1. < Sarcoma

Leiomyosarcoma: What can I expect now?

Posted by kkhersh @kkhersh, Oct 10, 2022

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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blessed08 | @blessed08 | May 28 10:57pm
In reply to @jmg1 "Was diagnosed with Leiomyosarcoma in the fall of 2021… Mass was on the IVC pushing into..." + (show)
@jmg1

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 .

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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.

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kenc | @kenc | May 21 3:08pm
In reply to @dwagam0n "This is the first time I have reached out to anyone since being diagnosed. I have..." + (show)
@dwagam0n

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

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May want to discuss with your Oncologist the use of Immunotherapy. So folks have had some positive results with that treatment.

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ctflyr | @ctflyr | May 21 8:22am
In reply to @dwagam0n "This is the first time I have reached out to anyone since being diagnosed. I have..." + (show)
@dwagam0n

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

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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

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dwagam0n | @dwagam0n | May 20 1:30pm
In reply to @luna6922 "@kkhersh hello. I too have leiomyosarcoma and had 2 nodules removed from my right lung on..." + (show)
@luna6922

@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!

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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

REPLY
2 replies
ctflyr | @ctflyr | May 6 6:43pm
In reply to @jeshaw6801 "More of my journey, I am halfway thru my first cycle of chemo: doxorubicin/Tribectedin. It hasn't..." + (show)
@jeshaw6801

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.

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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...❤️🌞

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jeshaw6801 | @jeshaw6801 | May 5 3:47pm
In reply to @jeshaw6801 "Hi this is Joanne. My primary was on the mysentry and was large and was crushing..." + (show)
@jeshaw6801

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.

Jump to this post

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.

REPLY
1 reply
jmg1 | @jmg1 | May 5 3:17pm

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 .

REPLY
1 reply
jeshaw6801 | @jeshaw6801 | Mar 27 1:02pm

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.

REPLY
1 reply
chuckeg | @chuckeg | Mar 26 12:15pm
In reply to @luna6922 "@kkhersh hello. I too have leiomyosarcoma and had 2 nodules removed from my right lung on..." + (show)
@luna6922

@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!

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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.

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ctflyr | @ctflyr | Mar 25 9:36am
In reply to @jeshaw6801 "Hi, this is Joanne, My doctor didn't recommend them. I was familiar with GIST type of..." + (show)
@jeshaw6801

Hi, this is Joanne,
My doctor didn't recommend them. I was familiar with GIST type of sarcoma and they always ask for genomic sequencing so I asked to have it as well And then because their is speculation that my r-LMS could have been from a parasitic fibroid (myeloma) I also asked for receptors identification.
Where was your wife's tumor? Mine generated from the mesentery
https://images.app.goo.gl/AcpjJBCAZFffC63s6
I had one clean scan post surgery and tomorrow I have a liver biopsy to rule out potential liver met.

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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

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