I was diagnosed with Leomyosarcoma 4 1/2 years ago. I’ve had two surgeries stereotactic radiation about six times. Two years ago it metastasized to my lungs then a year ago, to my bones. It started in my IVC vein over the abdomen. I was told in the beginning that chemo does not work on LMS and that surgery and radiation were the best options..
my last scan it metastasized to my pelvis and pancreas my oncologist suggested gemcitabine, which has had some success for LMS patients. It’s given intravenously three times a month in the hospital I’m very leery of any chemo so this is very hard for me. Trying to decide whether to do nothing and shorten my life or live with nausea, dizziness, etc.. The doctor says things will get really bad because the pancreas can cause chaos in your digestive system. Feels like I’ll never be able to stop thinking about this disease even though I want to getting tired and almost ready for it to be over.
I wish you luck and can totally empathize with what you’re going through. It’s a very difficult cancer. I send you my best for Massachusetts.🩷