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?
Interested in more discussions like this? Go to the Sarcoma Support Group.
Hello, my name is Lisa.
My sweet daughter-in-law (Karla 27 yrs old) has just been diagnosed with synovial sarcoma. She is in the process of getting an appointment scheduled with MDAnderson Houston.
Try and stay strong, I know how you feel as my Dad went from having just a benign small skin tag taken off his back in dermatology to having multiple sarcomas in both lungs - there are some good treatments out there though. I just try to stay positive (as hard as it is), sarcomas are so rare that everyone is so different and what may not work for someone may work for others - mind over matter is a big thing too - good luck with everything. Dad started Trabectadin chemo last week, it’s low toxicity and touch wood has had only slight nausea which has been controlled with anti sickness tablets. This seems a long term option if it manages to stabilise/shrink the lung sarcomas, fingers crossed. Let us know how you get on xx
Good Luck, she has age on her side which is a good thing xx
Good luck I pray for you and your family.
Is 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.
Hi! 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
Sonny,
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!
🙏🏾🙏🏾🙏🏾
Thank you! God bless you
I hope everything works out for you and your family. I have heard great things about MD Anderson.
Keep us posted.
I have had 2 different rounds of 2 different chemos
Try 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