San Diego, California; email@example.com
Class of '98 / Type: IgG-kappa / MM w/multiple sclerosis (MS), extensive plasmablastomas / Died 11/98
Written by her husband, Bob
I am an avid daily "lurker" on this list but have only posted a very few times. Still, I feel I must mention the upsetting news that my wife, Patricia, succumbed yesterday afternoon to her very aggressive Myeloma (one that generated extensive plasmablastomas - rather than the more common plasmacytomas - in the spinal column.) She was first diagnosed in early April of this year, 1998.
She failed to respond well at all to any of the conventional treatments that
were attempted. The best response we obtained was to a single treatment of VAD
(which made her too sick to continue the chemo treatment) followed about 4 weeks
later by a Decadron/Biaxin protocol mixed with the antiviral drug "gancyclovir."
The Decadron/Biaxin/gancyclovir protocol was added at Dr. Durie's suggestion and
may have contributed to her longest plateau (of about 6 weeks.) Unfortunately,
we were unable to continue the full course of gancyclovir either since it
immediately dropped both red and white blood cell counts to frighteningly low
levels. Nonetheless, her plateau persisted until about 1 week after a follow-up
Decadron/Biaxin pulse. At that point, there was spinal tumor regrowth that
essentially changed my wife's condition once again from paraplygia to near
quadraplygia. A few weeks later, her MRSA infection (originally from a groshon
PICC line insertion procedure) flared up in the pleural cavity and collapsed her
Fortunately, the jaw operation was so smoothly performed I essentially recovered by the next day - much to the oral surgeon's amazement. My parents' help was therefore not needed in the expected way but it caused them to be present during my wife's unpredicted last days. The relief provided by their presence during that last stage of the Myeloma progression will never be forgotten.
There are some interesting aspects to Patricia's case in the apparently
smooth transition of MS into MM "symptom-wise." I thought this was
really rare but Dr. Durie mentioned he had 6 ( or was it 8? ) such patients. My
wife's MS symptoms were relatively "mild" in that she always recovered
almost all loss of limb/muscle function after her attacks and suffered primarily
from warmth intolerance, chronic fatigue, and widespread peripheral neuropathy.
Dr. Durie said this was similar to his MS/MM patients.
I have never really described my wife, but I must mention that she is probably the most disciplined and mentally tough individual I (and most people) will ever meet. Until her last moments she alone controlled her treatment protocols. In many ways she was at least as aggressive a combatant as the Myeloma that eventually won out. The unwaveringly positive determined manner in which she knowingly managed a terrifying sequence of downhill events made a vivid lasting impression on her doctors and all others that met her. Even her oncologist became emotional as he and I held our last telephone conversation that followed her death.
She will be a very very tough act to follow. My only consolation is that we left no stone unturned in her treatment and, in the process, forged (and continue to forge) new potentially important links between researchers in the MS community (she had MS that seemed to "transition" into IgG kappa Myeloma) and those in the MM community. So the battle is far from over yet. Perhaps the Myeloma chose an especially poor victim on this occasion.
My wife is originally Cornish. The Cornish have a saying that the Devil is
never found in Cornwall for fear of being put in a pasty and eaten! Let's trust
that there is some peculiar truth to the picturesque saying.
Site © 2000-2015 Dean Gallea (in loving memory of June Brazil)