1963 / Class of 2003 / Smoldering Multiple Myeloma / Last update: 9/03
I am currently an active duty United States Marine with over 20 years of
service. I have traveled the world and lived in Europe, Japan, Hawaii, and the
mainland United States. I was born and spent the majority of my life in rural
Tennessee prior to the Marine Corps. Typical childhood vaccinations, sicknesses
and broken bones. No family history of any cancers, in fact, the family tree
would identify a long life ahead of me.
During the past 12-15 months I have experienced what most would
refer to as "Getting Older". It's a common term as you near the 40 year mark. I
seemed fatigued, but not enough to stop 10-12 hour work days, exercise, or
whatever came my way. I have always had neck and back issues (everyone in the
Marine Corps has neck and back issues, occupational hazard), well before any
other signs, so most doctors just prescribed typical muscle medication.
In January 2002 I visited the flight surgeon, complaints of urinary
frequency, dysuria, and feeling of incomplete voiding. In office Hemocult, PSA
and urine culture, WBC 7.8, HB 14.9, HCT 44.4, PLT 392, referred to urologist.
In February 2002, I spent some time with a urologist, his assessment: Dysuria,
Hyperuricemia, and right flank pain. He did note uric acid at 7.4 and calcium
high at 10.8. Placed me antibiotics for three weeks with a presumptive diagnosis
of prostatitis. Ordered a renal ultrasound and return in two weeks for
cystoscopy. The doctor did believe I may have had a Gout incidence evident by
the Uric Acid. Completed all of the before mentioned and they were read
unremarkable, nothing. Placed on Saw Palmetto. In fact, the doctor mentioned I
was way too young to be seeing him. The antibiotics seemed to do the trick, I had
In August 2002, Severe back strain, put me on the ground and took my breath
away, could not support my body or get to my feet. I forced myself to my feet in
order to "Walk Off" the incident, so it would not tighten. We spent the day out
walking the malls and I went to see the flight surgeon the next morning.
Prescribed Naproxen, 500 mg.
12 November 2002, Right testicular and right flank pain, urethral discomfort,
heaviness in groin. Flight Surgeon comments: Patient has been seen previously by
Urologist, PSA NOT ELEVATED, confusing picture. 14 November 2002, Patient
reports to clinic today (same flight surgeon), he is concerned that "Something
is wrong". Very mild dyseria and frequency. Actual entry, "Patient is not
consolable regarding his feeling that he has a significant medical problem".
Doctors notes: ALT-28, AST-22, Calcium 10.8, PSA 0.59. Ordered abdomen and
pelvis CT, completed 24 November, Findings: lung bases unremarkable, livers has
no focal abnormality, no intrahaptic ductal dilatation in gallbladder, well
extended, spleen is normal, the kidneys are unremarkable, nothing, no where.
Total frustration, I'm thinking they believe I'm a whacko! I went on a Carnival
cruise to the Bahamas the first week of December for my 11th anniversary. Great
time, I should have stayed there!
In December 2002, upon return from the cruise I was due for a required 5 year
physical that I had intentionally delayed trying to solve the previous issues,
it's hard to pass a physical when you have issues. Blood an urine work
identified an increase calcium level of 10.8, ESR 20, Everything else normal. No
flags went off. The flight surgeon suggested we watch for symptoms to "Stand
out" and go from there.
In early January 2003, my unit is preparing to support real world operations.
We are all going through the typical pre-deployment plans in case we actually go
somewhere. I ask the doctor screening my records to find out what is wrong with
me before I leave. I had my first Anthrax (in retrospect, Anthrax = immune
system = not good) shot 5 days before I had my blood drawn for testing? He
screened my records and ordered a few tests. It took four days, he literally
called me out of the group the morning we were doing final screening and said he
wanted me to see a Hematologist/Oncologist, I really had no idea until he
mentioned a caner indicator, an abnormal protein band, 0.8 H G/DL in the gamma
globulins, that may represent a monoclonal immunoglobulin or light chain, sounds
like a foreign language. All other test normal, parathyroid, ANA Tier, and RF.
The very next day I am in the Hilton Head office of a Hematologist /
Oncologist (my wife is a 12 year Registered Nurse, he is supposed to be the best
in the area). Due to the extreme urgency of clearing me for deployment, from the
time the blood work identified abnormalities, in less than 24 hours I had
completed a Bone Marrow Biopsy, bone survey, blood, and a 24 hour urine for
Bence Jones was ordered. I was to return the following Tuesday to discuss the
findings, a very long weekend to say the least. Microscopic description, Plasma
cells less than 10%, all normal, no foreign cells. Pathologist comments, based
on the finds, Monoclonal Gammopathy of Undetermined Significance (MGUS). In
order to confirm the test, we ordered a CD-138, the results were disappointing.
The Diagnosis: Smoldering Multiple Myeloma. Immunostains reveal a 10-15%
plasma cells with kappa light chain restriction. This finding indicates bone
marrow plasmacytosis. The bone survey indicated no evidence of Multiple Myeloma,
no osteolytic lesions, no fractures. The pedicles appear normal. Beta 2 @ 1.7
MG/L, IGM 149, IGA 195, IGG 1448 mg/dl, Bence Jones = trace amounts, faint
monoclonal free kappa chain is detected, all other levels normal. No renal
failure, No anemia, based on internet Myeloma research, less than 11.5 for
Hypercalcemia (I'm 10.8), I don't believe I have Hypercalcemia.
I have received no treatment to date. I have spent the time researching. My
treatment will be at Wilford Hall in San Antonio, the Center of Excellence for
the Department of Defense. Initial research indicates the "Auto" stem cell
transplant. They have all my records and are reviewing, I'm awaiting their call
becoming as educated as I possible can on the latest treatments and options. I
have read every website, visited online centers such as ACRC, M.D. Anderson,
Moffitt, Duke, and others. I am interested in the FISH test for prognostic
indicators of chromosome 13. My goal at the moment is education, await the call,
quiz the doctors, exercise, and drink lots of water. My current symptoms are hit
and miss rib and hip pain.
30 January 2003 - I talked with my Primary Care
Manager (PCM), they received a call from Wilford Hall today informing them I was
a candidate for Autologous Stem Cell Transplant (ASCT). I stopped by and talked
with the PCM, Wilford Hall would like me to decide on how to execute the
treatment. The stem cell harvest must be completed there, the preparative
regimen and post treatment can be local in Hilton Head. I have decided to get
the entire treatment course from Wilford Hall and take to my Hematologist /
Oncologist to discuss their plan.
25 February 2003 - Arrived in San Antonio Texas at Wilford Hall Medical Center
(WHMC) for a second opinion and complete work up. I met with the Director of the
Bone Marrow Transplant Unit. We discussed his beliefs for treatment and planned
the week of testing. We started out with a complete blood count and skeletal
survey. The second day we completed the 24 hour urine and on day three the Bone
Marrow Biopsy. We met that Friday to discuss the results. No signs of anemia or
renal insufficiency, faint Bence Jones 5mg/24 hours, no skeletal signs of
Myeloma, Bone Marrow Aspirate 5-10 % plasma cells with no sheet of plasma cells,
Beta-2 was 1.7, M-protein 1.26 gm/dl of IgG kappa, bone marrow core stains were
5% plasma cell. The results of the FISH were normal. Medical diagnosis from this
physician, MGUS, Plan and Recommendations: Check a CBC monthly for six months,
Check an SPEP monthly for the next six months, check chemistries about every
other month for the next six months.
13 March 2003 - The initial concern was the increase of the M-spike from
diagnosis at .80 in January 2003, to late March at 1.26. We believe it may
actually be a lab difference vice disease progression. SPEP was completed
locally in South Carolina at the same lab and returned a .70. It supported the
theory that it was a laboratory difference. I mail blood to San Antonio monthly
now to allow for continuity in testing.
10 April 2003 - SPEP M-Spike results are 0.97, a slight decrease. I continue
to work through or learn how to live with the addition of unwanted protein in my
blood. Peripheral Neuropathy was worse initially, but now seems to be replaced
with sore joints or muscle cramping. I am awaiting the results of the recent
mailing of serum for testing. My body sends me confusing signals; I can't tell
if they are "side effects" of MGUS or disease progression. I have been working
hard and have tried to slow things down a little. I have received so many emails
sharing your stories and offering prayers. I want to personally thank everyone
for his or her gestures.
12 May 2003 - M-Spike 1.09, slight increase. I would like to hear from anyone
that experiences Peripheral Neuropathy related to MGUS. I experience this often,
yet sometimes not at all. I am trying to associate it with stress, diet,
exercise, anything to help decrease the occurrences.
July 2003 - M-Spike results 1.10, No treatments or medication. Some days
better than others regarding protein effects on the body. August 2003 - M-Spike
results 1.07, No treatments or medication. Some days better than others
regarding protein effects on the body.
I am posting my story because the survivor stories I have read on this
website have not only been extremely inspirational during this very challenging
time, but they are also educational. I have learned so much by reading
everyone's individual choices and treatments. I hope to help the next person
facing this challenge. I also would love to hear from anyone with lessons
learned and advice as they read my story. We are clearly in the emotional phase,
this is happening so fast. We realize the importance of getting to the treatment
phase, but it seems so hard to accept. My strength is my wife and children.
Together with faith and prayer we will defeat this disease. Semper Fidelis.