I was diagnosed in May of 2005. I’ve been a visiting patient at the University of Arkansas since diagnosed.
In the first year I was given two rounds of VDT/PACE, collected my stem cells and then transplanted in September and December 2005.
Following the second transplant I was hospitalized with a respiratory illness and released right before Christmas. I was to have two more rounds(Consolidation) in 2006 but only had one more due to a hospitalization at home for diverticulitis.
I remained in remission for nearly three years when it returned as a plasmacytoma in my right tibia. I received radiation and chemo therapy for two weeks. As the bone was compromised I had surgery at home when the tibia broke. There were two surgeries to place metal in the leg, first one failed after physical therapy the metal broke because the bone had not healed. The second surgery put in more metal and screws but the leg became infected and I lost it above the knee. I was on many combinations of Revlimid, Cytoxan, Dexamethasone, then Pomalyst for one year and a half doing well then had a return in my collar bone and sternum.
I was on a 16 day metronomic treatment with a response but it returned in August of 2013. At that time I was put on Vidazia, and PAC-MED. My stem cells were transplanted as a boost.
In November my PET scan showed a return in the clavicle and sternum at which time a fine needle aspirate was done of one of the lesions in the clavicle.
I am currently on no drugs awaiting approval from my insurance company to start on Mekinist which is a drug used for Melanoma and which my cellular make-up has been tested and shown to be compatible to at least try this approach. In the meantime my Lambda light chain number is increasing and there is tenderness at the clavicular head where the myeloma is located.
— Claudia T.