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bettyuatgv
Posts: 3
Joined: Jul 2012

Hi, I'm new to the network and would like to get to know others who have pritoneal cancer. There is so little information out there that I think talking to others with the same disease will help us all understand the good and the bad.

Carolyn68
Posts: 39
Joined: Aug 2011

I hae PPC. I was diagnosed in June 2010. I was put on a clinical trial COG 252. I had chemo every 7 days after havinga complete hysterectomy and debulking on June 7th, 2010. I thought I had a bladder infection, I saw 5 doctors in one month before they found it! I was demanding...because I didn't feel well! Anyway, I was done with carbo/taxol Nov 2010 and continued on with Avastin maintenance until Oct 2011. I was NED since my first chemo in 2010. I felt good and then was seen every 3 months. At my 3 month check up in April my number was 44 but with clear CT. So had a check up in June to follow up and my CA 125 had gone up to 371. At that time they did a colonoscopy, (not successful, Narrowing of colon) then a barium anema, which was all clear, CT which showed mass by my spleen. We had pretty much decided on surgery again. I asked to have a PET scan to make sure before more surgery and sure enough they found more floating masses by my colon and pelvic. No suregery, we went right into chemo taxol/carbo. My CA125 is higher than ever but only 10 days since my 1st chemo.(872) My doctor isn't concerned. She said without surgery it can take 2-3 chemos before it goes down, lets hope so. This is my third week, I generally feel pretty good. I get double the dose that I got last time...because I go every 21 days instead of 7. I have had bowel issues for months, had cdiff, now cleared. I was really hoping for more surgery....but couldn't removed the tumor and then wait 6 weeks for more chemo on the "floaties", just too risky. So went aggresive with chemo and hope it all works. My doctor always give me hope....she says it is a day to day disease....she calls it a chronic disease that can be managed. I am 62, had to quit my job....first I missed my job and now not at all. I am enjoying life and hoping that I get over this hump so I can do some more traveling.....I try not to have this "thing" ruin my life. I eat healthy, but I am not obcessed with everything. I am getting ready to lose my hair for the second time, that I don't like! But, when it goes, then I hope to know that the chemo is working! I don't know how much more you would like to know...but, lots of people on here with PPC. Don't read the internet so much because they give you no hope....when there is hope. Some of those articles were written years ago and so much has happen in just the two years that I have had PPC. If you need to ask more questions, please feel free to do so. They treat PPC pretty much like ovarian cancer. Good luck...and keep smiling.... Carolyn

bettyuatgv
Posts: 3
Joined: Jul 2012

Hi Carolyn,

Thank you for responding to my post. The information you gave me is very helpful. Its been 4 months since I stopped chemo and my CA 125 numbers have been creeping up ever since. They have taken me off maintenance with Avastin and I will be starting chemo again soon. Your words of encouragement are very helpful. Other than having this terrible disease, I feel great and I'm ready for the fight.

Betty

PatsieD
Posts: 100
Joined: Jun 2012

Hi Betty...
Good to see you here. It's not a good way to meet, but here we are and I hope you find messages useful and hopeful.
I was taken into hospital (after many hospital stays for supposed bowel blockages) in 2006. I had, in fact, a cystadenoma and 17lb later, it was removed. Long story. I asked at the time if I had cancer, and the answer was no. In 2009, I was taken in again. Long stay and an operation to remove my gallbladder. Horrid time. I actually wrote to the hospital to find out where the awarding institutions where for my doctors so I could check if they were qualified I was so convinced I had cancer. In 2009, I went to my local doctor who said I had irritable bowel syndrome but should go back. I was at the end of my tether. Then the culmination of feeling unwell four months' later resulted in my being diagnosed as having a slow growing form of the disease but I was at a late stage primary peritoneal and the situation didn't look hopeful. There was lots of anger at how I wasn't listened to. My own disease type doesn't respond well to chemo but I had it just the same. I did respond. Not fully, but partially and I'm glad I had it because before I had no hope. Now I think doctors know very little about my disease and they admit that. I have lots of hope and am determined to show that I can do well. I am doing that and there is lots of hope for people like me. I've found on this board that all is not lost. It's hard to get that message across isn't it.

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