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Uterine leiomyosarcoma with lung metastasis: Treatment options?

Posted by westerncanuck @westerncanuck, Oct 23, 2024

Dec 2023 10cm fibroid that by March 2024 resulted in full hysterectomy and uterine leiomyosarcoma diagnosis. May x-ray clear however new Oct CT 5months shows 35 lung lesions. Some 1x2 cm. Bloodwork normal. Lung function exactly the same. I feel fine -but apparently I'm not. Is anyone familiar with leiomyosarcoma metastasizing to the lungs ? Has it been that fast? What options are available ? Is there any new research that is promising ? Why do I feel fine ? What else can I do?

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mcwjr189 | @mcwjr189 | 2 days ago
In reply to @jmg1 "In September 2021 is was diagnosed with Leiomyosarcoma in my IVC. Had two surgeries back to..." + (show)
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In September 2021 is was diagnosed with Leiomyosarcoma in my IVC. Had two surgeries back to back since the first one was diagnosed incorrectly as a common benign tumor. Fortunately, a late pathology report came back positive so two weeks later I was back on the table . I started scans and mri’s every three months and was NED (No evidence of disease) for two years. Then LMS metastasized to my lungs..starting with several tumors in the lungs and on the IVC. Was told surgery (not available now) and radiation were the best option. A year later more tumors grew in the lungs so another round of radiation. I started seeing a pulmonologist because of radiation fibrosis.
I continued with scans and was NED for another year and a half before it metastasized to my bones specifically the spine.
I start radiation to my spine tomorrow.

LMS can be very fast and sometimes it’s a little slower. It also is very tricky and not consistent from person to person for the most part. I go to a support group and there’s another person with LMS who has had a similar trajectory the goal of the doctors is containment and a good quality of life.
I’ve had very little pain or symptoms over the last four years and quality of life is my focus. Staying positive and dealing with all the anxiety is now my life’s work. Find support..it really helps.

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@jmg1 I was diagnosed with a sarcoma in my liver and had it surgically removed in Oct 2021. It was a malignant solitary fibrous tumor. So rare no one knew how to treat it. Of course chemotherapy was recommended. I opted for quality of life and tried a metabolic approach. In Oct of 23 it had metastasized to my right lung. I had a robotic lung resection. It later appeared in both lungs. Lucky I heard about Immunocine and received Dendritic Cell Therapy in Nov of 24. Have felt good the whole time! Check it out at Immunocine.com

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keirahaley | @keirahaley | 2 days ago
In reply to @mcwjr189 "I have a malignant solitary fibrous tumor in my lung and seeking treatment with dendritic cell..." + (show)
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I have a malignant solitary fibrous tumor in my lung and seeking treatment with dendritic cell therapy at Immunocine . Com. It sounds very promising.

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@mcwjr189 how is that treatment going so far? ❤️🙏🏼

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mcwjr189 | @mcwjr189 | 2 days ago
In reply to @keirahaley "@mcwjr189 how is that treatment going so far? ❤️🙏🏼" + (show)
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@mcwjr189 how is that treatment going so far? ❤️🙏🏼

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@keirahaley so far so good. I received a booster vaccine in October and an immunotherapy treatment as well. I can tell my body is engaged in a battle but am optimistic

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keirahaley | @keirahaley | 2 days ago
In reply to @mcwjr189 "@keirahaley so far so good. I received a booster vaccine in October and an immunotherapy treatment..." + (show)
Profile picture for mcwjr189 @mcwjr189

@keirahaley so far so good. I received a booster vaccine in October and an immunotherapy treatment as well. I can tell my body is engaged in a battle but am optimistic

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@mcwjr189 oh wow! I’m sending you so much good vibes! I’ve been trying so many things and I just don’t know if anything is working. Little things seem to keep appearing, yet I’m told I’m mostly stable but it’s confusing to discover new small lesions… so I’m uncomfortable taking the wait and see approach … I’ve submitted an application to immunocene, will you let me know how it’s going for you?

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keirahaley | @keirahaley | 2 days ago
In reply to @mcwjr189 "@keirahaley so far so good. I received a booster vaccine in October and an immunotherapy treatment..." + (show)
Profile picture for mcwjr189 @mcwjr189

@keirahaley so far so good. I received a booster vaccine in October and an immunotherapy treatment as well. I can tell my body is engaged in a battle but am optimistic

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@mcwjr189 also, may I ask your type of C? I’m low grade ovarian serous carcinoma, IV 🙁

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mcwjr189 | @mcwjr189 | 1 day ago
In reply to @keirahaley "@mcwjr189 also, may I ask your type of C? I’m low grade ovarian serous carcinoma, IV..." + (show)
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@mcwjr189 also, may I ask your type of C? I’m low grade ovarian serous carcinoma, IV 🙁

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@keirahaley
I started with a very rare malignant solitary fibrous tumor in my liver which has metastasized to my lungs. My cancer is a sarcoma

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keirahaley | @keirahaley | 1 day ago
In reply to @mcwjr189 "@keirahaley I started with a very rare malignant solitary fibrous tumor in my liver which has..." + (show)
Profile picture for mcwjr189 @mcwjr189

@keirahaley
I started with a very rare malignant solitary fibrous tumor in my liver which has metastasized to my lungs. My cancer is a sarcoma

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@mcwjr189 gosh, sorry your going through it too, thank you for sharing! Immunocene looks like it could be great! I’m optimistic too. Hope to check in with you soon about your experience 🙂

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