Cincinnati, OH; email@example.com
1954 / Class of '95 / Type: IgA Kappa, Stage IIIA (at diagnosis) / Last
I am a single woman, born and raised in a suburb of Cincinnati, within 50
miles of Fernald uranium processing plant (now closed). I had no major illnesses or
severe allergies prior to diagnosis at age 41.
How I was diagnosed: One of the vertebrae in my back collapsed in
Jan.94. I was scheduled to see a doctor, but the intense pain went away after
3-4 days so I didn't pursue it. I really thought it was a muscle strain.
Sometime after that I noticed every time I sneezed or coughed, pain would shoot
from the middle of my back across my shoulders. I mentioned this to my general
doctor when I was seeing him for some other ailment. He didn't seem too
concerned. In March '95 I started having pain near my right ribs that wouldn't
go away. I went to see my general doctor again, and reminded him about the pain
shooting across my back. He ordered X-rays of my spine and ribs. The X-ray of my
spine showed the collapsed vertebrae. My doctor said we needed to do some more
testing to determine why my vertebrae had collapsed. MRI followed, which showed
multiple bone lesions. Bone marrow biopsy and protein electrophoresis confirmed
Initial lab findings showed an IgA level of 5200. Beta-2 Microglobulin was
2.5 after one cycle of Melphalan/Prednisone. Blood counts (white, red,
hemoglobin and hematocrit) were all low.
Where I was treated: Initially by a local Hematologist-Oncologist.
In March '96 I went to Little Rock, Ark. for an evaluation by Dr. Barlogie. He
recommended the protocol calling for two stem cell rescues (autologous
- 7 cycles of Melphalan/Prednisone from 4/95-1/96.
- 2 cycles of C-VAD from 3/96-4/96. This was to lower my myeloma markers in
preparation for stem cell collection.
- Stem cell collection in 6/96 after high-dose Cytoxan and again in 8/96
after high-dose Neupogen shots. Due to the poor quality of my stem cells, it
took 18 days to collect enough CD34 quality cells for two stem cell rescues.
- Blood stem cell transplant in 8/96 with high-dose Melphalan. Since I did
not achieve even a partial remission, I was advised to consider an
allogeneic transplant with T-cell depletion. I had several characteristics
which influenced this recommendation, primarily abnormal chromosomes and the
IgA type of myeloma.
- Allogeneic transplant with a mismatched related donor (my brother who was
a 5/6 match) on 2/13/97. This included total body radiation, high-dose
Thiotepa and high-dose Cytoxan. No major complications; released from
hospital on 3/6. Of course, during my stay I experienced all the usual side
effects related to high-dose chemo: nausea, vomiting, diarrhea, lethargy. I
also had a large blood clot caused by my catheter, part of which broke off
and went to the membrane around my brain. Luckily, I didn't have any brain
- On Day +99 (5/23/97) I was diagnosed with EBV associated B-cell
lymphoproliferative disorder. I received an infusion of my brother's T-cells
on 5/24. I experienced Grade II skin graft-versus-host disease which was
treated unsuccessfully with topical creams. Later I was put on a low dose of
FK-506 (Prograf) which cleared up the GVHD.
Current Status: I remain in complete remission. Returned to
work part-time in Aug '98 and full-time in Jan '99. I'm still taking quite a few
anti-fungals, anti-virals, etc., since my T-cell count remains low. I was
diagnosed with focal segmental glomerulosclerosis (scarring of the kidneys) in
1/00. This will eventually lead to kidney failure. I can only assume this
occurred because of my intense treatments since there's no history of kidney
disease in my family. Related to this diagnosis, my Nephrologist has put me on
an ACE inhibitor to keep my blood pressure in check. My latest bone marrow
biopsy shows no Myeloma.