1. < Sarcoma
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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.

Terriebikes | @bicycle3 | Nov 1, 2022
In reply to @bicycle3 "I take pain pill every 4 hours. Also one that is slowly released. Also tylenol every..." + (show)
@bicycle3

I take pain pill every 4 hours. Also one that is slowly released. Also tylenol every 8 hours.
I am able to attend my weight training classes and dance classes and yoga all at the Y as I modify. Cycling and swimming are other loves. I have cycled on the flat Erie Canal trail and will try swimming this week. The ileostomy is my concern in the water.
The chemo made my hands and feet a bit crusty. My hair falls out a bit at a time so
I hardly notice it. It is not growing or thick as it used to be.
We will measure the largest tumor on the 31st to see how it is growing or?!?!?

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Having trouble signing in to participate in zoom at 9pm for ostomy meet up.

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1 reply
Moderator
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)
@bicycle3

Having trouble signing in to participate in zoom at 9pm for ostomy meet up.

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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.

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1 reply
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)
@colleenyoung

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.

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

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

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 @mkoebs "My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being..." + (show)
@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
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)
@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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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)
@bicycle3

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 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
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)
@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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