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

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

@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.

Jump to this post

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

REPLY
@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

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.

REPLY
@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.

Jump to this post

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

REPLY
@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

Jump to this post

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.

REPLY

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

REPLY
@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

Jump to this post

@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?

REPLY

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

REPLY
@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

Jump to this post

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

REPLY
@gemmalt

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

Jump to this post

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

REPLY

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?

REPLY
Please sign in or register to post a reply.