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rising ca125

rockchicksurvivor's picture
rockchicksurvivor
Posts: 46
Joined: Feb 2010

Hi, I just got the news that my ca125 has doubled since the last one and I am very scared, frustrated etc!! I have been going through my 2nd battle for 8 months now and dont know what is going on or what will happen next until I see my doctor next month I guess. I hope for the best and just want to be NED again! hugs to all

LPack's picture
LPack
Posts: 658
Joined: Oct 2008

I so know how you feel. My second battle started last July and for 10 months more chemo. Off for 2 months and then CA125 went from 17 to 214 and then up to 360. (Scary how fast it went up this time, makes me wonder how well Cisplatin/Gemzar really was?)

It is frustrating and so easy to get discouraged. Hope is so powerful!! HOPE - to desire something with confident expectation of its fulfillment. I am hoping with you!!!

"May the God of hope fill you with all joy and peace as you trust in Him......." Rom 15:13

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

If I were you, I would try and get that appointment moved up. How high is your CA 125? If mine doubled, for example, it would still be under 15, so I would not go completely nuts, but if it was triple digits, I would be asking for a CT scan, and pronto.

Carlene

rockchicksurvivor's picture
rockchicksurvivor
Posts: 46
Joined: Feb 2010

due to the chemo I am currently getting I have been getting a catscan every other month for awhile now, so far staying stable but now that it has doubled I am worried but not freaking out yet! It is 167. I will talk to my nurse on monday to see what is next...

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

My thoughts are with you. This cancer is an unrelenting beast and I hate it so much. It takes over our lives and thoughts and prevents us living. I am wishing you the very very best. Love Tina xx

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Just wanted to send hugs n prayers your way. Bonnie

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

It sounds like you are on top of your situation..be sure to follow up...your apprehension is normal..this is a crazy disease..remember though Ca-125 can be wacky..it's really the CT scans that tell us what is happening...

nancy591's picture
nancy591
Posts: 1057
Joined: Sep 2009

I understand. I too recv'd news on Friday that my ca125 jumped 8 points. I know that my ca125 is unreliable but I still want to see it going down. I have a scan next week scheduled. I am upset but I realize I have little control over it. I have been on chemo since January with little success. If this one proves unsuccessful as well I will probably start a clinical trial. A doctor can be a aggressive as hell and it doesn't mean a thing if your body doesnt' respond to the chemo!!

mopar
Posts: 1995
Joined: May 2003

I know the anxiety you're feeling. But everyone has offered good advice - there are so many different ways to look at a rising CA125. My numbers are usually the red flag for me, so I was petrified a few years ago when my CA125 more than doubled! However, I traced it back to having taken Boniva the month prior to my blood test. My doctor said 'I don't think so', but I was absolutely sure of it. I will NEVER take Boniva again. I was in such pain and I was so sick. When I talked to the PA about it, she agreed that Boniva can cause inflammation, thus the rise in numbers. So, you can imagine how relieved I was when my CA125 was back down 1 month later to my 'normal'.

Again, there are so many reasons it can go up. Here's keep the good thoughts. Sending prayers and hugs your way. If you're able to see your doctor earlier, let us know what he says. Till then. . .

(((HUGS)))
Monika

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

I know how you feel. The results of a CA125 test seems to control all of us. It is hard to put it in the back of our minds. I tell my family about the number and they will try to pep me up. And I know that there are reasons that sometimes the number will rise and it doesn't mean anything, but it is so very hard not to dwell on it. They just don't know the fear that you have just thinking about it until you can talk to the doctor. My doctor told me that he has patients and their numbers are a lot higher than mine and there are those that the numbers are all over the place and they are cancer free. We are all different. I feel your frustration. Praying for you.

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

I know how you feel. The results of a CA125 test seems to control all of us. It is hard to put it in the back of our minds. I tell my family about the number and they will try to pep me up. And I know that there are reasons that sometimes the number will rise and it doesn't mean anything, but it is so very hard not to dwell on it. They just don't know the fear that you have just thinking about it until you can talk to the doctor. My doctor told me that he has patients and their numbers are a lot higher than mine and there are those that the numbers are all over the place and they are cancer free. We are all different. I feel your frustration. Praying for you.

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

I know how you feel. The results of a CA125 test seems to control all of us. It is hard to put it in the back of our minds. I tell my family about the number and they will try to pep me up. And I know that there are reasons that sometimes the number will rise and it doesn't mean anything, but it is so very hard not to dwell on it. They just don't know the fear that you have just thinking about it until you can talk to the doctor. My doctor told me that he has patients and their numbers are a lot higher than mine and there are those that the numbers are all over the place and they are cancer free. We are all different. I feel your frustration. Praying for you.

msfanciful's picture
msfanciful
Posts: 581
Joined: Nov 2009

Hi,

I know it's easier said than done, but whatever you do, try not to let fear get the best of you, it certainly can't help you to get better.

As one who has just completed her 4th battle of recurrence, you begin to look at each possible new treatment as the one that may do the trick. Oh most definitely stay on top of your position. Usually if the numbers begin to triple in a short period of time, the oncologist will order either a cat-scan or pet-scan to determine the true nature of your position.

I'm hoping for the best for you and please keep that spirit high!

Sharon

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