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 | Jul 29 1:40pm
In reply to @sdsu "Yes, my husband. Stage 4 low grade fibromyxoid sarcoma is in his lungs. He is now..." + (show)
@sdsu

Yes, my husband. Stage 4 low grade fibromyxoid sarcoma is in his lungs.
He is now undergoing regular CT scans every 3 months to determine progression of disease and next steps.

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@sdsu, there are several members who have fibromyxoid sarcoma. Perhaps you'd like to start a new discussion in the Sarcoma support group dedicated to fibromyxoid. I'll be sure to bring the others into the discussion.

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ronnie79 | @ronnie79 | Jul 24 10:05am

Solitary Fibrous tumor sarcoma on my head. Diagnosed 11/2018

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1 reply
sdsu | @sdsu | Jul 22 2:57pm
In reply to @alias47 "Anyone been diagnosed with "Low Grade Fibromyxoid Sarcoma"?" + (show)
@alias47

Anyone been diagnosed with "Low Grade Fibromyxoid Sarcoma"?

Jump to this post

Yes, my husband. Stage 4 low grade fibromyxoid sarcoma is in his lungs.
He is now undergoing regular CT scans every 3 months to determine progression of disease and next steps.

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1 reply
muenchen1945 | @muenchen1945 | Jul 9 11:00am
In reply to @colleenyoung "@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology? Cardio-oncology offers expertise..." + (show)
@colleenyoung

@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology?

Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

Do you have both cancer specialist and cariologists involved in your care? How are you doing on immunotherapy?

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The infusion alone worked well - I had energy, stamina and felt st times almost normal. As soon as I had to add the oral meds I started feeling sick, no energy, dizzy, balance issues, lost a lot of weight in one week - informed my team and will take myself off the oral meds.

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laurenmca3 | @laurenmca3 | Jul 8 8:38pm
In reply to @colleenyoung "@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology? Cardio-oncology offers expertise..." + (show)
@colleenyoung

@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology?

Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

Do you have both cancer specialist and cariologists involved in your care? How are you doing on immunotherapy?

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Yes, I have a team including an oncologist, cardiologist, specialist in cardiology, palatine care, gastroenterologist, and now a kidney specialist since my kidneys are not in great shape due to heart meds. I receive immunotherapy (Keytruda) via port every six weeks

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laurenmca3 | @laurenmca3 | Jul 8 8:34pm
In reply to @colleenyoung "@mcwjr189, do you know the name of the targeted therapy that you're on?" + (show)
@colleenyoung

@mcwjr189, do you know the name of the targeted therapy that you're on?

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Keytruda… every six weeks

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 8 8:09pm
In reply to @laurenmca3 "Hello, I was diagnosed with an undifferentiated pleomorphic sarcoma of the heart. I had surgery to..." + (show)
@laurenmca3

Hello,

I was diagnosed with an undifferentiated pleomorphic sarcoma of the heart. I had surgery to remove tumor followed by chemotherapy, however could not finish due to heart complications. I am still on immunotherapy, and am over 2 years post surgery… not sure what comes next…

Jump to this post

@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology?

Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

Do you have both cancer specialist and cariologists involved in your care? How are you doing on immunotherapy?

REPLY
2 replies
mcwjr189 | @mcwjr189 | Jul 3 12:12pm
In reply to @colleenyoung "@mcwjr189, do you know the name of the targeted therapy that you're on?" + (show)
@colleenyoung

@mcwjr189, do you know the name of the targeted therapy that you're on?

Jump to this post

I haven’t started yet, waiting till my next scan on 9/24. The oncologist wants me to take Avastin and Temodar 150gm/m2

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 3 11:42am
In reply to @mcwjr189 "Hi, I was diagnosed with hyper cellular carcinoma in my liver in Sept of 2021. After..." + (show)
@mcwjr189

Hi, I was diagnosed with hyper cellular carcinoma in my liver in Sept of 2021. After checking for spread we found nothing else. In Oct the tumor was removed and it was quite large, 3-4 lbs. A biopsy was done following removal and it was determined to be a solitary fibrous tumor. Sarcoma. No further treatment was recommended. After quarterly cat scans it was found in my lower right lung and removed robotically in Oct of 2023. No further treatment but last scan in June showed 4 metastasized nodules in my left upper lung. New treatment is targeted chemo. I know this is rare but wondered if anyone had good results with this method. Thanks, MCWJR189

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@mcwjr189, do you know the name of the targeted therapy that you're on?

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2 replies
laurenmca3 | @laurenmca3 | Jul 1 5:45pm

Hello,

I was diagnosed with an undifferentiated pleomorphic sarcoma of the heart. I had surgery to remove tumor followed by chemotherapy, however could not finish due to heart complications. I am still on immunotherapy, and am over 2 years post surgery… not sure what comes next…

REPLY
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