Hi, I’m new here. Diagnosed November 18, 2016 with Primary Peritoneal Cancer, staged at 3C. This was found during exploratory surgery.
I’d had a completely normal ultrasound and then a completely normal CT scan.
But my CA125 was 5800+. I knew something was wrong before any of my tests. So trust yourself to know your body.
This news was obviously devastating to myself as well as my family.
So I started chemo December 2016, my hair started coming out two days before Christmas, I was fortunate that I could use the cold cap system and it saved most of my hair. And for me that was a big deal. My husband cold capped me for 8 hours on my treatment days. Changing the cap every 20 minutes.
I had the usual protocol of 6 treatments of Carbo/paxitaxol, my CA125 was back to normal range after the third ( 27 ) I had de bulking surgery 6 weeks after my 6th treatment in June of 2017, my Dr took some washings and found that I still had microscopic cancer cells. He suggested 2 more Chemo treatments to clean those up, I told him I wanted to do three more, even though I had to have a neulasta shot and hydration after my chemo treatments, my body withstood the treatments pretty well.
I had my 9th and last treatment on September 13, 2017. I pray every day that it doesn’t come back.
I just went for my first 3 month check and my CA125 was 12.6!
I had genetic testing that showed my cancer to be 80% estrogen fed!
I had been taking estrodiol since Oct 2014. Needless to say I threw that crap away that day. I’ll deal with the hot flashes and night sweats.
I’ve been on Letrozole since September of 2017. As well as multiple supplements.
I hope to find people on here with similar stories, I’ve yet to find a forum specifically for PPC, but I’d like to.
Hopefully y’all don’t mind my posting my story here.