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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.

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Terriebikes | @bicycle3 | Nov 13, 2022
In reply to @bicycle3 "Many thx First chemo in the books. The couch is calling me?😊" + (show)
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Many thx
First chemo in the books.
The couch is calling me?😊

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Left hip is more sore now. Maybe from.inctrased yoga,!?!?

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mar4 | @mar4 | Nov 12, 2022
In reply to @mkoebs "Keeping you in my prayers! I hope all goes well. Hang in there!!" + (show)
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Keeping you in my prayers! I hope all goes well. Hang in there!!

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Thank you. And I wish you good luck also

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Terriebikes | @bicycle3 | Nov 11, 2022
In reply to @mkoebs "Keeping you in my prayers! I hope all goes well. Hang in there!!" + (show)
Profile picture for mkoebs @mkoebs

Keeping you in my prayers! I hope all goes well. Hang in there!!

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Many thx
First chemo in the books.
The couch is calling me?😊

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1 reply
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mkoebs | @mkoebs | Nov 11, 2022
In reply to @bicycle3 "Thx. Have new tattoos in prep for lung radiations on the 28th. Chemo once a month..." + (show)
Profile picture for Terriebikes @bicycle3

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.

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Keeping you in my prayers! I hope all goes well. Hang in there!!

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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.

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

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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

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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)
Profile picture for mkoebs @mkoebs

My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being cancer free several spots were seen in my lungs. I’ve had surgery to remove the two largest nodules a few months ago. Now just waiting anxiously until the next CT scan to see if other nodules have grown and can be surgically removed. I’ve joined a sarcoma cancer support group (virtually) hosted by Memorial Sloan Kettering and would be happy to share the link to application if you’re interested.

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Please share link

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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)
Profile picture for mkoebs @mkoebs

My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being cancer free several spots were seen in my lungs. I’ve had surgery to remove the two largest nodules a few months ago. Now just waiting anxiously until the next CT scan to see if other nodules have grown and can be surgically removed. I’ve joined a sarcoma cancer support group (virtually) hosted by Memorial Sloan Kettering and would be happy to share the link to application if you’re interested.

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

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1 reply
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Terriebikes | @bicycle3 | Nov 7, 2022
In reply to @bicycle3 "Did not sign in but now I have the knack, maybe next time." + (show)
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Did not sign in but now I have the knack, maybe next time.

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Getting more radiation and chemo for growth on lungs.

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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)
Profile picture for rociovega @rociovega

hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group searching through the internet since we are in shock and desperate looking for an answer or guidance because we do not know where to turn for this situation. My 4-year-old little cousin has been diagnosed with osteosarcoma in her bones, the news has been devastating, but according to the studies that have been done, the spots have appeared quickly on both of her legs. I would like help on where to go, in Mexico attention is precarious and in the country's capital the wait is very long for an appointment, I think we should act as soon as possible but we feel our hands are tied.

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Try Galisano children's hospital in Rochester, NY?

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