Low Grade Ovarian Cancer, Stage 4B at 24 years old. Where are my low grade peeps at in treatment?
Hi ! I am new to reddit and this page! I am two and half years into my diagnosis and would love to chat about where other low graders are at in treatment and mindset regarding a palliative diagnosis.
I was diagnosed with stage 4B LGOC in 2023. I was 24 at the time. I found out in the ER after having gone in for bloating, frequent urinating, pelvic pain and constant swinging between constipation and diarrhea. Three weeks after I found out about my cancer, I was in surgery for a total hysterectomy, oophorectomy and partial colectomy. In surgery, they found my cancer had spread to my liver, diaphragm and spleen. After recovery, I did 6 round of carbo and paxi. The first three showed some improvements in tumor sizes, but the last three showed no movement. Then, I was on anastrazole with the hope of cutting even more estrogen from my body. 4 months later, scans showed growth. We switched to an oral medication called Trametinib/Mekanist. From my understanding, this pathway of treatment is the only one tested exclusively on low grade ovarian patients. 5 months later, the drug had kept me at neutral but my liver enzymes, UTI symptoms and the rash acne all over my face made us discontinue treatment. We switched back to traditional chemo. For the following 7 months, I took Caelyx/Doxorubucin in combination with bevacizumab. This duo helped me stay "dry" (no ascites) but the caelyx caused major MAJOR damage to the skin of the palms of my hands. I had to discontinue treatment. We then moved on to an hormone suppressant called Tamoxifen which is a sister drug to anastrazole. Same as with anastrazole, scans showed a big increase in disease and I had to go back to regular drains for a while. Most recently, I was on Topotecan and bevacizumab followed by beva alone for a handful of sessions.
I am situated in Alberta, Canada and it seems as though I have tried all standardized treatments generally used for ovarian cancer. There have been talks of Elahere/Mirvetuximab soravtansine being approved by Health Canada and slowly making its way into provinces. I've been deemed folate positive and a potential candidate for it. But.. it has only been tested in HGOC and the eye side effects scare me. Should I turn to a more LGOC route? Is it time to try more experimental treatments? Please share whatever you or a loved one has experienced.