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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mickay | @mickay | Feb 13 9:29pm

In reply to @ddbumb "Thank you!!" + (show)

Hi ddbumb wondering how you are going & what treatment you are having. My husband has UPS, has had doxorubicin which slowed it down a bit. Has been on Pazopanib for 3mths (didn't work, some doubled in size) today gemcitabine & docetaxel. Oncologist says no to Trabecadin as it is not proven! Would like to hear from others who have taken Trabecadin. Mickay

gemmalt | @gemmalt | Feb 14 5:11am

In reply to @mickay "Hi ddbumb wondering how you are going & what treatment you are having. My husband has..." + (show)

Hi Mickay
Dad has UPS (unknown primary but bilateral lung mets), been on Trabectadin as first line for 12 months hardly any side effects, has pump through PICC line for 24hrs every 3 weeks - mets being held back/shrinkage so treatment continues. This is in Velindre Cardiff, South Wales, UK

mickay | @mickay | Feb 15 12:47am

In reply to @gemmalt "Hi Mickay Dad has UPS (unknown primary but bilateral lung mets), been on Trabectadin as first..." + (show)

Thankyou very much gemmalt for responding. I will again put this to my husband's Oncologist. Please keep me updated if possible. Good luck with all treatment.
Mickay

Colleen Young, Connect Director | @colleenyoung | Mar 9 2:40pm

@scrowe200, I'm thinking of you as you recovery from surgery for undifferentiated pleomorphic
sarcoma. I hope you are doing well and look forward to hearing from you when you're ready to post an update.

scrowe200 | @scrowe200 | Mar 10 6:52pm

In reply to @colleenyoung "@scrowe200, I'm thinking of you as you recovery from surgery for undifferentiated pleomorphic sarcoma. I hope..." + (show)

The surgery went well, so far no problems. It's been 5 days. No pain, just very sore when I move my arm .
I'm very active and the only concern is remembering that I am dragging a lunch box like catch all with tube from my wound. Tomorrow the wound VAC is changed and a new one in place. I was cautioned that if I hear an alarm, the air barrier on the wound has a breach and I will need to reattach a new VAC! Wow!! I can't imagine doing this! Has this happened to anyone else and how did they manage this in a short period of time??