Spring Hill, FL; RozJ484@aol.com
1947 / Class of '97 / Type: Kappa light chain / Last Update: 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.