Spring Hill, FL; RozJ484@aol.com
1947 / Class of '97 / Type: Kappa light chain / Updated: 1/00
Jan, 2000: I currently live in Spring Hill, Florida to be near my daughter. Insurance issues force me to travel to California for medical care. My e-mail address is I lived in small towns in Northwest Indiana until 1987 when I moved to Walnut Creek, California.
I can remember only one severe allergic reaction, which I experienced from a wasp sting in my 30's. Other than childbirth four times and two female surgeries, I was only hospitalized one other time for an intestinal virus, which was fairly serious.
Shortness of breath, weight loss, and fatigue led me to have a physical in February 1997, which found serious anemia and a heart murmur. Tests were done to rule out colon cancer, as there is a family history. A hematologist/oncologist ran more extensive blood tests and determined that my kidney function was impaired. The nephrologist blamed kidney failure on overuse of Ibuprofen for bone spurs, tendinitis, and Tietze's Syndrome. Epogen shots were started, but my blood pressure soared, causing lost vision due to burst retinal blood vessels, and my breathing became more labored.
In January 1998, I had an emergency thoracentesis, removing two quarts of fluid (an incredible amount for someone my size, 4'9", 95 lbs.). What a relief to finally breathe freely again! The fluid returned within days, so I was admitted to the hospital with congestive heart failure. A kidney biopsy showed amyloid, so a bone marrow biopsy was finally done.
I was diagnosed with stage 3 MM, kappa light chain disease, with 45% plasmacytomas. Aggressive treatment was started, so I was hospitalized in February 1998 for a round of VAD. Vincristine caused ileus (intestinal paralysis), extensive neuropathy, and jaw pain, so back to the hospital again.
Incredibly painful bacterial pneumonia caused a fourth hospital stay in March 1998. Because my oncologist didn't diagnose the pneumonia while I was in her office and hadn't diagnosed the MM, I changed doctors. My current oncologist is not a myeloma expert, but he is much more cautious.
After I recovered from the pneumonia, I had two months of Melphalan/Prednisone, with bearable side effects. A bone marrow biopsy showed the disease had decreased to 5%, so I started Interferon shots, which caused a terrible rash. During this time, my creatinine was 3+ and my potassium level frequently measured 6+. I was given IVIG several times and blood transfusions.
It was decided that I should go for a stem cell transplant. My creatinine was down to 2.2, which was over the limit at UCSF, but because everything else looked good and my disease was back up to 25%, we decided to take a chance. Cytoxan was infused, which gave me the worst headache of my entire life, and then large doses of Neupogen prepared me for pheresis. Enough cells were collected in two days.
I was admitted to UCSF on December 1, 1998 and given high-dose Melphalan. Within two weeks, my kidneys shut down and I suffered a heart attack, so I was put in ICU and on continuous dialysis. During this period, I was unaware of what was happening, hallucinating, struggling to breathe, and suffering from severe stomatitis. Miraculously, I pulled through. Though still unable to eat, I was released on oxygen December 23, but was re-admitted two days later at my local hospital with breathing difficulties and chest pains. It was determined that Dapsone had damaged the red cells so I wasn't getting sufficient oxygen. Dialysis continued three times per week, and I was able to go off oxygen.
Recovery was very slow, but I'm doing remarkably well now. Although the nephrologists thought it unlikely that my kidney function would return, I went off dialysis in March 1999. An October 1999 bone marrow biopsy showed no detectable myeloma, and there was no Bence Jones protein in my urine. My creatinine level is down to 2.1, but my BUN is 61; my potassium level is finally normal, but my cholesterol and triglycerides are way too high; my hemoglobin hasn't reached normal yet, but I'm getting close, and my platelets have finally risen to 150,000. I currently take no medications, other than Estradiol for menopause. A renal diet continues to be very difficult to follow.
I don't suffer intense bone pain that many myeloma patients endure, but the trade-off is that my kidneys could fail again. When the disease returns, further treatment will be very limited for me, due to the kidney damage, so although fatigue is my constant companion, I enjoy each day I've been given.
They say knowledge is power, so I would advise patients and/or caregivers to learn all they can about MM and encourage them to find a support group for help in understanding how to cope with the decisions, the pain, and the emotions.
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