I didn’t suspect that I was sick with an incurable disease. I mentioned I had a backache and was tired, but I was a nurse on the night shift so I didn’t think anything of it. Routine lab work revealed an elevated total protein, which led to a series of labs and finally a bone marrow biopsy. By then I was expecting the diagnosis of Multiple Myeloma, but I wasn’t ready for the news of having a rare, angry and aggressive form that required immediate treatment.
I was diagnosed with Plasma Cell Leukemia at age 49 in Oct 2012. Inpatient chemo began the following week, along with 4 transfusions of packed red blood cells. Induction phase consisted of 3 rounds of VDT-PACE chemotherapy that put me back in the hospital three other times for neutropenia and nausea and vomiting.
Since an auto transplant was planned, my 4th round of chemo was CyBorD to allow better results at the time of harvest. I had a complete response which was quite remarkable as my tumor burden was high. Stem Cell transplantation was the next phase of treatment. A week later, I was at my transplant center preparing for Auto Stem Cell Transplant 2/22/13. The doctor wanted to do an allo transplant but had no matches, so we proceeded with harvesting. The neupogen did not mobilize my stem cells quite enough, so I received Mozibil which worked very well. Watch out for the diarrhea! My transplant was uneventful on 2/22/13, but N+V continued to be my nemesis for months to come. I had several transfusions of platelets, potassium and calcium. C-diff kept me in the hospital an extra week. I was finally back home in about 6 weeks.
Three months later, I spent another week in the hospital for pneumonitis and hypoxemia. At +100 days, my blood work and bone marrow biopsy results showed that I remained in a complete repsonse. I am now on Revlimid 10 mg for maintenance and doing well.
Now a year later, I am back to work one day a week as a nurse and getting back to normal activities. Fatigue and back aches are tolerable. I am THANKFUL for my excellent doctors, family and friends, the local IMF support group and my Savior, Jesus. I was never alone and I knew I was loved and cared for. So keep a positive attitude! Don’t believe everything you hear or read, we are unique. Even when the odds are against you..keep fighting! God is GOOD. I am living proof!
— Gracie W. Plasma Cell Leukemia Survivor ’13