Pecoma (type of Sarcoma) very rare

Hi Charmanddean welcome to the forum and sorry to hear about how isolated that you are feeling.

I dont know a lot about you type of Cancer either but I wondered if you might like to have  a chat with the lovely team at Macmillan as they may have resources that they could send you or direct you to. They may also be able to let you know what services may be available for you to access within your local area if that is of any use as well. 08088080000.

Sorry not to have been of more help for you and hope that you manage to get some answers or information for yourself. 

Many thanks Granny59

Thanks for the reply, I have been in touch with the help line and it was there suggestion to join a community. So here I am! I have been in contact with a group locally by mobile but they have not come back to me yet.

Many thanks again

Charmandean

Hi Charmanddean, I hope you are well and you get this message as I know you posted a few months ago. I have PEComa as well and understand how isolating it is to have a very rare cancer that no one knows about and there’s little information about it.

I was diagnosed with retroperitoneal PEComa last November after a misdiagnosis for what they thought was a large 15cm ovarian cyst at surgery pre-diagnosis. I still have a remaining tumour either from local reoccurrence or it was missed out from surgery as I only had an ultrasound at the beginning. I’m on a same group of drugs as you called Sirolimus - they both do the same thing from what I know, just a different name. I was on tablets for the first month and half before transitioning to an intravenous version this January. My scans have been good so far and I pray it continues to remain this way.

I’m new to the forum, so I don’t know how it works with messaging people. But if you ever want to chat, let me know. Happy to share what I know.