1951 / Class of 2000 / Type: MGUS prog. to IgG (Kappa LC) within 3 mo. / Last
I grew up in Canberra - the "bush capital" of Australia. Canberra seems to be
a locus for a statistically anomalous high incidence of Myeloma in Australia.
Prior to diagnosis I enjoyed enviable good health and physical fitness. I worked
out regularly I the gym and was in better shape than most Aussie males my age.
In June 1999 I did a day hike in the mountains with the local Scout troop and
even though I was the eldest leader I was able to keep up with the 14- and
15-year-olds, leaving younger leaders and scouts to eat our dust.
I was diagnosed with MGUS at the end of June 1999 following blood tests for a
swollen lymph duct in the armpit. By September 1999 I had compression fractures
in lumbar spine with associated renal failure, consequential blood pathology
revealing that the disease had progressed from indolent to incandescent within
two months. IgG was 54. I was almost comatose when I was taken by ambulance to
hospital for admission. I woke up with a central line (cannula implanted through
the chest wall just below the collar bone) and tubes running every which way.
My treatment is supervised by a haematologist/oncologist in Canberra
hospital. My treatment began in hospital and continued monthly with nine courses
of VAD with Aredia. During this time I returned to work on a part time basis
(although I was taking the week after the chemo away from work altogether to
avoid opportunistic infections). After a short course of radiation treatment for
a focus of Myeloma in two vertebrae I had Aphaeresis to harvest bone marrow stem
cells after ten months of treatment (August 2000). The bone pain from the GCSF
was pretty intense but manageable.
An autologous bone marrow transplant in February 2001 went very well and I
made close to a record recovery with discharge after just 13 days (Canberra
hospital record is 12 days). I had no side effects or infections during the time
the BMT re-established. However, I had a brief bout of pneumocystosis in
July/August 2001 requiring limited hospitalisation, which has brought about a
change in the local protocol to maintain a regimen of high dose antibiotics for
six months after a BMT.
From the most recent consultation with the oncologist, the diagnosis is
achievement of a stable plateau phase. Latest blood pathology results are as
good as can be expected in the circumstances: WCC = 2.6, Hb = 121, Total
Neutrophils = 0.99, Lymphocytes = 1.09, IgG = 25.0, Beta2MG = 3.1.
I have been very fortunate to miss most of the side effects from treatment
and those have been minor. VAD induced peripheral neuropathy in both hands and
feet, though it has since retreated to a residual and almost imperceptible vague
tingling in the extremities of the fingers. Treatment continues with monthly
Aredia, twice weekly Bactrim (as prophylaxis antibiotic) and thrice weekly
Interferon (currently 2.4 million units).
Since the BMT I have returned to work full time. The only remaining side
effects are fatigue at the end of the day and some discomfort in my back on the
day following the Interferon. I have excellent support from the social work
department of the Canberra Hospital and from my employers, the National Health
and Medical Research Council in the Commonwealth Department of Health and
Ageing. The disease has induced some life-style changes such as giving up
gardening and forsaking the gym. I eat heartily and often just trying to
maintain a respectable weight.
A relative (my sister's father-in-law) also has MM and was in the same ward
at the same time I was admitted (he was having his BMT). Certainly, shared
experiences make understanding the disease and treatment much easier (it is just
a bit harder on the families when more than one member is affected at the same
time with the same disease). I consider my determination to be as fully informed
about the disease and my treatment and to be vigorous in consulting with the
oncologist (the often touted 'positive attitude) has been a significant help in
successfully overcoming MM.