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 | Feb 24, 2023
In reply to @gemmalt "I’m so sorry to hear about your Mum. My Dad has sarcoma in both of husband..." + (show)
@gemmalt

I’m so sorry to hear about your Mum. My Dad has sarcoma in both of husband lungs and he’s never had radiotherapy - we’ve been told sarcomas are rare too and radiotherapy was not an option. We’ve been offered Trabectedin chemo which we know is not a cure but with the aim of stabilising the growth of tumours in the lungs. Can I ask which chemo your Mum had as I have read around the subject and there doesn’t be seem to be a lot of options in this area. We’ve been told without treatment Dad is looking at less than 12 months 😢. Take care xx

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I have spots on my lungs.
I have had 4 radiations and now eribulin chemo.

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1 reply
gemmalt | @gemmalt | Feb 24, 2023
In reply to @bicycle3 "I have spots on my lungs. I have had 4 radiations and now eribulin chemo." + (show)
@bicycle3

I have spots on my lungs.
I have had 4 radiations and now eribulin chemo.

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Keep strong, they wouldn’t give a Dad radiotherapy as he also has diffuse pleural thickening (from asbestosis) so have only offered Trabectedin he starts next week - I will also look into eribulin but I’m not sure if that’s approved in the UK
Take care and stay positive ❤️❤️

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sonshine161 | @sonshine161 | Feb 24, 2023

After removing my left lung which has a large tumor, i was diagnosed with sarcomatoid carcinoma. They also found the cancer is ALK positive. I have begun treatment with Alecensa, used in ALK positive metastasized lung cancer. I hope it works.

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amydunn | @amydunn | Feb 24, 2023

My grand daughter was just referred to an oncologist with them stating
There are two masses. The large one they believe is some type of malignant sarcoma (tumor in bone/tissue), And the smaller mass is a ganglion cyst. She’s 7, it’s as a result of an injury to her hand a year ago. I have no idea what I need to look into or prepare for.
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1 reply
Terriebikes | @bicycle3 | Feb 25, 2023
In reply to @zenbagel "Hi there, I was diagnosed with my first sarcoma in July of 2020. It was removed..." + (show)
@zenbagel

Hi there, I was diagnosed with my first sarcoma in July of 2020. It was removed along with my uterus. Subsequent scans of my pelvis found a different cluster of sarcomas in my stomach. So, because I also have neurofibromatosis, the only way to remove them is with a Whipple surgery. I also have pretty severe depression after watching my 19-year-old son die after a short battle with MPNST. Because he also had NF and where it was located, surgery was out. His battle with NF was horrific and "The worst case of NF the NIH has seen" according to Dr. Widemann. My other son also has NF and had bilateral optic gliomas, pseudoarthrosis of the tibia, and several benign brain tumors. He also has been diagnosed with an intellectual disability. We are hoping he gets to stay on disability. I was hoping to get disability because of my chronic pain, PTSD, ADHD, and severe obstructive sleep apnea. Both of my knees have pretty significant arthritis but the judge said no, despite years of records. Recently, they discovered an ulcer growing on one of the GISTs in my stomach. we are really struggling.

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Way too much for you to handle.
MAy God be with you all!

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1 reply
amydunn | @amydunn | Feb 26, 2023
In reply to @bicycle3 "Way too much for you to handle. MAy God be with you all!" + (show)
@bicycle3

Way too much for you to handle.
MAy God be with you all!

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May God bless you and yours. I’ll keep you in my prayers.

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joyismystrength | @joyismystrength | Feb 26, 2023

Hi. My husband was recently diagnosed with Epithelioid fibrosarcoma stage 4. He begins chemo on March 6th. I would appreciate any tips on how to best support him through this and how to deal with side effects etc. Thank you and God bless!

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1 reply
gemmalt | @gemmalt | Feb 27, 2023
In reply to @joyismystrength "Hi. My husband was recently diagnosed with Epithelioid fibrosarcoma stage 4. He begins chemo on March..." + (show)
@joyismystrength

Hi. My husband was recently diagnosed with Epithelioid fibrosarcoma stage 4. He begins chemo on March 6th. I would appreciate any tips on how to best support him through this and how to deal with side effects etc. Thank you and God bless!

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Hi - good luck to him, can I ask which chemo he will be starting? Dad has dermal sarcoma and is starting on Trabectadin on 9th March, thank you and let’s all think positively ❤️❤️ Xx

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1 reply
joyismystrength | @joyismystrength | Feb 27, 2023
In reply to @gemmalt "Hi - good luck to him, can I ask which chemo he will be starting? Dad..." + (show)
@gemmalt

Hi - good luck to him, can I ask which chemo he will be starting? Dad has dermal sarcoma and is starting on Trabectadin on 9th March, thank you and let’s all think positively ❤️❤️ Xx

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Hi! Good luck to you all also! He is starting Adriamycin on March 6th.

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brankad | @brankad | Mar 9, 2023

Hello,
I am diagnosed with MPNST. I had resection, chemo and x-knife radiation. Any experiences with this?

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