Mets returned?

My daughter was diagnosed with undifferentiated soft tissue sarcoma Dec 09 w mets to lungs and liver. In May of this year, her lungs and liver were finally clear but a small level of metabolic activity remained in the primary tumor. On Thursday of last week we were told that there are 5 new tumors in her lungs BUT that the primary tumor is now DEAD! She was so close and this setback is frustrating to say the least.

Has anyone else gone thru this? Where the sarcoma (primary tumor and mets were gone) and then more tumors popped up in the metastatic sites? We will be working with both the conventional oncology team from Children's in Oakland and Reno as well as her Naturopath/Holistic doctor in Oregon. I am just glad that they are collaborating and I wouldn't have it any other way. We are talking about using Rapamycin and Celebrex along with Itraconazole (all three have been used in clinical trials for sarcoma and lung metastases).

Comments

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  • I'm so sorry for all of you. I'm really gald to hear that your entire team is working together. It definitely makes things easier on you too.
    My docs did warn me about mets long after the primary tumor is gone. My tumor was able to be completely removed in surgery, but they're still watching me closely for mets to my lungs.
    The sad thing is that she's been there before, but that's also a great thing. She's been there before and come out on the other side. Keep fighting and keep us posted.

    Love and Luck,
    Summer
  • My doctor also said that the mets could come in 10+ years after the primary is gone. Who knows when it will pop up again.
  • Yes, we have been told a few times that the cancer will most likely always come back in the metastatic sites (which for Lauren was her lungs and liver). Sarcoma loves warm wet places =)

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