San Diego, California; firstname.lastname@example.org
Class of '98 / Type: IgG-kappa / MM w/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,
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 followup
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
While in the hospital to treat that condition she also developed a second
respiratory infection that could not be halted by antibiotics. This led to her
death about 10 days later.
As the sole caregiver, I would have been completely overwhelmed except for a
very strange coincidence of events. I myself was unexpectedly diagnosed with
lower jaw cysts that had eroded bone to the point that an operation was needed
very quickly. My parents (in their late 70's) flew in from Maine as a desperate
move to cover for me during what was expected to be a significantly disabling
operation (recovery time of at least 2 weeks.)
Fortunately, the jaw operation was so smoothly performed I essentially
recovered by the next day - much to the oral surgeon's amazement. My parent's
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
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 also noted another especially interesting similarity between the two
diseases. There is a publication in Multiple Sclerosis 1998 Jun; 4(3) 254-6
entitled "Free light chains in multiple sclerosis urine". The authors
are PD Mehta, SD Cook, et al from the Dept. of Immunology at the NY State
Institute for Basic Research in Developmental Disabilities, Staten Island, NY.
From the abstract (I need to order the full article) I gather that the
researchers have discovered that MS is associated with abnormally high kappa and
lambda light chains in urine. In particular, the authors note that for
relapse-remitting MS (which is what Patricia had) the kappa light chains
increase during relapse and decrease during remission. The levels of kappa light
chains did not vary with progressive cases. (One infers that the kappa levels
just stayed permanently high for these cases.)
In Patricia's case I recall that during her MS diagnosis in Dallas in 1981, the
doctors performed a spinal tap that showed abnormal immunoglobulin levels. They
did not tell us which immunoglobulin was abnormal but I'll bet it was IgG -
matching her myeloma. Not much was made of it at the time but her MS specialist
at the Texas Neurological Institute said it was consistent with the MS
diagnosis. I think maybe the MM and MS researchers should compare notes.
Normally the MS researchers are oblivious to multiple myeloma (and probably vice
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.
Written in great sorrow.
Bob in S. California