Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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.

Colleen Young, Connect Director | @colleenyoung | Nov 1, 2022

In reply to @bicycle3 "Having trouble signing in to participate in zoom at 9pm for ostomy meet up." + (show)

Hi @bicycle3, I'm sorry I didn't see your message until now. I hope you were able to eventually sign into the Zoom ostomy meeting. It's still happening now. Please Join Zoom Meeting here
https://mchealth.zoom.us/j/99659580974?pwd=VUdyZ0dQVmdxd3lCd0s4S0JzbnVvdz09
Please contact Candy Boyes, ARZMCOSTOMYSG@mayo.edu if you need help in the future.

Terriebikes | @bicycle3 | Nov 4, 2022

In reply to @colleenyoung "Hi @bicycle3, I'm sorry I didn't see your message until now. I hope you were able..." + (show)

Did not sign in but now I have the knack, maybe next time.

Terriebikes | @bicycle3 | Nov 7, 2022

In reply to @rociovega "hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group..." + (show)

Try Galisano children's hospital in Rochester, NY?

Terriebikes | @bicycle3 | Nov 7, 2022

In reply to @bicycle3 "Did not sign in but now I have the knack, maybe next time." + (show)

Getting more radiation and chemo for growth on lungs.

Terriebikes | @bicycle3 | Nov 7, 2022

In reply to @mkoebs "My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being..." + (show)

Just discovered growths on lungs after abdominal growths which are more stable after radiation and chemo.

Terriebikes | @bicycle3 | Nov 7, 2022

In reply to @mkoebs "My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being..." + (show)

Please share link

mkoebs | @mkoebs | Nov 7, 2022

In reply to @bicycle3 "Just discovered growths on lungs after abdominal growths which are more stable after radiation and chemo." + (show)

Hi. I am sorry to hear about your latest health development. If I can be of any help, please reach out. Here is the Memorial Sloan Kettering sarcoma cancer support group application link. It’s free and takes a few weeks for approval:
https://www.mskcc.org/cancer-care/patient-education/sarcoma-group

Terriebikes | @bicycle3 | Nov 10, 2022

Thx.
Have new tattoos in prep for lung radiations on the 28th.
Chemo once a month starts tomorrow.
I usually fall asleep during Doxil infusion that takes almost an hour in a windowed cubicle with snack trays.