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started with CA 25 of 4,ooo anyone else with such high numbers & status of those of you with single-digit scores

Susan P's picture
Susan P
Posts: 96
Joined: Sep 2013

I’ curious about those of you with a CA 125 in single digits  - Have U had your debulking& are you in remission?

 

My numbers have been very high.

4,000 – in May before any chemo.

1,700- after first chemo

  500 – after all three ofcarboo/taxal the first round.

250 – after first of second round.

Large but going in the right direction.

 

I have not been debulked yet – will that help?

Hasa anyone else dealt with such big numbers .

 

 

Tks Susan from Alberta

 

 

 

 

kikz's picture
kikz
Posts: 1300
Joined: Jun 2010

Within a few weeks it was over 9000.  After first chemo 3200.  After third chemo 800.  Before surgery five weeks later 1600.  13 after surgery and 7 when chemo done.  That was three years ago.  Recurrence Iin 2012.  CA 125 reached 191 and down to 4 after four infusions.  My next one is in December.

Karen

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kikz's picture
kikz
Posts: 1300
Joined: Jun 2010

Within a few weeks it was over 9000.  After first chemo 3200.  After third chemo 800.  Before surgery five weeks later 1600.  13 after surgery and 7 when chemo done.  That was three years ago.  Recurrence Iin 2012.  CA 125 reached 191 and down to 4 after four infusions.  My next one is in December.

Karen

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Sorry using cell and it's hard.

Alexandra's picture
Alexandra
Posts: 1299
Joined: Jul 2012

It's not the absolute number, it's CA125 trend and kinetics that are meaningful.

You are responding to chemo very well. If CA125 decreases by >50% after each round of chemo, it predicts good prognosis. If after 3 rounds of chemo it gets to normal range (<35) - even better prognosis.

I started from (1083) at diagnosis, after chemo#1 - (519), chemo#2 - (126), chemo#3 - (29), chemo#4 - (9); after debulking - (8), after 3 more chemos - (4)

CA125 can spike after debulking, it does not mean that your treatment is not working. Surgery sometimes irritates peritoneum lining and causes protein levels temporarily to go up.

Good luck!!!

seatown's picture
seatown
Posts: 259
Joined: Sep 2012

Alexandra is right--it's how your CA125 # changes with treatment, not your starting point, that matters. Those are almost exactly the words my oncologist used when I was alarmed at my original high CA125 #. My CA125 was about 2,800 upon diagnosis of primary peritoneal cancer (which is treated just the same as ovarian) & steadily declined over 6 months to within the normal range, before any surgery. It has remained in the middle of the normal range for several months now.

Further, it appears that you have had a steady decline in CA125 since you started treatment, instead of sometimes down, sometimes up. The same was true for me, & I've been told that's another good sign. 

Hoping you'll get to my present point: CA125 in the middle of the normal range & as of 1 wk ago today, N.E.D.--no evidence of disease!

Good luck. Will be looking forward to hearing your progress.

Susan P's picture
Susan P
Posts: 96
Joined: Sep 2013

I would like to thank all of you for taking the time to respond to my question about starting with CA125 of 4,000.

 

Thank you for reminding me this is only an estimate marker and reassuring me that I am going in the right direction.

 

Your shared experience is appreciated as well as encouraging.

 

 

scatsm's picture
scatsm
Posts: 267
Joined: Apr 2013

Hi Susan,

My initial CA125 was 2200, went up after the first chemo, then went down steadily for the next 3 chemos. After debulking it went to single digits and has stayed there since. That has been since January 2012. I was declared NED in March 2012 after another 4 rounds of carbo-taxol. I hope that you will have the same experience!!

Susan

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