I have uLMS. It was confirmed after total hysterectomy, appendectomy, and partial removal of my momentum in December, 2023. I am treated at Karmanos in Flint. I had radiation to my abdomen, which took care of a 3ml area of cancer. The cancer had metastasized to my lungs. The first chemo I was on was too strong for me; that and lung biopsy threw me over into sepsis. I was hospitalized extremely ill; I think they were surprised I survived. I remember being offered hospice or palliative care in the hospital and getting angry. I said no, I intend to fight. I had to insist on genetic testing. The first nurse forgot to send it in. I nagged about it and it turned out to be a Godsend. It showed i did have mutations that opened up a number of different treatment possibilities for me. I had a very determined PT out to the house. He got me from non-mobile to in my wheelchair to walking 50-60 feet in the house. My doctor was astonished how much I had improved in general condition. I was being treated for CHF by my cardiologist (a lot of treatments are hard on the heart), and a lot of diuretics to get rid of the tremendous amount of retained fluid. I lost 70 pounds of weight and fluid. I have other problems- My spine is fused s1-t12, I have osteoarthritis and fibromyalgia. Right now I am getting over what is probably a mild case of covid. My treatment right now is an ALK inhibitor called Alecensa. It is oral capsules twice daily. My kidney function is compromised and it went way down when I first went on it. This is my second go. I feel fine; bloodwork on Friday will tell the tale. I receive a lot of support from two online Leiomyosarcoma support groups on Facebook. One is focused a lot on education and research. There are some long term survivors on there who will definitely give you hope. I hope this helps.

@elainebr, how are you doing? Did further investigation confirm or rule out lung metastasis?