Primary Peritoneal Cancer

[Jules_PPC]

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.

[GwenHP]

I’m glad you found this group! While I’m not ppc basically most women I’ve know with ppc are treated the same as us ovarian cancer patients. We also embrace folks with Fallopian tube cancer like my mom had.

[Jules_PPC in reply to GwenHP]

Thank you so much! It’s great to talk to others that are going through the same thing.

[Mamaw1]

Congrats on your numbers. I have overian cancer and seem to be responding extremely well except for the white cells. They like to play games. I had the first surgery but have refused the second. Letting body heal. I am starting my 4th round of Carbo/paxitaxol, no sickness. Engery level is so so

Best of luck

[Jules_PPC in reply to Mamaw1]

I had trouble with my counts too. They had to reduce my Carbo/ptax and go to every 4 weeks instead of every three. Plus giving me Neulasta shot 48 hours after treatment. I think the shot made me feel worse than the chemo!

I was thankful to have the second surgery after I was done with the 6 treatments, otherwise I wouldn’t have known for sure. Gave me a little piece of mind.

I only got sick one time, after my first treatment. They have some great meds for people now for that, and they worked great! One of my biggest problems was being so cold all of the time.

Hang in there, I wish you all the best with your treatment.

[Mamaw1]

Thanks. I am always cold too. Lots of blankets lol

[journal]

How are you doing on the letrozole? I am hgsoc with high estrogen of 8/8. Be sure to take a CA supplement!

I am wondering if I should take leyrozole with olaparib as I'm brca +. Will ask doc. We must fight this disease on many fronts!

[Jules_PPC]

They did the genetic testing on me and I am negative for the Brac 1 & 2 and said that’s why he wanted to use Letrozole on me, that it had some great results in women with Breast C, that were also negative for Brac gene. So I’m not sure about taking it if you’re positive.

I’m doing good I think, I finished my 9th Chemo treatment the end of September, and my CA 125 has only gone up to 12.2 from 10.1.

So I’m hoping for the best outcome 😊

Jules