Undifferentiated Pleomorphic Sarcoma

Posted by me67 @me67, Mar 3, 2017

I have been diagnosed with pleomorphic sarcoma. Is there anyone on this site that has had this cancer or has it now? I would like to talk to you. Thank you

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@mickay

Went to Oncologist today. The larger tumours have grown only by a few millimetres and overall Doxorubicin has slowed the cancer down. He is now starting on a target therapy tablet called Pazopanib so fingers crossed

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Hi Mickay @mickay How is your husband doing being on Pazopanib? Any side effects? I have synovial spindle cell sarcoma located in my left lung. I've had surgeries, chemo and radiation which seemed to work for a little while but its back now. One of the possible treatments mentioned is Pazopanib. What has your experience been with it?

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@ddbumb

Hi, I was just diagnosed with UPS December 4, 2023. It is located in several places of the right lung & have had fluid drained from lung several times already. Am getting ready for chemo. Is there anyone out there in similar situation that would like to talk?

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Hi ddbumb @ddbumb Sorry to hear about your diagnosis. I was diagnosed with synovial spindle cell sarcoma in my left lung in January this year. It's been a rollercoaster this year. After 2 surgeries, chemo and radiation, it seemed to be gone but I just found out its back. I don't know what to think. My doctors are figuring out what treatment is next. What chemo drugs are you getting now? Is your cancer aggressive?

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@ddbumb

Hi, I was just diagnosed with UPS December 4, 2023. It is located in several places of the right lung & have had fluid drained from lung several times already. Am getting ready for chemo. Is there anyone out there in similar situation that would like to talk?

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Thank you!!

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@scs23

Hi ddbumb @ddbumb Sorry to hear about your diagnosis. I was diagnosed with synovial spindle cell sarcoma in my left lung in January this year. It's been a rollercoaster this year. After 2 surgeries, chemo and radiation, it seemed to be gone but I just found out its back. I don't know what to think. My doctors are figuring out what treatment is next. What chemo drugs are you getting now? Is your cancer aggressive?

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I am starting Doxorubicin & Keytruda-Pembrolizumab. So far the cancer is not very aggressive. Have several areas of the right lung that have been detected but no large mass. I hope you are doing well & wish you the best. Please keep me informed of your progress!

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@ddbumb

I am starting Doxorubicin & Keytruda-Pembrolizumab. So far the cancer is not very aggressive. Have several areas of the right lung that have been detected but no large mass. I hope you are doing well & wish you the best. Please keep me informed of your progress!

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Thanks for the well wishes, same to you. Good to hear that it's not very aggressive. If you don't mind me asking, how did you first find out about your cancer?

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@scs23

Thanks for the well wishes, same to you. Good to hear that it's not very aggressive. If you don't mind me asking, how did you first find out about your cancer?

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It was really by accident. I was having left breast tenderness & pain under left arm pit. X-ray & CT scan found fluid in right lung & asbestos partials in plural section of right lung. Initial diagnosis was mesothelioma. Went to UC Health in Colorado & after many tests was finally diagnosed with UPS.

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@scs23

Hi ddbumb @ddbumb Sorry to hear about your diagnosis. I was diagnosed with synovial spindle cell sarcoma in my left lung in January this year. It's been a rollercoaster this year. After 2 surgeries, chemo and radiation, it seemed to be gone but I just found out its back. I don't know what to think. My doctors are figuring out what treatment is next. What chemo drugs are you getting now? Is your cancer aggressive?

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I’m sorry to hear that you have gone through so much & cancer has returned. We are battling with insurance company at the moment. The original plan was for Doxorubicin & Keytruda. Insurance has denied Keytruda saying it is experimental and not allowed with BCBS. Doctors are trying to fight the denial so unfortunately treatment is on hold.

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Hello, hope you are doing ok. My husband had an UPS in his pectoral muscle which was removed in January 2023. All removed, clear margins but on 31st May 2023 CT Cat scan showed it had mastisised to his lungs. Has had 6 cycles Doxorubicin then 6 weeks off. Petscan showed it slowed it down a bit but bigger sarcomas grew by about 6mls. Has been on Pazopanib for a month with no side affects. Has another scan in a month's time to check if it is working so 🤞🙏

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Sorry to hear of your diagnosis. If it is not to personal, may I ask the location of your sarcoma? I was diagnosed with UPS in December of this year located in the plura space of left lung(rare begins location). Have you been given a treatment plan. Will start Doxorubicin next week & awaiting Keytruda approval & treatment. Wishing you the best in this unfortunate journey!

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@scs23

Hi Mickay @mickay How is your husband doing being on Pazopanib? Any side effects? I have synovial spindle cell sarcoma located in my left lung. I've had surgeries, chemo and radiation which seemed to work for a little while but its back now. One of the possible treatments mentioned is Pazopanib. What has your experience been with it?

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Has been on Pazopanib now for about 5 weeks. Has a scan in about 3-4 weeks to see if it is working. Takes anti-nausea tablet with 800mg Pazopanib about an hour before breakfast and no side affects except for a bit tummy rumbling. Hope everyone had a lovely Christmas and best wishes for a better and happy New Year. Mickay

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