Leiomyosarcoma: What can I expect now?

@kkhersh hello. I too have leiomyosarcoma and had 2 nodules removed from my right lung on 3 October. I have been told that there is not any treatment except to keep removing nodules as they appear. I'm curious what your experience has been. I really appreciate your post as I feel like I'm floundering to get answers. Enjoy your day!

This is the first time I have reached out to anyone since being diagnosed. I have Leiomyosarcoma which was found in January 2023. At that time, they found a tumor on my left kidney and some spots on my lungs. I was setup for a lung biopsy locally, but it was cancelled because the doctors thought it was a fungal infection. The tumor on my left kidney was removed in March 2023 and I was setup to see a doctor at Mayo Clinic in April 2023. I began CT scans every six weeks and my Dec 2023 scan showed a shadow on my right hip. By March 2024, it was pronounced and a biopsy was completed at Mayo. They determined it was the same cancer as were the lung nodules that were being ignored. I was now stage 4. I started chemo in June 2024 (Doxorubicin). I had chemo every three weeks until Dec 2024. At that time I had reached the max I could take. CT scans since then have shown the cancer has doubled twice in my lungs. I am beginning to start another round of chemo. So far, I have tolerated the chemo well and have gained my strength back since stopping chemo in Dec. Original diagnosis was 18 to 24 months. I am now 28 months since my original diagnosis. Giving it all to God and praying I have more time with my children. Let me know if you have specific questions I can answer. Blessings! DEB

This is the first time I have reached out to anyone since being diagnosed. I have Leiomyosarcoma which was found in January 2023. At that time, they found a tumor on my left kidney and some spots on my lungs. I was setup for a lung biopsy locally, but it was cancelled because the doctors thought it was a fungal infection. The tumor on my left kidney was removed in March 2023 and I was setup to see a doctor at Mayo Clinic in April 2023. I began CT scans every six weeks and my Dec 2023 scan showed a shadow on my right hip. By March 2024, it was pronounced and a biopsy was completed at Mayo. They determined it was the same cancer as were the lung nodules that were being ignored. I was now stage 4. I started chemo in June 2024 (Doxorubicin). I had chemo every three weeks until Dec 2024. At that time I had reached the max I could take. CT scans since then have shown the cancer has doubled twice in my lungs. I am beginning to start another round of chemo. So far, I have tolerated the chemo well and have gained my strength back since stopping chemo in Dec. Original diagnosis was 18 to 24 months. I am now 28 months since my original diagnosis. Giving it all to God and praying I have more time with my children. Let me know if you have specific questions I can answer. Blessings! DEB

Was diagnosed with Leiomyosarcoma in the fall of 2021… Mass was on the IVC pushing into the liver. Two surgeries later I was NED for 3 years before it matastasized to the lungs. In the last year, I had three sessions of stereotactic radiation on the lungs and radiation on the IVC in a linac machine (mri machine w/ radiation ) . My Oncologists are working toward containment since it will eventually spread to a point where it can’t be treated. Been told that Surgery is the most effective with LMS .