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Ok, My Mom was diagnosed with stage 3 Ovarian Cancer in December of 2005. Her CA-125 were at 38. She had a hystorectomy and some intestines removed- leaving her with an Ostomy bag. After 6 months of Chemo- Her levels went down to 7 and the Ostomy was reversed. In January of 2007 her cancer had returned and her levels were at 84. When she returned home from vacation 1 week later her levels were at 5,000. She went through the chemo again for a few months and the levels came down to 2,300. She has bowel obstruction and needed an emergency surgery (this was April 2007) the dr went in and removed all but 10inches of her intestines and again, she has an Ostomy bag. 4 months later- she wanted to begin Chemo again and her levels were 15,800. She has gone through 2 months of the chemo and her levels have increased.. all in two week increments.. from 15,800 to 34,500 to 42,900 and now 6 days after the last test are 50,000. Ok, so here is my question. Has anyone ever heard of the numbers getting so high? How high do they go? The dr's tell her not to focus on the numbers.... but when they come down it is a good thing.. How can you not focus on the numbers? She is so weak.. sleeps all the time and can't get out of bed without help now.. I wish I could do something for her and she DOES NOT want to give up this fight.. She cannot understand why she is not getting any better and it breaks my heart. Does anyone have any advice? Any similar situation. Any information would be helpful. Thank you!

Suzanne
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3 Comments
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107366_tn?1305683975
Hi Suzanne,

I am trying to find the right thing to say, but I'm not sure I can.  Personally, I have never heard of a CA125 getting that high, but I am not exposed to a lot of OvCa patients except for on this board.  This is ONLY a guess, but something to think about.  Other issues in the body can cause CA125 results to be skewed.  GI issues are one of those things.  It is possible that perhaps since she only has 10 inches of intestine left, it could be affecting the results somewhat.  I totally understand the frustration of doctors telling you not to focus on the numbers, yet they keep testing to see if they are down.  What treatments have her doctors tried?  Are they going to change her chemo, or continue with the same regimen?  Best wishes to you both.  This fight ain't for the weak!

Gail  
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You and your mom have been on quite the ride over the last 8 months, no wonder your mother is tired.  My recommendation would be to ahve a talk with your mother's doctor and find out exactly what is going on.  You need some answers regarding her condition and if there is more tumor.  As Gail wrote is there a plan to switch chemo, or would your mother have trouble tolerating it.  Meanwhile, you keep loving her and being there for her.  She is lucky to have you, take care of yourself.  
Marie
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Hi Suzanne, My Oncol. says the same thing... "don't worry too much about the numbers, but more on how you feel"... but it doesn't sound like your Mum is feeling very well. I've heard of one lady with a CA.125 of 19,000 and she was still going to work each day. My highest has been 7500 and I felt like there was nothing wrong with me, so yes... we are all differe re the numbers. I was wondering that myself one day...how high can the numbers go before we do need to worry? Just a question to you... why did your Mum have the colostomy bag reversal so soon after the original operation? Many Doctors won't do the reversal under 12 months, because of the threat of the cancer returning. Is your Mum doing chemo now? If she is, what are they giving her? I agree with Gail... quite often other 'goings on' can cause the numbers to go higher than they normally would, so perhaps some of those numbers can be attributed to the aftermath of the operation. I suppose one of the important things is while your Mum is feeling weak, is to get as much nourishment into her, so that she has the physical strength to take on the chemos. If her appetite isn't good, or she finds it hard to eat, perhaps some nourishing drinks would be good for her. It sounds like her mental strength is there, and that's half the battle I think. Tell your Mum never to give up. I was dx Stage 4 in Feb'04 and still going o.k...
Please stay in touch and let us know how your Mum is doing, and we are always here to support you in this battle. Best wishes and hugs from Downunder....Helen...
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