I had leiomyosarcoma in a fibroid stage 1b removed in a total open hysterectomy in July 21. It returned in my pelvis on my iliac artery and psaos muscle. I had doxorubicin in April this year but unfortunately both mets doubled in size. I then had Gem/Tax which made me really ill and has left me with neuropathy in my hands and feet. My consultant then told me to stop treatment and just enjoy the time I have left. He said the prognosis from the mets appearing is 12-18 months and then pointed out that I had already had 8months! I said no I will continue with treatment for as long as I am able. I am now on Dacarbazine but it has caused my neutrophils to go too low and have had the last 3 treatments cancelled due to this. I am under the Lee Hameed sarcoma team at the Christie in Manchester.
I can’t understand why the Marsden haven’t offered other chemotherapy treatments. They won’t allow you to be a liver donor as she has cancer. I was told that if there is more than one met surgery will not be an option. I hope you get some answers soon.
They said to me that doxorubicin was the strongest - and other chemo treatments would have less of a chance. My mum went into hospital at the end of November because her white blood cell count got so low - she herself said she couldn't consider anymore chemo treatments - well specifically doxorubicin/Red Devil - and I guess the doctor agreed with her -- but I was surprised they didn't consider alternative treatments - aside from chemo, like targeted therapies.
Currently she is now back at home, in Kent - and I've tried to start the process to get her medical records obtained and for her to get a 2nd opinion at least under Martha's Law to try and avoid having to wait a month just for the records to be prepared.
The Gem/Tax didn’t reduce the size but each met grew about a centimetre when my doctor said they would call that stability. It affected me so badly I had to be admitted and has caused lots of other problems. I can’t drive or walk without support because my feet are numb. He said it wasn’t possible to continue it. To be honest I don’t think I could have coped with it anymore. Doxorubicin caused the Mets to double in size but I had very few side affects. I hope you get some answers soon
