Elko, Nevada; email@example.com
1964 / Class of 2004 / Type: IgA Kappa Light Chain / 2x SCT, remission / Updated: 1/09
I was born in Montana and currently reside in Elko, Nevada. I have been working underground in a gold mines for the past 11 years. Healthwise -- usual childhood diseases, no broken bones and a few minor surgeries.
I was diagnosed with Multiple Myeloma in January 2004. I was originally plagued with a skin disorder called Pyoderma Gangrenosum. Basically, I had lesions on my left shin that did not heal. I was treated by a dermatologist for about a year and half with injections of kenelog and cyclosporin (neoral). The sores would generally start with a small cut and grow larger. Each one eventually went away. After the last one erupted spontaneously, I decided to seek a second opinion. The dermatologist at the University of Utah in Salt Lake ordered a blood test which showed an elevated IgA level.
More tests were completed in December 2003 including a Bence-Jones urine test, skeletal survey and a bone marrow biopsy. In January 2004, my wife and I met with a hematologist/oncologist at the Huntsman Cancer Institute in Salt Lake. The diagnosis was Multiple Mycelia. The bone marrow biopsy had revealed 30% plasma cells but the skeletal survey showed only "ill defined lesions" in the skull that "could not be excluded". My IgA level was 2100 g/dl and an M-spike that accounted for 2.35 g/dl of the 2.63 g/dl of the monoclonal protein in the beta region . At this time, I began taking Thalidomide and Dexamethasone and stopped taking the cyclosporine. After two months of treatment, my IgA level decreased to 919 g/dl and the M-spike decreased to 0.87 g/dl of the total 1.48 g/dl of protein. I stayed on the Thalidomide for close to five months. Towards the end of June, another biopsy was done, and the results showed a slight drop in the amount of plasma cells -- 23% to 25% -- and my IgA level had raised a little and stabilized at 1010 and the M-spike had stabilized at 0.89 g/dl.
A central line was placed in early July, and close to 20 million stem cells were harvested on July 12 and 13. I will be admitted into the BMT unit at the University of Utah Hospital on August 2 for the start of a tandem transplant. My only brother was not a match for a possible (future) allogeneic transplant.
August 26, 2004: I have been home for a week after having started the first of two transplants on Aug 2. It all started with a Melphalan infusion, followed by a day of rest, and then ending with the infusion of 4.22 million stem cells. My prayers were answered with regards to my health during my stay. I never did get any mouth sores and had only a slight sore throat. I was nauseous quite often, but ativan helped out quite a bit. The nurses scared me into some great oral hygiene. I brushed and rinsed many times a day. I only vomited once, and I know that was due to that nasty rinse. I spent about 4 days with the TPN bags, and started eating more than just Popsicles, with a little help from medication. It looked like a platelet transfusion might be needed, but that ended up not being necessary.
The doctors told me on the 15th that I was starting to engraft. They let me out of the hospital on Aug 16, with the intention of having me stay around Salt Lake City for one to two weeks. I went back in on the 18th for a blood draw. They called later on that day and said that the results showed that I was doing very well and that I could go back to Elko. It was great to be home for the kids' first day of school. I still need to wear my mask a lot and worry about the kids bringing home a virus or some bacteria from school. I went back for a checkup on the 25th and the results of my blood work showed a white blood cell count of 6.04 and a platelet count of 239. For now it is stay healthy and wait until the first of October to begin my second transplant.
November 9, 2004: I have been home a little over two weeks following my second transplant. My wife and I met with the BMT doctor a few days before transplant and received some really good news. My current IgA level was 227 mg/dl compared to 1010 and current bone marrow shows 1.9% plasma cells compared to 23.7% in June 2004. My B-2 microglobulin dropped from 2.8 mg/L to a current value of 1.6 mg/L. The procedure went the same as the first: chemo, day of rest, then 4.22 million stem cells. I tolerated this transplant the same, if not a little better than the first. I engrafted on the 10th day. Lots of Ativan and Marinol allowed me to avoid the TPN bags. Two weeks and I was out of the hospital.
A week after I was released I went back and had my central line (Hickman) removed. It was real nice not having to worry about that anymore. As of now, I am waiting at home for 60 days post-transplant to arrive. I will need to go back December 9 for another round of tests and one more bone marrow biopsy. At this time I will also receive news about the clinical trial that I agreed to be a part of. I will either just be monitored for a year or take Thalidomide and Dexamethasone for a year. I tolerated the Thalidomide last time I was on it.
January 25, 2005, Remission: It is now 100 days post-transplant on my second stem cell transplant. Here are some numbers that may be informative and helpful to others: B-2- microglobulin is 1.5mg/L, IgA level is 131 mg/dL urine free kappa light chains are 2.13 mg/dL down from 117.25 , total protein in my urine is 89 mg/day down from 2,951 in July 2004 and bone marrow aspirate shows 1.4% plasma cells, a cellularity of 30%, and flow cytometry shows a very small population of CD56 positive monoclonal plasma cells representing 0.2% of the leukocytes.
Cytogenetics show a constitutional translocation between chromosomes 3 and 4 and the FISH study is negative for the trisomy 13.
In summary, the doctors were pleased with my response to therapy with only minimal evidence of residual disease. I go back to see my Hem/Onc in February. I am back working (underground) and have managed to avoid becoming sick during this cold and flu season. It is nice to get back to a normal routine. The Good Lord and the great people at the BMT unit made all of this possible. My goal now is to be a long-term survivor and see my three young kids graduate from high school.
November, 2005: I just got back from my one year check-up after seeing both my Hem/Onc and the BMT doctors. All is well!
My Hem/Onc called it a full remission and I will take his word for it. I donít spend a lot of time thinking about this disease. Life is too short to do that. I try to devote that time to spending it with my wife and children. I know it will come back at some time and we will just deal with it when it happens.
January, 2009: I havenít had any issues since I last updated my story. Things are going well and I only see my Hem/Onc every 6 months for a check-up that involves the usual blood work and a Bence-Jones urine test.
I have received a fair amount of e-mail from people with questions regarding my illness and recovery. If I can help anyone in any way, please feel free to send an e-mail.
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