1. < Sarcoma
Moderator

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 18, 2022
In reply to @zamphiria "Hello, My 30yo cousin has extraskeletal osteosarcoma. It originated in her leg, but then metastasized to..." + (show)
@zamphiria

Hello, 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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Hi @zamphiria, your cousin is in good hands at Sloan Kettering. If you would like to consider a second opinion at Mayo Clinic, you can find more info here: http://mayocl.in/1mtmR63

How is your cousin doing on immunotherapy?

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Terriebikes | @bicycle3 | Dec 17, 2022
In reply to @ajb1938 "Thanks for your encouraging words@ May you have s Blessed Christmas filled with Peace, Joy &..." + (show)
@ajb1938

Thanks for your encouraging words@
May you have s Blessed Christmas filled with Peace, Joy & Love!!

❤🥰🙏❤🥰🙏❤🥰🙏

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This round of chemo and radiation on top of an infection seem more challenging.

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ajb1938 | @ajb1938 | Dec 16, 2022
In reply to @ellengrubb "Praying you’ll be blessed with positive experiences and interaction with friends and family. I too, have..." + (show)
@ellengrubb

Praying you’ll be blessed with positive experiences and interaction with friends and family.
I too, have soft tissue cancer - Synovial sarcoma in my calf. Had it removed and radiated. Am feeling great and at peace.

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Thanks for your encouraging words@
May you have s Blessed Christmas filled with Peace, Joy & Love!!

❤🥰🙏❤🥰🙏❤🥰🙏

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1 reply
timdale | @timdale | Dec 15, 2022
In reply to @rggj "Pleomorphic Liposarcoma. My life and perspectives changed when I heard those words. I learned to live..." + (show)
@rggj

Pleomorphic Liposarcoma. My life and perspectives changed when I heard those words. I learned to live my life in increments of three months, then six months, an now, a year. The C word just does that to you. Stay positive and live in the moment. It will never, not be on your mind from this point forward. But , you learn to live with it. I wish you all the best outcomes!

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I had liposarcoma 10 years ago. It never returned. Now I get CT scans every 4 years as a followup. Best of luck to you - I wish the same for you.

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Terriebikes | @bicycle3 | Dec 15, 2022
In reply to @ajb1938 "God Bless! Offer all your pain, anxiety, fear & discomfort to Jesus for healing grace's to..." + (show)
@ajb1938

God Bless!
Offer all your pain, anxiety, fear & discomfort to Jesus for healing grace's to bless others.
FOR HE IS THE WAY, THE TRUTH & THE LIFE! BY DOING SO YOUR PAIN WILL BE LESSENED & YOU WILL BE COMFORTED!!!
AMEN!
YOU ARE NOW ON MY PRAYER LIST!

GOD BLESS!
❤🙏❤🙏🙏❤🙏❤🙏❤🙏

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such a remimder!

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1 reply
Terriebikes | @bicycle3 | Dec 14, 2022
In reply to @sauer01 "Thank you Please post your continued journey. I have liposarcoma. Bless you also." + (show)
@sauer01

Thank you
Please post your continued journey. I have liposarcoma. Bless you also.

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Doxil chemo today.

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1 reply
rggj | @rggj | Dec 14, 2022

Pleomorphic Liposarcoma. My life and perspectives changed when I heard those words. I learned to live my life in increments of three months, then six months, an now, a year. The C word just does that to you. Stay positive and live in the moment. It will never, not be on your mind from this point forward. But , you learn to live with it. I wish you all the best outcomes!

REPLY
1 reply
sauer01 | @sauer01 | Dec 13, 2022
In reply to @ellengrubb "Praying you’ll be blessed with positive experiences and interaction with friends and family. I too, have..." + (show)
@ellengrubb

Praying you’ll be blessed with positive experiences and interaction with friends and family.
I too, have soft tissue cancer - Synovial sarcoma in my calf. Had it removed and radiated. Am feeling great and at peace.

Jump to this post

Thank you
Please post your continued journey. I have liposarcoma. Bless you also.

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1 reply
ellengrubb | @ellengrubb | Dec 13, 2022
In reply to @sauer01 "Just found out today that I have a soft tissue sarcoma. Thank you for the positive..." + (show)
@sauer01

Just found out today that I have a soft tissue sarcoma. Thank you for the positive words.

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Praying you’ll be blessed with positive experiences and interaction with friends and family.
I too, have soft tissue cancer - Synovial sarcoma in my calf. Had it removed and radiated. Am feeling great and at peace.

REPLY
2 replies
sauer01 | @sauer01 | Dec 12, 2022
In reply to @bicycle3 "Many thx!!!" + (show)
@bicycle3

Many thx!!!

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Just found out today that I have a soft tissue sarcoma. Thank you for the positive words.

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