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.

leahinaustin | @leahinaustin | Sep 3, 2024

In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)

Endometrial Stromal Sarcoma. Diagnosed in 2018 and radical hostorectomy the same year. Been on AI inhibitor since then. Anybody on an AI for 6 years?

bch0127 | @bch0127 | Aug 11, 2024

In reply to @sagan7 "Hi Leroy, I’m a 43 year old man who has been living with Kaposi’s Sarcoma for..." + (show)

I have recently been found to have Kaposi Sarcoma (March)
I am not of Mediterranean background (Irish)
Just beginning treatment & would like to continue conversation
Best
Bernie

sagan7 | @sagan7 | Aug 8, 2024

In reply to @leroy23 "Who can help me connect with someone specifically who has had HIV for over 10 years..." + (show)

Hi Leroy,

I’m a 43 year old man who has been living with Kaposi’s Sarcoma for the past 10 years. I don’t have HIV and my physicians believe I developed it due to my Mediterranean background. In all this time, I have never found anyone else with it and I would love to connect. Please reach out.

Colleen Young, Connect Director | @colleenyoung | Jul 29, 2024

In reply to @ronnie79 "Solitary Fibrous tumor sarcoma on my head. Diagnosed 11/2018" + (show)

Hi @ronnie79, you've been living with solitary fibrous tumor sarcoma for a while now. You're story and experiences would be welcome in this discussion:

- Solitary Fibrous Tumor: Anyone have experience with this?
https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/

Colleen Young, Connect Director | @colleenyoung | Jul 29, 2024

In reply to @sdsu "Yes, my husband. Stage 4 low grade fibromyxoid sarcoma is in his lungs. He is now..." + (show)

@sdsu, there are several members who have fibromyxoid sarcoma. Perhaps you'd like to start a new discussion in the Sarcoma support group dedicated to fibromyxoid. I'll be sure to bring the others into the discussion.

ronnie79 | @ronnie79 | Jul 24, 2024

Solitary Fibrous tumor sarcoma on my head. Diagnosed 11/2018

sdsu | @sdsu | Jul 22, 2024

In reply to @alias47 "Anyone been diagnosed with "Low Grade Fibromyxoid Sarcoma"?" + (show)

Yes, my husband. Stage 4 low grade fibromyxoid sarcoma is in his lungs.
He is now undergoing regular CT scans every 3 months to determine progression of disease and next steps.

muenchen1945 | @muenchen1945 | Jul 9, 2024

In reply to @colleenyoung "@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology? Cardio-oncology offers expertise..." + (show)

The infusion alone worked well - I had energy, stamina and felt st times almost normal. As soon as I had to add the oral meds I started feeling sick, no energy, dizzy, balance issues, lost a lot of weight in one week - informed my team and will take myself off the oral meds.

laurenmca3 | @laurenmca3 | Jul 8, 2024

In reply to @colleenyoung "@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology? Cardio-oncology offers expertise..." + (show)

Yes, I have a team including an oncologist, cardiologist, specialist in cardiology, palatine care, gastroenterologist, and now a kidney specialist since my kidneys are not in great shape due to heart meds. I receive immunotherapy (Keytruda) via port every six weeks