Getting us all on the same page....

lillin20 said:

my grandma
When were you diagnosed? Nov 2005
What stage? IIIc

Are you the patient, or a caregiver: Granddaughter
OVCA, clear cell, or PPC? PPC

What was your highest CA125? 689
What was your lowest? 23
What is it now? we don't know, we're not testing anymore

What's your current status? my grandma has completed tax/carbo, carbo for the relapse, doxil for second relapse, and is now on hospice care

My Information
When were you diagnosed? August 26, 2005
What stage? 2C

Are you the patient, or a caregiver: Patient
OVCA, clear cell, or PPC? OVCA

What was your highest CA125? 50,500
What was your lowest? Not sure
What is it now? 22

What's your current status? Cancer Free, CA125 and CT Scan to confirm.

Great for newbies
When were you diagnosed? (January 2008)
What stage? (IIIc)

Are you the patient, or a caregiver: (patient)
OVCA, clear cell, or PPC? (OVCA)

What was your highest CA125? (1799)
What was your lowest? (6) I think, I'd have to look it up been awhile!
What is it now? (151)

What's your current status? I am in recurrence. Was on cisp/gem from July 2009-February 2010 (became allergic to cisp) changed to gem/carbo from March 2010-May 2010. Went to The James Cancer Center began PARP Clinical Trial (drew the Doxil and on a higher dose) on July 19 and continuing...................................

Living for Jesus and Counting my Blessings,
Libby


I am BRCA2 positive

KarynH said:

When were you diagnosed?
When were you diagnosed? August 2009
What stage? 4

Are you the patient, or a caregiver: daughter/caregiver
OVCA, clear cell, or PPC? OVCA

What was your highest CA125? 993
What was your lowest? 36
What is it now? 44

What's your current status? No surgery.(Sept.- March --Carbo/Taxol) (March - Oct.--Taxol/Carbo/Avastin)
Currently staying on Avastin alone along with daily cytoxan. Two small spots still remain on CT, but is a great improvement over a year ago.

My Mom
When were my mom was diagnosed? Dec 2009
What stage? 3c

Are you the patient, or a caregiver: daughter/caregiver
OVCA, undiffrenciated

What was her highest CA125? 1199
What was your lowest? 13
What is it now? 13

What's your current status?
She had 6 rounds of carbo/taxol finished in March 2010 then debulking surgery in May 2010 and then 12 sessions(6 rounds )campto/gemzar finished on October 28th and scan came back clear after 4 rounds and the next scan is on December 22nd.

KarynH said:

When were you diagnosed?
When were you diagnosed? August 2009
What stage? 4

Are you the patient, or a caregiver: daughter/caregiver
OVCA, clear cell, or PPC? OVCA

What was your highest CA125? 993
What was your lowest? 36
What is it now? 44

What's your current status? No surgery.(Sept.- March --Carbo/Taxol) (March - Oct.--Taxol/Carbo/Avastin)
Currently staying on Avastin alone along with daily cytoxan. Two small spots still remain on CT, but is a great improvement over a year ago.

new
When were you
new
When were you diagnosed? Nov 2009
What stage? 3c (Serous Carcinoma Papillary) OVC

Are you the patient, or a caregiver: Patient

What was your highest CA125?1500
What was your lowest? 15
What is it now? 25

What's your current status? Recurrence Sept 2010..after having 9 rounds of Carbo/Taxol. Its said to be around my liver and spleen.

Currently I transfered my care to Fox Chase, and I get a port put in Nov, 17, 2010. I start a clinical trial AMG 386/Doxil on Nov. 22nd 2010.
Doctor's are saying that I may never be in remission. They want to focus on shrinking and controlling the disease.
But I'm believing in a higher power that has the ability to cure me completely.

MoMomsa said:

Getting us all on the same page
Seeing the strength here and everything everyone goes through makes me realize how blessed I am.

I am/was the patient
DX Jan/2010
Stage 1 something....
Two surgeries for Ovarian Cancer
No treatment needed. No idea of my CA125...but I was told it's normal. I think I'll find out just so I know.

They found it by "accident" and I was deemed a miracle. After seeing everyone's story here. I see that I am. I almost felt guilty for posting, mine is so minor compared to everyone elses. But, I'm so thankful, it's a reminder to me to spread the word about this almost silent disease to everyone I know.
7 months later--August 2010 I was diagnosed with Thyroid cancer. HAd RAI and now I'm doing fine.
Hugs to all,
Janet

Mom - Stats
I am the daughter of patient


When: July 2010
DX: OVCA Stage IV
Surgery: July 29, 2010
(numerous complications and hospital stays)

CA125 - 1748 before surgery
Lowest: hopefully to come after 4 more infusions of carbo/taxol
Now: 99

RoniLynn said:

When were you diagnosed?
When were you diagnosed? October, 2009
What stage? IV

I am the patient
OVCA

What was your highest CA125? 2000+
What was your lowest? 12
What is it now? 12

What's your current status? 6 treatments of Carbo/Taxol from Dec, 2009 til March, 2010. NED for April and May, 2010 and then recurrence found in late May. Been on different chemo meds (can't remember the names) for 2 out of ever 3 weeks since. After CT scan last week, found out that my "spots" have grown. I go to the Oncologist next week, I may be starting a clinical trial so that we can give my body a rest from chemo.

Roni

getting on the same page

When were you diagnosed? (May 2009)
What stage? (Ic)

Are you the patient, or a caregiver: (patient)
OVCA, clear cell, or PPC? (OVCA)

What was your highest CA125? (190)
What was your lowest? (2)
What is it now? (2)

What's your current status? I just had CT scan and CA 125, only thing on my CT scan is gall stones and I know I can deal with those after surgery and chemo treatments.

I too feel almost guilty posting my status as I was one of the lucky ones to be diagnosed early and to have gotten outstanding medical care from a great surgeon and oncologist. And although I am free of this dread disease at this point, they still go in and look for it every three months so the idea of it never goes away completely. I often say I am the poster child for early diagnosis as I feel so good it's scary. I will keep supporting and encouraging research to somehow find it early because I am proof that works or for some kind of vaccine to prevent recurrence. You all inspire me and I think of you often and continue to pray for a cure.

When were you diagnosed?
When were you diagnosed? February 1, 2010
What stage? IIIC

Are you the patient, or a caregiver: Patient
OVCA, clear cell, or PPC? OVCA

What was your highest CA125? 241
What was your lowest? 8.7
What is it now? 8.7

What's your current status? NED!! Since Sept 20th. Had major debulking on Feb 10th 2010 (including ovaries,appendix,omentum and 2 bowel resections) 4 1/2 months of Carbo/Taxol chemo with IP chemo as well. Just want to say that CANCER SUCKS!!!!

Good Thread

When were you diagnosed? June 2009
What Stage 2b
Patient
clear cell
Highest CA125- 200's
Lowest CA125-5
What is it now 7
What is your current status? I am NED following 6 treatments of Carbo/Taxol.
Thank-You, Carlene

Great idea...
When were you diagnosed? Dec. 2009
What stage? IIIc

Are you the patient, or a caregiver: patient
OVCA, clear cell, or PPC? OVCA

What was your highest CA125? 3600
What was your lowest? 21
What is it now? 720

What's your current status? Had debulking surgery Dec. 2009; finished carbo/taxol 8 treatments in June 2010. Proclaimed NED July 2010; CA-125 up to 49 in Sept; up to 314 in Oct; 720 in Nov. Beginning Gemzar treatments tomorrow 11/16. CT scan shows nothing.

Stats

You're right, it is hard to compare becasue each of us is very different.  And, unfortunately, many of the women on this thread are no longer with us.  But here goes:

When were you diagnosed? (July 2009)
What stage? (IIIc)

Are you the patient, or a caregiver: (patient)
OVCA, clear Cell or PPC? (OVCA)

What was your highest CA125? (4600)
What was your lowest? (<1) 
What is it now? (2.5)

What's your current status? NED since February 2010

I am BRCA1 positive

I am involved with a group of women who are pursuing integrative therapies in addition to or in lieu of current, active treatment.  Every one of them has had at least first line chemo.  My observation is that two things seem to be consistent with the long term survivors who stay NED or stay NED longer.  They either started integrative therapies immediately upon starting traditional treatment, i.e. they didn't wait until after they were in remission.  It also seems there is a link with long term survival and women who received more than the normal amount of chemo treatments for their first line chemo,  It's not a clinical trial, obviously, but there are about 100 women in our group,and the results are pretty consistent.