interpret ca125 level

[penny3361]

I am 46 yrs old diagnosed on 7/24, before surgery CA125 level was 1527.  I was optimally debulked, serous adenocarcinoma in both ovaries, one tube, periteneal fluid, omentum, and 6 out of 36 lymph nodes were positive for cancer.  I am State IIIC, grade 3.  After surgery my CA 125 was 100.  After first round of chemo, IV Taxol/Carbo, my CA125 went down to 24.6, I was happy about that.  But after my 2nd round, this time IV Taxol, IP Cisplatin, and IV Taxol my CA 125 only went down to 23.2, I am worried about this small drop after all of the dramatic drops.  Am I still doing OK or is the treatment not working as well. Thank you for any advice you can give me.

[Kimchi]

I, too, cried for hours after reading a post that had information that I did not expect to read.  The reason I cried so much was because that post made me realize that my Stage 4 OC meant a lifetime battle till either I die from it or they find a cure!!! And I can tell you that I cry on average once a week when I read this forum either because another life has left us  or a recurrance or meds not working or ca125 levels not decreasing or no insurance or not accepted into a trial or because someone posts a reply that gets misconstrued.  

This is the reality of this disease and we have to allow it to sink in.  Please go back and read as much as you can in the archives here.  There is a lot of information to help you understand what you are dealing with

For me,  I am hoping that through the exchange of informaiont on this forum, I will find a common denominator that will be THE CURE.  

[sktmom]

I am sorry your wife cried for hours, but the very nature of this disease I think is the true cause... not the advice she has received. I too am very recently diagnosed with stage iv and reading about this disease.... whether on this site... or any other site.... is enough to make anyone cry for hours. The best way to fight this disease is honest answers even if they are difficult. I feel that the information Alan gave was hopeful. He was positive about your wife's numbers and offered an alternative treatment when your wife questioned if her treatment was still working. This terrible disease is what we should be angry with not each other. We all need each other to remain strong against this disease. I know you are upset about your wife's diagnosis, but remember too that you were lashing out at a man trying to offer help and who, like you, is also emotionally taxed..... he lost his mother to this disease just days earlier. He has fought tirelessly against this disease with his constant research and by offering hope to the people of this site with the information he has found. By offering that information.... he is offering a chance to your wife that his mother no longer has.... to fight this disease. I hope that neither your wife or Alan leave this site because we all need each other, but even more so I hope that all anger is directed towards fighting this disease and not each other.
Kimberly

[Jan214]

Sitting in the pre dawn dark outside and hit the wrong button, Sorry.  You have to understand that most of us on here want the cold hard facts.  We offer and receive support from all of the wonderful people on this forum.  Alan was very knowledgeable as he spent much time trying to find ways to help his mum and she just died.  I am sorry your wife is upset, but so are we all.  Do you think any of us are happy about our prospects.  I got only 5 mths remission between bouts and yes I am angry as H---, but not at anyone here.  Penny needs to come back on herself and let us help her understand what she is going through.  It can be very difficult the first time.  I say the first time because she is not going to cure stage 3c cancer.  I am sorry but it just doesn't work that way.   What do you think this is: breast cancer.  If all she wants is cheering up and feel good advice we can give her that but she has to let us know she can't handle any real info.  Go to a gym and punch a bag or do something else to take out your anger at this dreaded monster.  It is hard on the caregiver so make sure you find time for you.  Good luck to both of you.
Jan

[Anna-maria74]

Hey come on now anger is all part of the process - swallow it! He isnt angry at anyone he is angry at the cancer - if the milkman is late right now he will probably punch his face in. Darrell would be exactly the same if someones comment made me cry for hours (in fact he would hunt them down like a rabid dog), he is protecting his wife in the only f****** way he has left. Its not often that this sort of thing happens on here and in many ways I think its not such a bad thing. Anger can be very positive in unleashing pent up emotions and I think this site is a healthy enough way of doing so - providing people dont take things to personally. After all this isnt a WI meeting is it. You guys are so quick to turn :|

Anna X

[crecco]

I too am 46 years old and was dx 2 yrs ago at stage IV with mets to the liver. I had lots of questions for my onc with the first and foremost being "how long do I have?" He didn't give me a straight answer as I have found out later each person is different. But eventually it will get us, whether we like it or not. And I honestly believe all of the women here would prefer the latter. Alan has been a rock on this board. I haven't been here long but its easy to see. He did not tell you anything that your wifes onc. should have already told her (without being asked). I can understand your pain and I can feel your wifes as I am right there with her. But I have found over the last 2 yrs that if you give in to the depression, it only makes it worse. When I was first dx, I went online and read everything I could about ovarian cancer and honestly, it upset me worse than anything I have ever read on this board. If anything, the women here with their never ending battles and their stories of survival with the odds so against them has given me a new found hope that I didn't think I could have. The best thing any of us could ever do is to put all the energy we use up worrying and feeling sorry for ourselves into our fight to live. And you should direct your energy into everything you can do to help instead of anger at thevery people that are trying to help you. It won't be a joy ride, it hasn't been for any of us, but we are all still here fighting as hard as we can. And for that, each and every one of us has more to be thankful for than we ever thought.  Chris

[vegas2cr]

Please leave disneyland and come home.. we are dying don't you understand that. But we are not with out hope..... when you ask a question you are going to get what we consider honest opinions...I have stage 4 I am in dormancy they won't even say remission cause it is coming back. Please put your anger where it belongs... to Ovarian cancer... not a gentleman who spent thousands of hours trying to save his mothers life... Upset of course I am upset... I am only 58 years old.. I have kids and grandkids.. do you think I want to die... NO but the reality is this is a place I can come and know others understand how I feel.. If you were offended then this is not your place and you should not ask questions..
I am sorry your wife was upset... so am I... everyday I think of dying./..

[EchoUK]

Hello Alan,

I do hope that the correspondence above isn't the reason why you have decided not to post any more.  I know that there are many 'regulars' on this site who look out for your input and what you have said is absolutely correct.

To Penny's husband - I am sorry that your wife has been so upset, OVCA is a hard disease to face and most of the posters to this site are stage 3c and stage 4. Alan has been a great support and no more so than for his own mother. Believe me if you search the internet you will find many medical sites giving the same information and a lot more which is difficult to come to terms with as well.

I hope your wife feels better soon,

Best wishes,

Ruth

[SimplyStar]

In your "infinite wisdom" you are attacking a very caring man, he stood by his mother to the end of this dreadful disease. He researched tiredlessly for answers and shared them with all the forum. Now he has resigned his position of the trust we all had in him, because he felt guily about your post.  I know what it is like to warch a loved one fight this, my daughter has OVCA. I do not take my anger out on anyone. Like Alan I direct my feelings to help and support.  These women are in the fight of their lives and I think if you read their posts , you will see that most do not give in to anger and frustration.  They search for answers.  They also hope for a "cure" but  for most of them,  a remission is all they get.  I am sorry that your wife has OVCA, but to blame others for her feelings, is not acceptable. There are so many brave women on here, all helping each other, that I was amazed to read your reaction.  Leslee's Mother

[alanpvegas]

I'm sorry it was not meant to be that way....phenoxodiol trial is something you should both consider...it is one of the biggest things on the horizon for ovarian cancer that can have a big impact.  The problem with ovca is platinum resistance which almost always happens, phenoxodiol allows platinum resistant ovarian cancer to become 'sensitive' again to cheomtherapy.  This has been the problem with ovca for the longest time.

But it is true, the goal is to keep the cancer contained instead of a cure since she is IIIC.  Yes it is possible for a cure though!  But a cure is defined by medical establishment is just no signs of cancer 5 years plus (almost everyone elses is no cancer whatsoever).  This is possible, I think there are people on this forum that have achieved their cancer in such a remission they are years out.

I'll leave it alone now, your wife asked an opened ended question about her treatment and I should have told her nothing new...is her oncologist telling her something different?  That is dangerous....

She is doing good with her counts and everything from the post...I would have died to have had similar response for my mom (she *never* went below 200 and that was the lowest it ever went).  I have no idea what to say, this is just a horrible fact of this disease and I'm suprised.  

With that I'll say I'm sorry and won't post anymore....

[penny3361]

this is penny3361's husband. in all of your great and wonderful knowledge of my wifes condition too much info at this time while she is sick from chemo and very depressed from the great change in her life sent her into a state of wanting to give up. our goal is to kill all the cancer. sometimes when people are fighting for their lives they don't need any negative advice that could shatter the little bit of hope they have. of all of the hundreds of messages she has recieved yours is the only one that has caused her cry for hours. please try not hurt anyone else with your infinite wisdom. thank you

[alanpvegas]

Those are good numbers, and typically they'll followup with radiological testing (ct-scan, etc).  If radiology matches ca-125, then ca-125 is a good test to measure your progress (for some it is not).  Your number typically follows in the 'normal' range for most labs ca-125 tests (0 to 35).  CA-125 can be effected by other things as well, so just because it doesn't go to 0 or go lower does not mean the treatment is not doing what it is intended to do.  Also remember it's not going to get all the cancer cells...already some are learning to adapt to this chemo...it's just a way of life with this disease.  The goal in advanced ovarian cancer is to get rid of as much as you can (knowing that others are 'adapting').  This is sort of like a battlefield...you are trying to wipe out as much as the enemy as possible so only a handful remains.  That handful may get 'reinforcements' quickly or slowly (slow or agressive cancer cells).  

Keep in mind the Phenoxodiol trial....although it is for women who become platinum resistant, in the future oncologists can use it off label for what most want to do (or are thinking about): using it *during* first line chemotherapy.  Imagine the cancer not becoming plat resistant?  The successes?  whoa....

Anyways keep this board informed of what is going on, there are people on here who have had lots of treatments and can suggest different ones if this doesn't work.  Your goal here is remission not cure and to keep it a chronic disease until progress can be made.  This is possible and becoming more possible with upcoming drugs and research.

[Jan214]

My #'s started at 585, post surgery 90.  It went down rapidly with first treatments but once it got under 50 the drop was small until I got to 8.5.  As long as it is going down you are in good shape.  If the Doc didn't think the treatment was working he would change to something else.  Hang in there and good luck.
Jan

[msjazz]

i just found one of my office reports. i was 3c ca125 was only 276 pre surgery. it was the 4th..  round of the ip chemo before my ca125 got to 8. all 4 treatments were the ip regimen. then i did 4 rounds of the iv with carbo/taxol to get to 5. so it sounds like your numbers are good .keep up the good work i found the ip pretty tough.

[SimplyStar]

It did not rise, most important of all will be the scans you receive.  Sounds like you are getting  a good chemo combination, stick with it and let them worry about the numbers. Good Luck