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Colleen Young, Connect Director avatar

Talking Frankly about Living with Advanced Cancer

Cancer | Last Active: 3 days ago | Replies (558)

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Profile picture for jeshaw6801 @jeshaw6801

I don't mind sharing.
I have one of the rare sarcomas: leiomyosarcoma (LMS). No symptoms , no weight gain until one day, I couldn't keep anything down. It runs out I had a large retroperitoneal tumor causing a small intestine bowel blockage. Needless to say they excised the tumor. I was then listed as no evidence of disease ( NED) with a CT scan schedule every 180 days.
I had my baseline scan in December and in March a very aggressive lesion on my liver was detected. In the month to get a biopsy, get a port, and a electrocardiogram and other tests ;they did another scan and my lesion had doubled and now I had three lesions. I started chemo with the std for care of LMS in April and am now on my 6th and final cycle with doxorubicin/tribectedin regimen. Next week I go on maintenance chemo with just Tribectedin. In October they will do another scan to see if I am in "stable" condition. Every scan has shown an impressive reduction of the lesions. One is no longer detectable. I am going to ask the chemo/oncology board , after I am stable for two rounds of CT scans if resection of the liver is possible to remove the remnants of those lesions . Altho I have been fatigued by the chemo I still do not exhibit any symptoms from the cancer. I can tell my white counts are low because if I get scratched or cut or a hangnail they get infected and require antibiotics .

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Replies to "I don't mind sharing. I have one of the rare sarcomas: leiomyosarcoma (LMS). No symptoms ,..."

Thank you for sharing your experience…I’m crossing my fingers that your October scan shows further reduction of the lesions and you can have the liver resection. Sending good thoughts….