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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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Hi Sonny.
My name is Ralph and my dad has UPS. He is much older than you and was diagnosed in May of 2020 … but the one thing I can tell you is that you must remain positive and educate yourself on what’s out there.
Dad has been through radiation, immunotherapy and chemotherapy, with some surgeries in between. Currently, he is starting in a trial for a drug, Rogaratinib … It is an inhibitor for a protein (FGFR) that is the driver behind dad’s cancer.
The doctors are cautiously optimistic that he will have a good response from the drug… there are very few patients with UPS that are able to participate in the trial.
I hope by sharing his journey it will, hopefully, help you and others in some way.
Stay strong !!
Will keep in touch.
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5 ReactionsPlease ask. I will do my best.
My husband had the same type of tumor removed 27 years and was in great health. Also had radiation. The tumor reoccured 27 years later . Last time it was a one this time 2/3 , which is
not great news for him
. But for the last 27 years he was in great health . Do you have any symptoms? He was operated on at
Jackson Memorial
Hospital twice now with an amazing team of doctors , if you need any help . They saved his life twice .
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2 ReactionsHi, I have chondrosarcoma of the skull base also. It was just discovered 6 months ago and I'm starting to see that this is pretty rare. No surgery yet but I know it's coming. I hope you're doing ok and, if you're up for it, I'd like to ask you a few questions about your experience. No pressure though, I know it can be taxing answering questions.
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1 ReactionTry and get a 2nd opinion at a major cancer center such as MDAnderson, Mayo Clinic or Sloan Kettering. They see and treat so many more people with what you’ve got and their surgeons are more experienced. Good luck
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4 ReactionsKeep us posted.
I have had 2 different rounds of 2 different chemos
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3 ReactionsThank you! God bless you
I hope everything works out for you and your family. I have heard great things about MD Anderson.
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1 ReactionSonny,
Be positive and may God bless and keep you and your family in perfect peace. 🙏🏾🙏🏾🙏🏾
I was recently diagnosed with Sacroma /leiomyosarcoma and start chemo next week at MD Anderson. Be encouraged, pray and know that it will work out for your good!
🙏🏾🙏🏾🙏🏾
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4 ReactionsHi! My name is Sonny and I am a 49m living in Northern Nevada. I have been recently diagnosed with UPS, undifferentiated pleomorphic sarcoma. I had surgery to remove a tumor the size of 5.2 cm in my right upper thigh area. I am scheduled to have a pet scan and an mri next week so they can determine the next course of action, surgery or radiation.
This is all scary for me and my family. I have a wife and 3 girls 12 and under.
Any kind of guidance or inspirational talk would be great! Thank you
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1 ReactionIs there anyone who can give me information about the chemotherapy treatment involving Cyclophosphamide and the first few weeks of receiving it. What’s the norm if any what to look out for.