Hello

Hi Freya_tilly 

Welcome to our community, I hope you find it both informative and supportive.

I am Steve, one of the community champions and my experience of cancer is via my wife who also has Leiomyosarcoma - hers was only discovered after it had spead so she has quite a few lung mets.

She was given doxyrubicin and it worked if anything rather too well in that some of the cancer it killed was part of the lung wall and so she had a collapsed lung and so that treatment was discontinued. They managed to fix up the lungs though and then they tried single agent gemcatabine and that managed to put her cancer to sleep and it has been like that for over 10 years now. Janice says the cancer is not bothering her and she is not bothering it.

One of the more interesting aspects I found was whenever Janice saw a new doctor how they would reach for the compuer to lookup Leiomyosarcoma.

<<hugs>>

Steve

That's an amazing story and very inspiring to me at the start of this journey. All the best to your wife.

Hi freya, my husband also had leiomyosarcoma, (retroperitoneal) which ultimately spread to lung, liver kidneys. He was not able to have doxorubicin, which I think is the chemo of choice so best of everuthing with the treatment and side effects, I hope it is able to keep this nasty cancer at bay for a long while for you. X