Monday, January 26, 2009

Summary June 2001 to January 2009

Here is a summary of my MM story from diagnose in June 2001 to now January 2009.
I was diagnosed with MM stage III IgG kappa in June 2001. At diagnose I had extensive bone involvement including 3 fractured ribs, one collapsed vertebrae and one partially collapsed vertebra. Two weeks after diagnose I developed a DVT in my right calf which soon cleared with the help of warfrin. A DVT is not uncommon for MM patients. Initial treatment was VAD (Vincristine, Adriamycin and Dexamethasone) and the bisphosphonate Aredia and after 4 months I had a good response to both. This was followed by a stem cell collection which gave me enough stem cells for two transplants. In November 2001 I developed a retinal vein thrombosis in my right eye which was MM related. The symptoms were blurred vision which fortunately cleared by 3 months.
In December 2001 I had an autologous stem cell transplant and again a good response which led me into the plateau stage.
At the beginning of the plateau stage I was on interferon which caused no problems initially but I soon became progressively depressed. Depression is one of the side effects of interferon and for me stopping the interferon eliminated the depression.
In March 2005 I developed another retina vein thrombosis, this time in my left eye which followed the pattern of the previous one, blurred vision which again fortunately cleared by 3 months.
All was fine until September 2006 when I suffered a pathological fracture of the left mid shaft humerus which required surgery, a full length rod and pins (titanium prosthesis) followed by radiation to kill off any MM. My IgG level increased at this stage but reduced after radiation.
It was then decided that I would benefit from maintenance therapy of a low dose of Thalidomide. All was well for eight months when I started to feel the dreaded peripheral neuropathy in my finger tips, the sole of my feet and in the toes. After another four months the neuropathy had increased so the dosage was reduced giving a small reduction in neuropathy. It soon increased again so I stopped the Thalidomide. The neuropathy has since reduced but I can still feel it in the soles and toes.
In November 2007 my IgG levels started rising accompanied by pain in my right humerus, the start of my disease relapse. A lytic lesion was developing in my right humerus, radiation decreased the pain but the IgG levels kept increasing.
A discussion on further treatment came to the conclusion that a second stem cell transplant was the best option. This was scheduled for July 2008 but delayed one month for other urgent cases. By the time I entered The BMTU I was suffering MM pain in the spine, ribs and right humerus. My right arm had to be kept in a sling to prevent a breakage.
Eight weeks after the second transplant I had surgery on my right humerus, a full length rod and pins (titanium prosthesis).
The 100 day post transplant #2 tests have come in successful. Yeeeeehaaaaa!!!!!!!!

BMTU: Bone marrow transplant unit
DVT: Deep vein thrombosis.
IgG: Proteins produced by plasma cells.
MM: Multiple myeloma, a cancer of plasma cells that usually arises in the bone marrow.
Plateau: When myeloma is stable. A period of stability.
Prosthesis: Artificial body part such as a limb.


Jeana Brooks said...

My father was just diagnosed with Stage III MM. Hearing that you are Stage III as well as still fighting this fight nine years later gives my family hope.

urnsbay said...

My bf was just diagnosed with MM, but we've not been told anything about stages - in face we were told that there are no stages in MM. He is scheduled for a biopsy in a week or so, maybe then we will be told more?