Leiomyosarcoma: What can I expect now?
Diagnosed with Leiomyosarcoma back in August 2021. had surgery to remove mass in upper right groin that same month. July 29th second round of CT scans showed nodules on Right upper lung - had surgery to remove those on Sept 15.
What can I expect now ? - meeting with Medical oncologist next week .
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Hello jmg1, how are you doing? I was diagnosed in November of 2024 and so far NED. TBH, hearing that yours metastasized after three years sounds disconcerting. Did you feel anything different during those three years? Wishing you many blessings.
May want to discuss with your Oncologist the use of Immunotherapy. So folks have had some positive results with that treatment.
Hi Deb....GOD bless you, and wishing you many more years together with loved ones...❤️
As you've reached the limit of Doxorubicin, are you on Trabectidin or another chemo? Please let me know. Thanks, HUGS and best wishes on your journey with this...🌞❤️
Chris
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
Hello....I know your chemo journey is daunting!! Hopefully you're receiving all the support you need emotionally and physically 💗. While the physical and emotional challenges you're facing are difficult and unpredictble, there is hope, in that the "progression free" period following treatment can last up to 3 years or more....and maybe longer with trabectidin maintenance!! Wishing you more better days than any other on your chemo journey...❤️🌞
More of my journey, I am halfway thru my first cycle of chemo: doxorubicin/Tribectedin. It hasn't been too bad. four days of altered behavior and then back to waiting and dreading what's next. I am back to reading some Kate Bowler"s "everything happens for a reason". Maybe she can get me thru my current funk.
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 .
Hi this is Joanne. My primary was on the mysentry and was large and was crushing my small intestine near the connection to the stomach. I was experiencing a bowel obstruction at time of admission. It was an emergency surgery. It was taken out with negative margins but unfortunately it fractured on removal so they had to do a clean out of the debris. I was clear for my post-op scan (60 days after) but my second scan was vague about my liver. I had to have a liver biopsy and am awaiting results. If the LMS is confirmed I will probably start chemotherapy.
Curious about how they removed those nodules from your lungs, like surgery or chemo? And did you have a primary source of LMS somewhere else? I'm halfway through radiation treatments in order to shrink the mass before surgery (3"X3"X2.5") in my pelvis. Pain radiates down my left leg to below my calf muscle.
Hi Joanne...it was outside her uterus and hadn't impacted any other organs. Originally her surgeon suspected it was uterine cancer. My wife discovered it herself and had a ct scan, followed by surgery. Nothing about the tumor was known until the pathology was confirmed. Recent testing showed lung mets after 2 years of ned following her initial surgery. We're hopeful the Votrient will be effective. She has her quarterly visit to Mayo in a few weeks.
Best Regards
Chris