Bowie, MD; email@example.com;
3-17-1933 / Class of '98 / Type: IgG Lambda / Last
7/97 - 12/97.
A "bump" on my head kept getting larger and when I went to my
family doc with some pain in the kidney area I asked him what he thought of the
bump. The pain was from the lower rib and not deemed important (went away in a
few days but later seen as a rib lesion) but the bump landed me on a surgeons
table to remove a "brain tumor". The 4x5-cm tumor was removed on
12/23/98 and the biopsy showed it to be composed of 100% plasma cells, and thus
began my MM trip. The following staging tests yielded IgG = 4000 mg/dl (700-1400
normal range), IgA and IgM suppressed, B2M = 3.8 mg/L (0.6 - 2), BMB = 20%
plasma cells in marrow (<5%), Bone Scan - 7-8 additional lesions, creatinine
= 1.0 mg/dl (0.1 - 1.6), BUN = 10 mg/dl (8 - 25), Uric Acid = 6.5 mg/dl (4-9),
monoclonal bands in serum and urine (lambda) electrophoresis. Conclusion Stage
IIA (IIIA if one insists on the > 3 lesions parameter but otherwise good
health caused IIA to be accepted). The
bone scan also showed a large tumor in the right shoulder (clavical area) which
became very painful just prior to starting chemotherapy.
The pain completely disappeared within a week of starting chemo.
NEWCOMERS: This is the kind of
data you need to characterize the disease and establish a base from which to
measure progress. Additionally it's the kind of data the MM list group like to
know about in order to provide you our opinions (at least IgX, B2M, lesions,
creatinine, presence of M-protein in serum and urine, D-S Stage).
1/98 - 5/98.
Five cycles of monthly MP and Aredia with no problems (save for the
normal sleep disruption while on melphalan and the flu like hangover symptoms
from the first two Aredia treatments and every time I ceased the prednisone). At
this point the IgG was down to 1900 and I stopped MP to explore harvesting stem
cells before I further damaged my marrow with alkylating agents.
6/98 - 7/98.
Casting around (no treatments) for BMT centers willing to do it
"my" way. By late July I settled on the HUTCH. At that point IgG had
risen to 2500 and B2M was 2.4.
8/98 - 9/98. Everyone
wanted me to do a few cycles of VAD to knock the values down prior to harvest.
After researching the potential problems of vinchristine (the V) and Adriamycin
(the A - generic doxorubicin) and taking note that several MM experts say that
dexamethasone does 80% of the VAD job I rejected the VAD and underwent 3-14 day
cycles of dexamethasone (40mg/day for 4 days then 10 days off)(some euphoria
while on dex and a really bad, flue like, hangover coming off the dex, and some
leg cramping). At conclusion of that the values were IgG = 600 (below normal
range), B2M = 2, no detectable urine protein.
At the HUTCH they ran a complete set of staging tests. IgG = 538 and
serum M-protein = 500 (e.g. the good IgG protein is 538-500 = 38 or essentially
zero which gives me a new problem - no IgG protection at all thus very
susceptible to any respirators problems – need, perhaps, gamma globulin
infusions but how when it is in very short worldwide supply?, B2M = 1.7
(NORMAL!), BMB < 1% plasma cells, CRP (C- reactive protein, a shadow
measurement of IL-6) = 0.7 mg/dl (0-0.08), 24 hr. urine protein = trace or none,
MRI (their own technique) picked up a few additional small lesions in ribs and
sternum and showed mild inhomogeneous marrow density.
I rejected their desire to do a Cytoxin cycle and allowed only the G-CSF
(Granulocyte-Colony Stimulating Factor = Neupogen@ - generic filgratsim) shots
to stimulate the production of stem cells for 5 days. Started apheresis on day
4, processed 12L of blood and got 3.3*10^6/kg of CD34+ cells then 2.2 on day 5
for a total of 5.5 (against the goal of 5 which is enough for two transplants).
After two more days to insure that the blood values were returning to normal I
11/98 – 2/99.
Decided to forego any treatment save for the monthly Aredia IV’s.
Unfortunately the IgG rose steadily (11/98 – 990 mg/dl, 12/98 – 1430,
1/99 – 1720, 2/99 – 2280). Decided
at this point to try and complete an induction protocol with Dex.
My induction protocol had been truncated in my rush to get the harvest
done. Induction being defined as
treatment to point of best response then about 3 additional cycles to pin down
(hopefully) a plateau. Chose Dex
due to my proven prior excellent response.
2/99 – 7/99.
Monthly Dex cycles (40 mg/day for 4 days) at mid month with IgG taken
on first of each month. 3/5 –
1330 mg/dl, 4/2 – 960, 5/7 – 1200, 6/4 – 1400, 7/2 – 1310.
While it may look like a plateau I suspect I am just trapped into a
sawtooth pattern with each dex pulse reducing the IgG then it rises until the
next dex pulse. At this point I
quit all treatments (save for Aredia) to watch and see what happens and consider
7/99 - 10/99.
IgG rose quickly (8/6 - 2230, 9/3 - 3350).
Restarted monthly mid month Dex pulses, 10/1 - IgG = 2830. MIBI scan -
nothing new. All blood and urine values within or, close to, normal range.
10/99 – 8/00.
Continued 4x40/month Dex pulses and IgG stayed, more or less, in the
3500 range. Blood sugar became a
serious problem about 1/00 (steroid induced) with serum glucose as high as 600
mg/dl. After a couple of months we
got this stabilized with a combination of insulin and Actos. At
about 7/00 it was becoming apparent that the Dex was no longer doing the job as
the IgG started rising (7/19 – 4510, 8/16 – 5470) quickly.
8/00 – 1/01.
Tried to arrest the rise in IgG with CP cycles (1.5 gm Cytoxan by IV and
4 100 gm days of prednisone). After
4 cycles it was clear that it was not doing much – the IgG value remained
about constant but wouldn’t turn around.
In early 1/01 the IgG passed 6,000, rising fast, and I was feeling poorly
so I decided it was time to go for the Auto transplant.
1/01 – 5/01.
At the HUTCH, after restaging (IgG = 6110 mg/dl, m-spike = 4.8 g/l, Tumor
burden = 50%) it was recommended that we first do a couple “debulking” chemo
cycles to get the markers down to more reasonable values prior to the transplant
protocol. In February and March we did two cycles (8.4 gm of Cytoxan and
430 mg of Taxol each time). The IgG
dropped to 1500 mg/dl and the m-spike disappeared.
Then we did the Auto (my new birth date is 4/19/01) and in May I went
home. To say the process was a
walk-in-park would be a gross understatement but in hindsight it wasn’t such a
big deal. In May my IgG was 368
mg/dl (very low!) and there wasn’t any m-spike.
5/01 – 4/02.
I just passed my 1st "re-birthday" and am doing great.
The year has been pretty uneventful – IgG is now about 680 mg/dl and
there is no visible m-spike. I
agreed to an IL-2 trial during the transplant (stem cells were soaked in IL-2
and I got IL-2 by IV for 4 weeks (really nasty stuff!)) and this protocol calls
for interferon alpha (INF) until relapse – so I am doing INF.
I have no confidence that the IFN is beneficial, at all (literature is
very mixed on this issue) but I agreed to it and will meet that commitment as
long as I don’t have negative side effects (and there are not any (yet!)).
Dex induced diabetes has disappeared since I quit taking
the steroids but the steroid accelerated cataract problem wasn’t reversible
and I had cataract operations (they are trivial) on 4/3/01 and 9/11/01.
Questions, or want to talk – call or email me (see