1953 / Class of '99 / Spinal fractures / Radiation, PCSCT / Remission / Updated: 3/13
Holidays always help us remember life experiences, and so it is with my story. We had gone to the beach for Labor Day weekend, September of 1998. My back had been bothering me and I had taken a heating pad along in the hope that I could get relief and enjoy the weekend. We met friends and family and the back pain was annoying, but tolerable. The ride home was the worst and by the time we arrived home, my entire back was in horrible spasms. I couldn't stand to be touched. I made it into the house and carefully laid down as I cried and sometimes screamed with pain. I didn't sleep at all that night. The next morning, we went to our primary care physician. He examined me and gave me a muscle relaxer and pain medication. I was to have an x-ray of my spine when the pain became more tolerable. I spent the next week in bed. My back seemed to improve.
I had the x-ray and went back to work as a school librarian. Of course when I returned to work, everyone had the name of a great chiropractor, doctor or acupuncturist. On the follow-up visit to my doctor, the x-ray results indicated that I had normal deterioration of the spine for "someone of my age", 44. My back flared up a few times over the next few months, though never as severely, and the doctor continued to prescribe the meds. In March of 1999 my husband and I were planning a trip to Switzerland. Early in the month, I went back to my primary care and told him we were planning a trip and I wanted to enjoy myself. I asked for a definitive diagnosis. He ordered an MRI. By now, the pain had become more intense. Driving over a pothole could make me want to scream and sneezing was a major production. After performing the MRI, the technician asked what I had been told was causing the pain. I told her about the x-ray results. She had a look of concern on her face and indicated that she would fax my results to the physician immediately. I was thinking she must have noticed a slipped disc or something. We drove to the doctor's office. By this time, I could barely stand to walk. Once in the office, I asked for something for pain, immediately. He said, "do you know what I mean when I say Multiple Myeloma?" I am a former nurse, so I indeed knew that the suffix "-oma" meant cancer, even though I had not heard of this type. I couldn't believe that for six months I had been misdiagnosed, and at age 45, I was facing an incurable disease. He ordered visits to an ortho doctor (who refused to see me because my primary had not submitted the proper paper work), and a neurosurgeon.
When the neurosurgeon saw my films, he sprung into action. I had four tumors pressing on my spine and several spinal fractures with cord compression. From there it was a whirlwind. I was immediately admitted to the hospital. This was a Friday and the head of Radiation Therapy was contacted to begin treatment immediately that weekend. My primary care selected an oncologist for me and he did the bone marrow aspiration and gave us the grim news. I was in stage III with 70% CA cell activity. He said that if I had continued to go untreated, I could live 4-6 more months. I was to had 14 radiation treatments followed by six cycles of VAD and then a BMT. The radiation made me sick. I tolerated the chemo pretty well. Some quirky sidebars were several episodes of excruciating leg pains that lasted for hours and feet and ankles that were three times the normal size for about 3 months. I had bilateral pneumonia in May. I was very close to dying. I was in ICU for a week and had to have a transfusion. I had been working up to that point in a new technology position. Between all day chemo for a week each month, and hospital time, I used all my leave and had to take early retirement.
In November I had pneumonia again and in January 2000, I had bronchitis. Seems like any germ going attacks my respiratory system. My NEW primary care suggested a pneumonia shot. At the end of the six cycles of chemo, a bone marrow aspiration was repeated as well as a skeletal survey. I still had about 7% cell activity. My onco decided to go for 2 more cycles of VAD. I had also started Aredia once a month. In December, we made the trip to what had become my OZ... Johns Hopkins. The front desk sent us to the wrong floor and that made us late for my appointment. The doctor I was to see refused to see me because I was late. Although this was a huge emotional letdown, I realized that someone that cocky was not my kind of doctor. The following week, my onco referred to another onco/hematologist closer to home. He is fantastic and very compassionate. I'm now in the midst of getting pre-testing done for a peripheral stem cell transplant. It should happen within the next month.
I have the feeling this will be the hardest part of my journey.
October, 2000: After beginning the preparation for PSCT in March, I had a good cell collection on March 26th. The procedure was done at Holy Cross Hospital in Silver Spring, Maryland. I waited for my oncologist to return from vacation to proceed with the transplant which took place on April 13, 2000. I was in the hospital for only 3 days post transplant, then went to a house that the hospital owns across the street, to continue my recuperation. That also kept me close enough for daily counts and catheter care. I remained at the house for the next 8 days.
The worst complication that I experienced was a severe sore throat, unbearably painful. I was discharged on Easter Sunday. I had to be readmitted about a week later with a fever of undetermined origin. My dual port catheter was removed and lots of blood cultures were done. I had an intestinal bug which was treated with IV antibiotics for a week.
I have been doing fine since then. I am 6 months in remission. I am feeling well except for the vertebral fractures I have had since the beginning of all of this. On September 12th I had a vertebroplasty performed to try and alleviate some of the discomfort.
I had done a year's research to find someone locally to do that and found a Dr. Wayne Olan at Suburban Hospital in Bethesda. The discomfort is diminished, but still there. My concerns now are more emotional. I was a very active person before and now I feel well enough to do some things, but I am unable to work. I am 46 years old and very displaced. Fighting cancer and becoming a survivor is ultimately a very solitary thing.
February 2004: I have been in remission for three and a half years. In October 2003, I went into my Oncologist's office for my monthly blood check and Zometa infusion. He had been monitoring me closely and was on top of it when my IgG was up to 2800. Dr. James Berenson, one of his colleagues, had just opened a clinical trial and I was eligible to participate.
I am in a 38-week trial called the MAC trial. This is a combination of Melphalan, Trisenox (arsenic) and Vitamin C (ascorbic acid). The protocol is given in 6 week cycles. The first week is four consecutive days of treatment . That is the week that Melphalan is given orally with the other two components given IV. Weeks 2 - 5 are two days a week with just the IV drugs administered. Week 6 is the "rest week" when extensive blood tests and a 24 hr. urine collection are obtained and studied. I am currently halfway through the third cycle. I have tolerated the protocol fairly well. The first week is the hardest. It leaves me wiped out for a couple of days. Blood counts are closely monitored on treatment days and the appropriate meds are given to boost white or red blood count when needed. The trial also requires a weekly EKG to make sure that heart function is not impaired.
So far, so good. I am living a fairly normal life except having my schedule wrapped around treatment. I am so grateful for the research breakthroughs that enable patients to be on the cutting edge of new treatment options and for oncologists like mine, Dr. Ralph Boccia, who are constantly seeking the best treatment for his patients.
May, 2007: I have been in another clinical trial since then and was in complete remission (MSpike 0.0) for close to a year. I am so fortunate to say that I am in a very small percentage of MM stage III survivors to have made it past the 5 year survival rate. I have just passed my 8th year mark since diagnosis.
March 2013: This month marks my 14th year of survival. After participating in the Revlimid clinical trial in 2007, I was in remission for a year. When my M Spike started changing, Revlimid was in the marketplace and I started taking it once again, 21 days on, 7 days off. I was very responsive and since long term effects are still not really known yet, I continued even after I was back down to 0.0. February 2012 I went to Maryland Spine Center in Baltimore for a consultation to have reconstructive surgery to straighten my spine for the poor healing and constant discomfort from my original fractures. Thankfully, the Zometa infusions had effectively done their job and I was able to have two titanium rods and 14 screws placed in my back. In the summer of 2012, I began having severe GI problems, so I had a colonoscopy, endoscopy, barium swallow and sonograms all of which showed no disease, other than gastritis. In December of 2012, I decided to discontinue Revlimid for awhile. Currently, I am no meds except Zometa every 6 weeks. I am enjoying life with my husband, 4 children and 5 fantastic grandsons. For the last 8 years I have been working 12 hours a week in a small museum in Silver Spring, MD.
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