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Seizure Disorder and Stage IV Primary Peritoneal Cancer...

anner1017's picture
Posts: 3
Joined: Oct 2012

First post, and loaded. My mom, Becky, amazing, vivacious, loves life and retirement... struck down just over a year ago with "unspecified" abdominal cancer. Six rounds of chemo after debulking found her in remission. Two and a half months ago her CA-125 went from 9.6 to over 1600 in less than 3 months and CAT scan found questionable "fluff" in her abdomen.
Now stage IV primary peritoneal cancer. On top of all this, mom has a "seizure disorder" (for the past 46 years... happy birthday from me).. Stress seems to bring them on, so you can imagine what the woman has been through. CA-125 this week was up to over 1900... what is a high number, what does it mean?! She is in CT, I'm in VT and can only get there for every other chemo treatment/appointment with oncologist.
I apologize for not reading everything on this page first... from what I have read this place is full of compassionate people who may be able to offer a place to start my search.
Thank you for reading this.
Ann E

Posts: 100
Joined: Jun 2012

I was really sorry to hear about your Mom's present situation. I can see from what you've said how much she must have been through over the years. It's hard to research Psrimary Peritoneal Cancer because there isn't much out there that's relevant and most of it is gloomy news. The thing I wish I'd not done at diagnosis is look on the net for information. There are many different types of Primary Peritoneal in that not everyone has the same cell disfunction (for want of a better word) and not all of the cells behave in the same way. Some are a little lazy but don't respond well to platinum therapy for example and some are high grade and active but usually respond to treatment much better. Some lazy cells become more aggressive at times. What I know is that I didn't have much hope at first but now I see it as a chronic condition that I'd very much like not to have. The people here have helped me immensely.. more than I can ever say. Good healing feelings are sent to you and your Mom.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I agree with Patsie about the different responses to chemo as we all have different types of cancer cells. Mine are cells that look like grains of sand and are wrapped around my internal organs. So I couldn't have surgery as there wasn't a tumour to remove. The highest my numbers went to was 2,000 and that was earlier this year. I had 2 platinum chemos and my numbers are currently 225 - so that clearly works for me.

Keep us informed about her progress, love Tina xxxxx

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