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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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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@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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@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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@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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@gemmalt

Hi
My dad has undifferentiated pleomorphic sarcoma of unknown primary - they found lung metastases and he is having 3-weekly Trabectadin which is doing the job so far so good 🤞

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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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@speedreader

I just had the appointment with the Oncologist at Penn State Hershey Cancer Center. She is recommending three rounds of AIM chemo, then surgery to remove the lymph nodes in groin and three more rounds of AIM chemo. I am going to Memorial Sloan Kettering for a consult on Thursday.

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I wish you well.
Please keep us informed of the progress.

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@speedreader

I just had the appointment with the Oncologist at Penn State Hershey Cancer Center. She is recommending three rounds of AIM chemo, then surgery to remove the lymph nodes in groin and three more rounds of AIM chemo. I am going to Memorial Sloan Kettering for a consult on Thursday.

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I wish you the best. Please keep us informed of your progress.

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@colleenyoung

@speedreader, if Mayo Clinic is an option for you, here's how to get started on getting a second opinion http://mayocl.in/1mtmR63

Have you had a consult with your oncologist yet with the results from the Tumor Board discussion? What's the treatment plan for you?

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I just had the appointment with the Oncologist at Penn State Hershey Cancer Center. She is recommending three rounds of AIM chemo, then surgery to remove the lymph nodes in groin and three more rounds of AIM chemo. I am going to Memorial Sloan Kettering for a consult on Thursday.

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@gemmalt

Hi
My dad has undifferentiated pleomorphic sarcoma of unknown primary - they found lung metastases and he is having 3-weekly Trabectadin which is doing the job so far so good 🤞

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Hi:

Have you considered having a proton treatment to rid of cancer cells in the lung?
I had a discussion with Fred & Hutch in Seattle to do proton treatment instead of Chemo if we find lung metastases. You may want to speak with them.

How is Trabectadin going so far? Did it shrink the size of the tumor? If so, how much?

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