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Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
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I am sorry for what you are going through. Believe me, you are at the right place. I was diagnosed with Pleomorphic Liposarcoma in 2017. Because of the rarity of my condition I was referred to Rochester Mayo. Their ability to diagnose, confer, communicate and treat is nothing short of amazing. I wish you all good fortune going forward.
One day at a time!
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3 ReactionsPrayers to you and yours.
It is so disappointing to see cm increase!!!
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1 ReactionHi everyone. I was diagnosed in September with a malignant peripheral nerve sheath tumor on my lumbar spine. I completed 5 weeks of radiation a week ago, then had an MRI a few days ago which showed the tumor is a few cm larger than it was in Sept. Surgery is next but I have to wait for the skin on my back to heal from the radiation and also need a pacemaker because of a low heart rate.
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2 ReactionsWhat is the best treatment after surgery for ossifying fibromyxoid tumor.
I was just diagnosed with ossifying fibromyxoid tumor.
Wish I did.
I think you are at the best in research.
I use Doxil chemo and radiation.
And mental psych therapy.
Art therapy, and religious group therapy.
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3 ReactionsHello, My 30yo cousin has extraskeletal osteosarcoma. It originated in her leg, but then metastasized to at least 4 other areas of her body because of her lymphatic system. She underwent radiation to the original area in her leg and followed with chemotherapy, but by then it was found in the other locations. So now the doctors at Sloan Kettering are taking her off the chemo to do radioactive immunotherapy, which she says is to keep it out her vital organs for as long as possible.
Does anyone have any recommendations for doctors to give 2nd opinions or knowledge of any clinical trials that could her?
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2 ReactionsMy mom has no treatment plans yet. We haven't even heard from her doctors since surgery. I have a phone call into them, though.
Anyone else getting doxil chemo?
5 days of radiation?
other successful treatments?
my friend reminds me to keep up the pace but to set the timer to remember to take couch breaks
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