Solitary Fibrous Tumor: Anyone have experience with this?

Posted by sftwife @sftwife, Mar 21 10:27am

Does anyone have experience with this? My husband had a giant SFT removed from his pleura.

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I have. I had a SFT rupture in my abdomen and removed in 2015.

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Hello! I’m sorry to hear that. May I ask how you’re doing? Do you have any advice for somebody who is new to this? My husband had a thoracotomy in February and they are recommending 6 weeks of radiation as he is high risk. He’s being treated at Levine Cancer Institute in Charlotte but we’re going to MD Anderson for a second opinion. Thank you!

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So unfortunately cells were left in my body and 6 months ago I had surgery to remove them (15+) all. Plus they removed my spleen and had a total hysterectomy since there were a lot there. I just started on immunotherapy to slow the growth of future ones down since the drs have been reading on some reports that chemo and radiation don’t seem to work. So he’s lucky it didn’t rupture. I live in California and was going to go to MD Anderson but feel very confident in my team of drs.

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@soso

So unfortunately cells were left in my body and 6 months ago I had surgery to remove them (15+) all. Plus they removed my spleen and had a total hysterectomy since there were a lot there. I just started on immunotherapy to slow the growth of future ones down since the drs have been reading on some reports that chemo and radiation don’t seem to work. So he’s lucky it didn’t rupture. I live in California and was going to go to MD Anderson but feel very confident in my team of drs.

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I’m sorry you’ve been through such an extensive surgery. I didn’t realize that an SFT could rupture. My husband had dirty margins so I imagine he also has cancer cells left in his body. Would you mind sharing more about your immunotherapy?

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That’s how I found it (emergency surgery in 2015). The ones in 2023 they weren’t concerned it would rupture again. Even though the one near my spleen was the biggest (a bit bigger than a softball). I ended up having surgery two months after finding them.
I am doing a form of Avastin (zirabev). Typically it works together with chemo but I am just doing the zirabev. I am 3 treatments in. Every 3 weeks for 12-18 months.

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Thank you for sharing. Would you mind if I messaged you directly?

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@sftwife

Thank you for sharing. Would you mind if I messaged you directly?

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Of course! How does that work?

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