Leiomyosarcoma

I had a total open hysterectomy including tubes and ovaries in July 2021. It was in a fibroid and due to lymphovascular space invasion it was graded 1b. In November 2022 two mets set up home in my pelvis, one on my psaos muscle and the larger one on my iliac vein. I was deemed inoperable but I insisted on chemo. I started on doxorubicin but the mets doubled in size. I then had gem/tax which had huge repercussions on my body so I was taken off that. I then had Dacarbazine which after the first round caused some shrinkage but growth on the second round. I then started trabectadin which for two rounds caused shrinkage and stability. My neutrophils and bone marrow were always hit hard and I never had 100% of any chemo and had many chemo sessions cancelled. Because the trabectadin had shown promise I had a chemo break and 2 scans showed minimal growth. I was due for a CT scan in early December but last week started to feel quite bad pain in my ribs and abdomen so I went to see my gp who sent me to our local general hospital with query pancreatitis. I knew something was wrong because the pain was very similar to the pain I had when my initial sarcoma was found. I had a chest X-ray, CT scans of my abdomen and lungs and numerous blood tests. Yesterday I was told that both of my pelvic tumours had grown significantly, there was a tumour on my liver and a large mass where my uterus used to be. I have insisted that I see my consultant at the Christie hospital asap so that we can make a plan. My youngest daughter is expecting her first baby in April and I need to be here for her and my son is getting married in August next year and again I need to be here. I am heartbroken that I won’t see my grandchildren grow up but the biggest heartbreak is the grief that my husband and children will have to endure. I am strong and determined that I will be here for my daughter when she has the baby and I’ll see my son get married. My eldest daughter is a single mum and has two autistic sons and she needs me too. All my friends tell me that they’re in awe of my strength and determination and even the oncology nurse practitioner told me yesterday that she would wholeheartedly support me on future treatments. My husband is in total denial and just says I’ve fought it so far and doesn’t doubt that I’ll do it again. I will fight but 18 months of continuous chemo has had a detrimental effect on my bone marrow and body. I just want to live another 5 years.