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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 6 days ago | Replies (840)

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@lhduvall

I had an aggressive lemon-sized (neuro?) fibrosarcoma of the abdomen in 1990, Stage IV, with very poor prognosis (nil). I was 33y with a toddler, living in upstate NY. The first surgery was not completed due to heavy blood loss. We moved in with my folks in CA, for childcare & proximity to treatment. I had 3 (7-8 day) courses of ifosfamide w/ mesna, then 5wks of radiation, followed by a successful (14 hr) surgery at UCLA. The tumor was a dead husk, and they were able to save all major organs. The sarcoma has not returned.
Best wishes for your chemo. Everyone’s reaction is different, some get the munchies, some can’t hold water down. Stick with the chemo, I think that’s what made the difference in surviving a ‘terminal’ diagnosis.
As for abdominal surgery recovery, it was about 2 yrs before I felt comfortable wearing pants with a waistband that zipped. Vitamin E cream and gentle scar massage has kept the scars smooth.

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@lhduvall, I'm so glad you are here to tell your story. It's an amazing one. And that toddler is now an adult.