s immune system would then attack any remaining cancer carrying a remnant of the vaccine’s genetic imprint. Antiviral vaccines that have been rendered safe can also be modified to carry radioactive molecules to help destroy cancer cells without causing widespread damage to healthy cells around the tumors. Up until that point only a few people had undergone this experimental treatment. One suffered from a headache, one complained that her arm had swelled up, and another had gotten a rash. But another one had come out of remission. It was so new that the doctors didn’t really know what to expect. I was very hopeful on the day I reported to the hospital for treatment. I was taken into a standard hospital room, where a nurse brought in an infusion bag. The whole procedure took only 30 minutes—a half-hour that would hopefully save my life and potentially the lives of countless others. I had an immediate reaction as soon as the IV was started. It was so dramatic that I thought it must be psychosomatic. I got a terrible headache and a sudden dry cough.
The IV was stopped for a few minutes to administer Benadryl; then I continued with the infusion. Two hours later I was vomiting and had a 105˚ fever. (Since I underwent the procedure, the doctors have learned that the patient must spike a fever in order for the treatment to work.) Afterwards, I fell asleep. The next morning I woke up and felt completely fine! The entire experience was a piece of cake compared to everything else I’d been through over the past ten years. It was almost too easy! It was sort of like going through labor pains, which ultimately leads to joy and in hindsight you don’t remember. I actually walked across the street under my own power to the hotel where I was staying. For the next three months I went back to the hospital every week for a multiple-night stay, where I underwent a PET scan and a SPECT scan, which analyzes the function of internal organs. By September the doctors pronounced me 100 percent free of cancer! I felt better than I could remember feeling in a decade. The researchers at the Mayo Clinic had definitively proven that virotherapy, destroying cancer with a virus that infects and kills cancer cells but spares normal tissue, can be effective against deadly multiple myeloma. In January, though, I developed a plasmacytoma, a tumor mass, on my forehead. This tumor was no stranger to me or my family.
In fact, my children had given the name “Evan” to this “frequent guest” over the years. I had always been able to sense when he was about to reemerge, signaling that the cancer had come back. Just 36 hours after the measles infusion Evan was gone, so his appearance wasn’t a good omen. In March my blood work started to reflect that I was coming out of remission. This was a very big blow to me. I was overwhelmed and depressed, and I’m usually so upbeat. Not only was I disappointed for myself but I felt as if I was letting the researchers down. When the doctors decided to do a bone marrow biopsy they made a relatively wonderful discovery: The cancer wasn’t in my bone marrow! It had “only” reappeared as a plasmacytoma, which meant that there was hope. After a course of mild radiation I am now in complete remission. My story recently became publicized because Dr. Russell’s study has just been accepted for publication. I am thrilled to spread the news. My next doctor’s appointment is coming up on June 3, and I don’t anticipate that I will be told anything bad. I feel great and have an incredible amount of energy. I’m living in the present tense. I thought I’d be dead by now, but right now I’m cured! My family became a lot closer because of my experience. My kids were only seven, eight and ten years old when I was diagnosed. Each child was impacted differently, but my illness served to tighten all our relationships. I do feel that my children are more grounded because of it. I’m eager to share my story with Ami readers because I have a strong faith that has seen me through this challenge over the years. I have a huge respect for G-d’s chosen people. My message to the world is that you need to advocate for yourself as a patient; if I hadn’t, I might not have been lucky enough to be chosen for the trial. It was totally random that I saw a news clip about this treatment on TV, being created by the very hematologist/ oncologist who had been treating me for years. I am hoping that more and more people will be treated this way, and that soon this vaccine can be mass produced and tweaked to produce even better results. The doctors have explained to me that there is no second chance; once the vaccine has been delivered, the body’s immune system will recognize and attack it if it is reintroduced. Nonetheless, I’m optimistic about the future. I really want to see this treatment take off and become the new face of cancer treatment. There’s always hope.
