Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

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

Interested in more discussions like this? Go to the Sarcoma Support Group.

Profile picture for scs23 @scs23

Unfortunately I spent my holidays in the the hospital for pain control. I went in on Christmas day finally came home yesterday. There's 2 tumors in the fluid of my left lung, between the lung and plura. As of a couple weeks ago, one was 9x5cm and the other, 3x3cm, and they're growing. They're pushing on my insides, and it feels like something is trying to burst out of my body. And another tumor started growing a few weeks ago in the soft tissue on my left side. Its about 3x3cm now also. I started a new round of chemo on Jan 2nd, I hope it works fast. I'll have a scan after the 2nd round. Keep me posted, I wish you the best.

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@scs23, just wanted to check in. How are you doing on chemo?

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Profile picture for scs23 @scs23

Unfortunately I spent my holidays in the the hospital for pain control. I went in on Christmas day finally came home yesterday. There's 2 tumors in the fluid of my left lung, between the lung and plura. As of a couple weeks ago, one was 9x5cm and the other, 3x3cm, and they're growing. They're pushing on my insides, and it feels like something is trying to burst out of my body. And another tumor started growing a few weeks ago in the soft tissue on my left side. Its about 3x3cm now also. I started a new round of chemo on Jan 2nd, I hope it works fast. I'll have a scan after the 2nd round. Keep me posted, I wish you the best.

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I’m sorry to hear you spent the holidays in pain & in the hospital. You have been in my thoughts & prayers. I finally had my 1st round of chemo. Hearing what you and others have been going through has given me a whole new perspective on this dreaded disease. Hope you are feeling better & continue to do so.

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Profile picture for ddbumb @ddbumb

Hi Scs23, hope the holidays were kind to you! In response to your question yes the UPS is aggressive. Comparing CT scans from November 2023 to January 5 2024 it has almost doubled in size. Had my 1st round of chemo on the 5th so probably won’t know much until after 2nd or 3rd round.

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Unfortunately I spent my holidays in the the hospital for pain control. I went in on Christmas day finally came home yesterday. There's 2 tumors in the fluid of my left lung, between the lung and plura. As of a couple weeks ago, one was 9x5cm and the other, 3x3cm, and they're growing. They're pushing on my insides, and it feels like something is trying to burst out of my body. And another tumor started growing a few weeks ago in the soft tissue on my left side. Its about 3x3cm now also. I started a new round of chemo on Jan 2nd, I hope it works fast. I'll have a scan after the 2nd round. Keep me posted, I wish you the best.

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Profile picture for scs23 @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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Hi Scs23, hope the holidays were kind to you! In response to your question yes the UPS is aggressive. Comparing CT scans from November 2023 to January 5 2024 it has almost doubled in size. Had my 1st round of chemo on the 5th so probably won’t know much until after 2nd or 3rd round.

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Profile picture for ddbumb @ddbumb

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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Primary UPS was in pectoral muscle which was removed in January 2023 with clear margins. Had to remove whole pectoral muscle and replace with another muscle from his back. Now in both lungs.

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Profile picture for scs23 @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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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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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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Profile picture for scs23 @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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Profile picture for scs23 @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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