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

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Profile picture for ddbumb @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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Profile picture for mickay @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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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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Profile picture for gemmalt @gemmalt

Can I ask where you have the UPS tumours..Dad has it in lungs with unknown primary, thanks

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Primary in shoulder which was successfully removed in January 2023. Now metastasis in lungs. Hope you Dad is ok

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Profile picture for mickay @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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Can I ask where you have the UPS tumours..Dad has it in lungs with unknown primary, thanks

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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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Profile picture for mickay @mickay

My husband has undifferentiated pleomorphic sarcoma metastisis in lungs. He has had 6 cycles of doxorubicin 6 weeks off treatment and has a petscan tomorrow. Has anyone had different treatment

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@mickay, I'm tagging fellow sarcoma members like @superconcernedwife and @vivianfromaz, who have experience with doxorubicin.

Did you and your husband get the results of the PET scan and talk with his oncologist yet? How are you doing?

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My husband has undifferentiated pleomorphic sarcoma metastisis in lungs. He has had 6 cycles of doxorubicin 6 weeks off treatment and has a petscan tomorrow. Has anyone had different treatment

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Profile picture for gemmalt @gemmalt

Hi
Dad is on his 10th round of Trabectadin very little effects - CT scan after 3 months showed shrinkage, just had another scan now and waiting for results on 10th Nov. Some patients have been on 30-40 treatments and still going (every 3 week schedule). They said it would continue until progression/toxicity. Dad has only had one delayed as neutrophils low. They did joke was he actually on chemo last time we went as he presents fit and well. We were told it’s not curative but will hold it back. We are UK based but I’m taking him to Tampa end of this month to meet his grandchildren he’s never seen so fingers crossed all goes well. Good Luck to you xx

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Genmalt:

I do appreciate your communication and wish him the best.
From lung metastases,
how many did they find, and the sizes of the tumors?

According to the oncologist at Fred & Hutchinson, they really do not have data on which chemo or any chemo will be effective against UPS.

One suggestion for treatment proposed was proton therapy.
I will be having a result of a chest scan next week.

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Profile picture for dbla @dbla

Hello Gemmalt:

I had six weeks of radiation after the surgery. I will be doing a CT scan next week to find out lung metastases. I will know more about the next treatment after CT.
I am wondering if Trabectadin was effective for UPS. Traditional chemo may not be effective against UPS.

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Hi
Dad is on his 10th round of Trabectadin very little effects - CT scan after 3 months showed shrinkage, just had another scan now and waiting for results on 10th Nov. Some patients have been on 30-40 treatments and still going (every 3 week schedule). They said it would continue until progression/toxicity. Dad has only had one delayed as neutrophils low. They did joke was he actually on chemo last time we went as he presents fit and well. We were told it’s not curative but will hold it back. We are UK based but I’m taking him to Tampa end of this month to meet his grandchildren he’s never seen so fingers crossed all goes well. Good Luck to you xx

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