Myxoid liposarcoma in right thigh

Aurasola

Myxoid liposarcoma for 20 years

I first felt a lump in my ankle in 1996, but my internist insisted it was a lipoma. A year later I asked my dermatologist to biopsy it (it seemed pretty superficial, and I have small ankles). Biopsy came back as lipoma. In 1999 the lump grew to the size of a lemon and began to hurt as I was carrying more weight during pregnancy. An orthopedist suggested Elavil for nerve pain (lump was pressing on nerve) but finally agreed to MRI which showed the lump was possibly a hematoma. Orthopedist finally removed the lump which was 12 cm myxoid liposarcoma by then. Went to MD Anderson and had a revision surgery to try to get clean margins, and a 6 wk course of radiation during third trimester of pregnancy. Oncologist proposed AIM chemo after delivery but I refused. Seven yrs later my first met showed up on screening chest CT (4cm mediastinal mass) so I had 6 cycles of AIM chemo, surgery and then 6 wks radiation. Three yrs later, second met in pelvis detected on screening abdomenal CT, inoperable because too close to sciatic nerve/spine, was radiated 6 wks. A year later in 2011 met on left kidney was surgically removed. In 2013, a met adjacent to my cervical spine caused severe headaches but neurosurgeon felt radiosurgery would be better, however that met began to regrow in 2015. At the same time I discovered a lump on my hip, a 5 cm met that had been missed on my screening CT's at MDA. Started trabectedin (Yondelis) in March 2015 and have now received 48 cycles of that. Mets have shrunk on trabectedin but side effects of fatigue, anemia, fever, nausea have kept me from working and have become severe enough to where I'm considering stopping trabectedin next March after a total of 5 years. My daughter who was born after I was diagnosed is now in college. I'm 63 now but hope to keep on surviving. Wanted to post my story because I've had alot of different treatments and am happy to answer any questions.