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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.

nanee1 | @nanee1 | Feb 11 10:36am
In reply to @nanee1 "I just wanted to let you know that my latest scan also showed that my cancer..." + (show)
@nanee1

I just wanted to let you know that my latest scan also showed that my cancer is still contained. Chemo really did a good job for me. Oncologist switching me to pills as soon as the Insurance approves. Keep a positive attitude, no negative thoughts allowed. Keep me informed.

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I also am wondering if anyone has been treated with Voltrient for their sarcomas? It seems complicated and also many side affects.

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skullbasecancer4 | @skullbasecancer4 | Feb 5 9:30am
In reply to @ksnozal "Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29..." + (show)
@ksnozal

Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29 diagnoses in the world, today it’s around 120, but that’s still a very small number. With the disease being so rare and new, we have limited data and treatment options.
The Sarcoma I have is Metastatic Gastrointestinal NeuroEctodermal Tumors. I posted a message about this disease a few weeks back to see if anyone else out there has it. It would be nice to be connected with other patients that have it or other Sarcoma survivors as well. Kris

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Hi. My husband was diagnosed 27 years ago with a chondrosacroma of the skull had surgery and radiation but it returned this past year . He had surgery again but could
Not get it all because it was to close to curated artery and can’t do radiation and chemo . We just wait to see what happens next . It more aggressive this time . He is scanned every 6 months . We go to the the University of Miami for all treatment . Where do you go ? How do you feel? I have been trying to connect with other s, who had his type too, but it’s impossible. I wish you only the best and what type of treatment and or surgies have you had . He is 57 now .

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ksnozal | @ksnozal | Feb 4 8:15am

Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29 diagnoses in the world, today it’s around 120, but that’s still a very small number. With the disease being so rare and new, we have limited data and treatment options.
The Sarcoma I have is Metastatic Gastrointestinal NeuroEctodermal Tumors. I posted a message about this disease a few weeks back to see if anyone else out there has it. It would be nice to be connected with other patients that have it or other Sarcoma survivors as well. Kris

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2 replies
nanee1 | @nanee1 | Feb 3 5:23pm
In reply to @casgarcia "Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle..." + (show)
@casgarcia

Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle under his right arm. His tumor grew to 900 grams in 3 months, explosive growth, treated with surgery and radiation in October 2022. It has resurfaced in his right axilla and there is a suspicious lesion in his left lung. Started chemotherapy this week. He is 44 years old. I retired in Merida, Mexico. When he was diagnosed he didn't have health insurance so he flew to Merida where he got FAST skilled excellent medical care. Now he has BCBS Florida insurance and it looks like we'll be able to use it here to defray the cost of chemotherapy.

Jump to this post

I just wanted to let you know that my latest scan also showed that my cancer is still contained. Chemo really did a good job for me. Oncologist switching me to pills as soon as the Insurance approves. Keep a positive attitude, no negative thoughts allowed. Keep me informed.

REPLY
1 reply
nanee1 | @nanee1 | Feb 3 5:15pm
In reply to @casgarcia "Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle..." + (show)
@casgarcia

Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle under his right arm. His tumor grew to 900 grams in 3 months, explosive growth, treated with surgery and radiation in October 2022. It has resurfaced in his right axilla and there is a suspicious lesion in his left lung. Started chemotherapy this week. He is 44 years old. I retired in Merida, Mexico. When he was diagnosed he didn't have health insurance so he flew to Merida where he got FAST skilled excellent medical care. Now he has BCBS Florida insurance and it looks like we'll be able to use it here to defray the cost of chemotherapy.

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Let me know if you receive the picture of Chemo Carl.

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casgarcia | @casgarcia | Feb 1 9:24am
In reply to @nanee1 "I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to..." + (show)
@nanee1

I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to happen to a young person. I can tell you what helped me. When I got the news that it was such a rare cancer confirmed by Mayo Clinic. I went to bed & cried. I then realized that that would not work. I would need to have a positive attitude & positive thoughts. I asked for prayers from those that were so inclined & positive thoughts from others. I designed a mean looking cartoon character I named Chemo Carl to fight the cancer. He is an English Bulldog wearing a pink cape & pink boxing gloves. I tell him to get in there & beat the crap out of the cancer cells. I am a religious person so I depend on Jesus to help me through this. My Oncologist & the infusion nurses are thrilled with my attitude. Guess what! My third scan showed tht the cancer had been contained & had not spread. I have my forth scan the 30th. I am looking forward to more good news! I hope this helps.

Jump to this post

Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle under his right arm. His tumor grew to 900 grams in 3 months, explosive growth, treated with surgery and radiation in October 2022. It has resurfaced in his right axilla and there is a suspicious lesion in his left lung. Started chemotherapy this week. He is 44 years old. I retired in Merida, Mexico. When he was diagnosed he didn't have health insurance so he flew to Merida where he got FAST skilled excellent medical care. Now he has BCBS Florida insurance and it looks like we'll be able to use it here to defray the cost of chemotherapy.

REPLY
2 replies
casgarcia | @casgarcia | Feb 1 9:15am
In reply to @nanee1 "I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to..." + (show)
@nanee1

I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to happen to a young person. I can tell you what helped me. When I got the news that it was such a rare cancer confirmed by Mayo Clinic. I went to bed & cried. I then realized that that would not work. I would need to have a positive attitude & positive thoughts. I asked for prayers from those that were so inclined & positive thoughts from others. I designed a mean looking cartoon character I named Chemo Carl to fight the cancer. He is an English Bulldog wearing a pink cape & pink boxing gloves. I tell him to get in there & beat the crap out of the cancer cells. I am a religious person so I depend on Jesus to help me through this. My Oncologist & the infusion nurses are thrilled with my attitude. Guess what! My third scan showed tht the cancer had been contained & had not spread. I have my forth scan the 30th. I am looking forward to more good news! I hope this helps.

Jump to this post

That's great news. Our oncologist tells us that the incidence of leiomyosarcoma is 1 to 3 per million but the good news is that this type of cancer is very susceptible to chemotherapy.

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casgarcia | @casgarcia | Feb 1 9:12am

My 44 year old son was diagnosed with leiomyosarcoma abd early onset Parkinsonism in October 2022. He had surgery and radiation but as of January 2024 a new tumor resurfaced in his right axilla. He just started chemotherapy this week. We are in Merida, Yucatan, Mexico. The medical care is excellent.

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sjd4901 | @sjd4901 | Jan 31 7:37pm

I’ve been diagnosed with Leiomyosarcoma of the prostate. Haven’t been able to connect with anyone else with the same diagnosis.

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nanee1 | @nanee1 | Jan 24 9:22am
In reply to @janezum "It sure does dear soul, and THANK U for taking time out to reply. GOOOO GOOOO..." + (show)
@janezum

It sure does dear soul, and THANK U for taking time out to reply. GOOOO GOOOO GOOOO Chemo CARLxxxxxxx

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I will send a picture of Chemo Carl. He will be happy to help your loved one. I will do it in the next few days.
How are things going there?

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