The summer
of 2006 I did not feel well. I was tired all the time and often
slightly queasy. At Thanksgiving in 2005 I had broken a rib, and a
few months later another one on the other side, and they weren’t healing
well. Finally at the end of August 2006 I went to my primary care
physician, and she ordered tests, including a CAT scan. A couple of days
later she called me. The CAT scan had shown lytic lesions on the bones of
my ribs and spine. That meant one of three things: metastatic breast
cancer, metastatic lung cancer, or multiple myeloma. She didn’t think I
had multiple myeloma because I didn’t meet the demographic (she was a young
doctor just out of residency with not a lot of experience). She ordered
another CAT scan, this one with contrast dye. A couple of days after that
CAT scan I started throwing up. I couldn’t keep anything down. She
ordered more blood tests. A mammogram had shown no sign of a breast tumor, and
the CAT scan had shown no sign of a lung tumor. Early in September 2006
she called and said the blood tests indicated my kidneys were failing, and I
should come to the ER right away. We were in the ER about 36 hours before
they moved me to a room. The nephrologist the FP doc called in thought it
was myeloma. They did a kidney biopsy and placed a dialysis catheter and
I had my first dialysis treatment on September 9, 2006. The next day an
oncologist visited and told me I had multiple myeloma. She gave me a
treatment to draw the calcium back into my bones, and gave me plasmaphoresis to
remove some of the myeloma protein.
We
were living in the New Orleans area at the time, and this was only a year
after Katrina. Medical care was still in disarray. My oncologist
told me she was sending me to the Myeloma Institute for Research and
Treatment (MIRT) at the University of Arkansas for Medical Science (UAMS) in
Little Rock. My first visit I was there for 3 weeks. I had MRI, PET
scan, bone marrow biopsy, and blood tests (25 vials of blood that first trip!),
and I still had to have dialysis 3 times a week. The MRI showed a tumor
had just about taken over my C4 vertebra in my neck. A surgeon removed
the vertebra and put a plate between C3 and C5 vertebrae. I was in a neck
brace for 10 weeks. The bone marrow biopsy revealed I had high risk, stage 3,
kappa light chain myeloma. The MRI revealed over 100 lesions on ribs,
spine, shoulder blades, and pelvis. I had compression fractures in my
spine, and I was now 2 inches shorter than I had been before myeloma. At
the end of that first trip to MIRT I signed up for a clinical study. Because
I had kidney failure some of MIRT’s standard treatments were out. My
protocol called for 3 months of thalidomide and dexamethasone, followed by
light chemo, then collection of stem cells, and tandem stem cell bone marrow
transplants. I was sent home on October 1.
After a
month on thalidomide-dex, blood tests showed the drugs were working. My
free light chains were reduced. In January 2007 I went back to
MIRT. I was given melphalan, and about 10 days later I did stem cell
collection. They got enough stem cells for 5 transplants. They sent me
home to get some strength back, and I came back to MIRTI star in March
2007 for chemo (cytoxin) followed by stem cell transplant. I got bad mucositis
and could barely force myself to eat. I started losing weight. I
was still on dialysis. After a bout of pneumonia my white count started
rising, and they released me to go home at the end of March.
In June 2007
I went back to MIRT for the second transplant. However, testing prior to
the transplant showed I had pneumonia, so I had to wait for a month until it
was gone. The second transplant took place on July 1, 2007. Again I
got mucusitis, pneumonia again, and a full body rash. I was also anorexic
and couldn’t eat. My white count finally recovered and I was sent home in
remission.
My first
checkup back at MIRT was in October 2007. My research protocol had called
for being put back on thalidomide when my platelets went up to 150000, but they
hadn’t by that October visit, so my doctor took me off the study and put me on
thalidomide. He told me I was in complete remission. But I was
still on dialysis.
The two
years after the treatment I returned to MIRT every 3 months. After that I
sent blood and urine samples in every 2 months, and visited every 6
months. Finally, at 5 years the visit interval was once a year, with
samples sent every 2 months. When I moved to Oregon in November 2012, I
stopped going back to MIRT. I see my hematologist/oncologist here ever 6
months, and I do blood tests every 3 months. I’m still in remission after
6 1/2 years. I’m still on dialysis, but now I’m being evaluated for
a kidney transplant.
That’s my
survivor story.
Sarah Lingle
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