Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?
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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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.
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.
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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1 ReactionSorry 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!
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 🤞🙏
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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1 ReactionIt 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.
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?
I am starting Doxorubicin & Keytruda-Pembrolizumab. So far the cancer is not very aggressive. Have several areas of the right lung that have been detected but no large mass. I hope you are doing well & wish you the best. Please keep me informed of your progress!
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1 ReactionThank you!!