Primary Peritoneal Cancer, Low Grade stage 3c

[kaza64]

I was diagnosed with the above last march but apparently there are not many people in the UK with this.....there are people with this cancer but not the low grade.....I was just wondering if there is anyone else in the UK like me.....thanks Karen ??

[Hidden]

Hi ... I am one ... X

[kaza64]

Hi .....are u on any medication and have you had any chemotherapy?

[drdu]

No, I am high grade PPC. Low grade should have a better outlook, I would think.

All best wishes.

Eileen xx

[Hidden]

Hi Karen...

I am Stage 4 low grade PPC. I have microscopic growths throughout my abdomen with mets to my lung. I was given six rounds of carboplatin and had a partial response. I am told that a partial response is a good response because low grade is resistant to platinum. There has been further growth since my treatment but it seems to be slow at the moment. It is a relatively rare disease so I don't know how many people have it. According to recent research, there my be a link between some forms of it and the fertility drug clomiphene (otherwise known as Clomid( if this drug is taken for more than 12 months. I was on it in the 80s followed by Tamoxifen and Perganol. At the time of diagnosis 2 years ago, my doctor asked if I had had childhood TB because of the condition of my abdomen and the fact that my fallopian tubes were distorted by the time I was in my teens. It would be nice to know the cause. I'm not BRAC 1/2 positive and although I'm from a very large family, I'm the only one with the disease.

[Lazydaisie]

Hi ya, I too have low malignant primary peritoneal cancer stage 111c. I was diagnosed November 2012 and had major debulking surgery. My surgeon says chemo isn't an option and has me under 4 monthly obs. My ca125 wasn't ridiculously high when I was at my worst.. It came down to 8, but is creeping back up..

It's so hard to find anything out about this type of cancer, not sure what symptoms I should be looking out for. I feel like I'm going crazy sometimes, nobody has any answers, even my oncologist struggles..

[Noodle1]

Hi Lazydaisie. I also was diagnosed with Primary Peritoneal Cancer after first being diagnosed with Ovarian cancer. I know what you mean about trying to find information. It seems everything just bounces you back to Ovarian cancer! I had debaulking surgery on 8th August and a ninth chemo three weeks later. Mu CA125 was also reduced to , but just two months later is over 200! I have been trying to find out what happens next, but have to wait until after a CT scan on 10th Dec. Frustrating and worrying, and I don't do waiting too well. Just want you to know that you are not alone. I know exactly how you feel. Would you mind if I prayed for you (every little helps), and please know that I am thinking about you.

Noodle1

[Galah]

Hello everyone. I have just been diagnosed with Stage 3 Primary Peritoneal Cancer. I'm still learning about it. I'm BRCA1 positive. I live in a town about 3 hours west of Sydney, Australia. I had preventative surgeries (breasts off, ovaries out) in 2011 and 2012, but that hasn't helped in my case! I'm about to have 3 cycles of chemotherapy, then surgery, then three more cycles of chemotherapy. I'm in the ICON8 clinical trial, if that means anything to anyone. A scan of my abdomen has shown two tumours, one 11cm next to my stomach, and another 5cm down in my pelvis, pushing against my rectum. I've signed up here hoping to learn a little more about PPC and to compare notes.

[Zena41]

Meeee

[SuzanneKau]

To anyone who has been diagnosed with low grade ovarian or primary peritoneal cancer (both rare) research the work of Dr. Gershenson at MD Anderson in Houston, TX. In the past it was very difficult to find much on low grade but an 8 year study on woman with low grade (chemo resistant) OC and PPC has revealed that they often benefit by taking hormone blockers — similar to treatment used on certain breast cancer patients.

[newfoundland]

Hello, just found this site I was diagnosed in September with inoperable low grade peritoneal cancer stage 3c too. Just completed four sessions of chemo and fingers crossed it has stopped the spread.