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Seeking clear cell sarcoma patients

shar82
Posts: 1
Joined: Apr 2011

My 47 year old husband had a suspicious blockage of his small intestines three and a half years ago that ended up being a small acorn-sized clear cell sarcoma. It was removed, and he was watched for almost two years and then another fist-sized one showed up in its place. Went to IU (Indy) and met with specialist who recommended 5-6 rounds of two different types of chemo. Tumor (amazingly) shrank and it was removed, along with two and a half feet of small intestines, at IU in December of 2010. Complications from surgery, inability to gain weight, went in for another bowel resection in March of 2011, and unfortunately, scans showed that sarcoma was back in liver and on the outside walls of small intestines. Getting ready for second round of chemo next week. Just beside ourselves. Anyone out there that we can communicate with? I am a heart patient myself and have had lots of others to talk to, but he has no one. We really need to hear from others. Thanks to all of you who respond.

hannahknight
Posts: 1
Joined: May 2012

hello my name is hannah knight i was diagnosed with clear cell sarcoma december of 2011 i have wanted to talk or meet someone who has this cancer for soooooo long. I was 18 years old when i was diagnosed now im 19. I have never met anyone and i would love to hear back from you im still trying to figure out what exactly can happen 2 me if it comes back but rite now i have made it past my first year and praying i make it much longer please write me back i would LOVE 2 hear from u:]]

AliciaGon
Posts: 10
Joined: Oct 2013

Hi Hannah I too have been dx with this hear for you.

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