Panama City, Florida; firstname.lastname@example.org
1963 / Class of 2003 / Smoldering Multiple Myeloma / Updated: 2/07
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.
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 no symptoms.
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!
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.
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.
October 2003 - July 1, 2004: Sorry for the long delay in updating my story. I have no excuse, perhaps just trying to forget. I can say there has been no real change in my condition since the last entry. My last (3) SPEP results were 0.92, 0.94, and 0.86. I am on no medications and continue monthly SPEP test. Since last October I have had a swollen area on my lower right leg. I had x-rays and consulted with my physician in San Antonio and they believe it is not related to MGUS/Myeloma. I believe it is a circulation issue related to the extra protein in my blood. I still have random bone pain, not consistent, but nevertheless still there. I have a follow up with my physician in San Antonio the 15th of July. It appears that my symptoms increase with hot weather? Not really sure. I still exercise regularly and work full time. I have enjoyed discussing this curse with many via email. I look forward to a 7 day Caribbean Cruise planned the end of October, and plan on retiring from the U.S. Marine Corps in the summer of 2005.
July, 2004 - February, 2005: During July of 2004 I visited my doctor in San Antonio, a quick visit with no medical procedures, just a review of previous blood work. We continue to monitor through bi-monthly SPEP and CBC test, focusing on the M-spike. No dramatic changes in blood results to this date. I continue to struggle with periods of pain in the hip and long bone area. These pains are not constant, but come and go. I suppose you all know, some days, weeks, and months are better than others. It's difficult not knowing what the future holds. I do my best to press on and live my life the best I can. I have received no serious medical care other than the normal work up (twice), for a second opinion, and I take no medications (routine Tylenol on those bad days). I retire after 23.7 years in the Marines this fall. Stay focused, stay tough!
March 2005 - December 2005: It's been a very busy time in my life as I have now retired from the U.S. Marine Corps and relocated to Panama City, Florida. A exciting yet busy period of selling a home and purchasing another with many miles between locations. Since my last entry I have continued to experience sporadic aches and pains throughout my body. I have continued to monitor the disease with monthly blood test sent to San Antonio. All that will change with my retirement and relocation. I will now see a Primary Care Manager who will "Farm" me out to a local oncologist for monitoring. I will search for someone with a MM background and bring him/her up to speed on the last three years. I have seen changes in my M-Spike and other CBC levels but nothing to indicate real disease progression at this time.
January 2006 - January 2007: No medical change in my condition. My PCM is the USAF and I am farmed out to a local Oncologist for check ups every six months at this time. He has a good reputation and is very familiar with MGUS/MM. My last M-Spike was up a little, but not to the point to sound an alarm. My adjustment to body and blood pains continues but I have no real limitations at this time. I have days where it's "in your face" obvious I have problems and days when things are subtle. I'm am due for a six month SPEP and CBC in March of 2007. I am enjoying the Florida sunshine and transitioning from the active ranks of the U.S. Marine Corps to the retired life. My oldest son, a Senior Airmen in the Air Force is getting married in April of 2007. I'm obviously glad to be here for such a special occasion in his life. Charge on......
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.
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