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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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dbla | @dbla | Oct 31, 2023
In reply to @gemmalt "Hi My dad has undifferentiated pleomorphic sarcoma of unknown primary - they found lung metastases and..." + (show)
Profile picture for gemmalt @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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dbla | @dbla | Oct 1, 2023
In reply to @speedreader "I just had the appointment with the Oncologist at Penn State Hershey Cancer Center. She is..." + (show)
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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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I wish you well.
Please keep us informed of the progress.

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dbla | @dbla | Sep 25, 2023
In reply to @speedreader "I just had the appointment with the Oncologist at Penn State Hershey Cancer Center. She is..." + (show)
Profile picture for speedreader @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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speedreader | @speedreader | Sep 25, 2023
In reply to @colleenyoung "@speedreader, if Mayo Clinic is an option for you, here's how to get started on getting..." + (show)
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@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.

REPLY
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dbla | @dbla | Sep 25, 2023
In reply to @gemmalt "Hi My dad has undifferentiated pleomorphic sarcoma of unknown primary - they found lung metastases and..." + (show)
Profile picture for gemmalt @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 🤞

Jump to this post

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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Colleen Young, Connect Director | @colleenyoung | Sep 25, 2023
In reply to @speedreader "I am glad you are getting a second opinion. I had my tumor removed in 2/2023..." + (show)
Profile picture for speedreader @speedreader

I am glad you are getting a second opinion. I had my tumor removed in 2/2023 after 5 weeks of radiation. I was told I did not need chemo because my chest scan was clear. In August I found lumps in my groin. It went to my lymph nodes. The oncologist says UPS is not supposed to go to lymph nodes. Now I am going through biopsy and tests to determine course of treatment. This time they say it will include chemo, radiation and surgery. I am definitely going for a second opinion this time to a sarcoma cancer center.

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@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?

REPLY
1 reply
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dbla | @dbla | Sep 18, 2023

Mayo Clinic may be a good place to receive a second opinion. I am getting my second opinion from Fred & Hutch in Seattle. I think we should get at least a second opinion and a third opinion is preferred.
It comes down to who has more data.

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speedreader | @speedreader | Sep 15, 2023
In reply to @dbla "I was diagnosed with UPS (Undifferentiated Pleomorphic Sarcoma) in May 2023. I had surgery to remove..." + (show)
Profile picture for dbla @dbla

I was diagnosed with UPS (Undifferentiated Pleomorphic Sarcoma) in May 2023. I had surgery to remove a tumor in July 2023. Currently, I am receiving a radiation procedure ending in October.

I do not have a treatment schedule after radiation though Chemo was recommended by the primary oncology doctor.
I am getting a second opinion from another oncologist to decide what my plan will be.

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I am glad you are getting a second opinion. I had my tumor removed in 2/2023 after 5 weeks of radiation. I was told I did not need chemo because my chest scan was clear. In August I found lumps in my groin. It went to my lymph nodes. The oncologist says UPS is not supposed to go to lymph nodes. Now I am going through biopsy and tests to determine course of treatment. This time they say it will include chemo, radiation and surgery. I am definitely going for a second opinion this time to a sarcoma cancer center.

REPLY
1 reply
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dbla | @dbla | Sep 15, 2023
In reply to @gemmalt "Can I ask where the primary was as Dad has UPS of unknown primary but with..." + (show)
Profile picture for gemmalt @gemmalt

Can I ask where the primary was as Dad has UPS of unknown primary but with lung metastases..I just find it odd as they can’t identify the primary (he’s had abdominal CT).

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Mine was at the upper left thigh. It grew to 8 centimeters but it did not spread to lung according to the CT.

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gemmalt | @gemmalt | Sep 15, 2023
In reply to @dbla "I was diagnosed with UPS (Undifferentiated Pleomorphic Sarcoma) in May 2023. I had surgery to remove..." + (show)
Profile picture for dbla @dbla

I was diagnosed with UPS (Undifferentiated Pleomorphic Sarcoma) in May 2023. I had surgery to remove a tumor in July 2023. Currently, I am receiving a radiation procedure ending in October.

I do not have a treatment schedule after radiation though Chemo was recommended by the primary oncology doctor.
I am getting a second opinion from another oncologist to decide what my plan will be.

Jump to this post

Can I ask where the primary was as Dad has UPS of unknown primary but with lung metastases..I just find it odd as they can’t identify the primary (he’s had abdominal CT).

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