Bummed Out And Pissed Off
My friend Tracy, who refuses to read this board, had surgery in April of 2009. She was a 3C and had 6 treatments of Carbo/Taxol. She had the same surgeon as LeesaG and me, at the same hospital. Her CA-125 never went below 25. She had a CT Scan last week and now has a tumor on her bladder. It makes me so mad. It has not even been a year for her and she can not even get a break. I prayed so hard for her last night. It scares the heck out of me. I have a CT scan next month and I think "oh what new thing are they going to find". I will be NED for 1 year in June, if I make it through this next scan. My CA-125 has been holding between a 5 and 6 for the last 6 monthes, but that does not even give me any comfort. Sorry, for being so negative. I am just venting. I wanted my friend to be okay. I ask god to please "just give me one summer without breast cancer or ovarian cancer". The breasts are all clear for now, so he did answer that request. The ob/gyn oncologist did graduate me from an every 4 month check-up to an every 6 month check-up. I still get my CA-125 drawn every month and see the regular oncologist every 3 monthes, have a CT Scan every 6 monthes, and an MRI on my breasts every 6 monthes. I am tired of all of these doctor's appointments. Sorry, for complaining. I just need to let some steam off. My husband just holds me and lets me rant and rave. He's a saint. I really just want to scream. Thank-You, Paula
Comments
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different diagnostic categories
Clinically, patient X whose CA125 never goes below 12 after standard first-line chemo is "resistant," making her cancer "persistent" which affects prognosis, if you get my drift. Patient Y whose CA125 does go below 12 (or so) falls into a diagnostic category with more favorable outcomes. Those are the sad/happy facts.
I'm sorry you and your friend are going through this, but glad you are there for each other. My mom (resistant, persistent, lowest CA125 was 23) has two friends battling cancer, and the three of them have become close in a most wonderful way.0 -
I read similar resultsBarbara53 said:different diagnostic categories
Clinically, patient X whose CA125 never goes below 12 after standard first-line chemo is "resistant," making her cancer "persistent" which affects prognosis, if you get my drift. Patient Y whose CA125 does go below 12 (or so) falls into a diagnostic category with more favorable outcomes. Those are the sad/happy facts.
I'm sorry you and your friend are going through this, but glad you are there for each other. My mom (resistant, persistent, lowest CA125 was 23) has two friends battling cancer, and the three of them have become close in a most wonderful way.
I read similar results when I was actively going through my first treatment. I was desperate to get under 10. My ca125 went under 10 by my 4th treatment. The lowest it went was 7. I had a reoccurence a little over 7 months after completing chemo. I met a woman online who's ca125 went under 5 and she is now terminal a little over 2 years from diagnosis.
I know a woman who's ca125 never got below 10 and she is 3 years without a reoccurence. Go figure! In my opinion it is not a reliable indicator on who will stay in remission and who will not.0 -
I have not heard/read thisBarbara53 said:different diagnostic categories
Clinically, patient X whose CA125 never goes below 12 after standard first-line chemo is "resistant," making her cancer "persistent" which affects prognosis, if you get my drift. Patient Y whose CA125 does go below 12 (or so) falls into a diagnostic category with more favorable outcomes. Those are the sad/happy facts.
I'm sorry you and your friend are going through this, but glad you are there for each other. My mom (resistant, persistent, lowest CA125 was 23) has two friends battling cancer, and the three of them have become close in a most wonderful way.
I have not heard/read this but I will ask my doctor when I see him on the 24th. My CA125 has gone down to 12, but never lower.
Carlene0 -
NumbersHissy_Fitz said:I have not heard/read this
I have not heard/read this but I will ask my doctor when I see him on the 24th. My CA125 has gone down to 12, but never lower.
Carlene
The one standard answer both of my doctors told me when they gave me my numbers and I asked "what does this mean?" is this:
You are not the number. Your progress depends largely on your attitude and outlook. The numbers tell us if the cancer is responding to treatment.
I know, it's too simplistic and pollyanna-ish, but the bottom line is, if I let the numbers, when they get into the normal range, worry me, I will go stark, raving mad.0 -
HI Paula
I am sorry about your friend. One thing for sure I am learning about this disease is that it has it's own course. I don't blame you about being sick of the doctor appointments, they are a big pain and anxiety producing as hell, and frankly, this is an unfair disease. You got the unfair end of it. As far as CA-125..it's a crazy number. I don't have ovarian cancer and mine has never fallen below 45...my ovaries and fallopian tubes were removed and it remained 45...My sister, who does not have ovarian cancer...45 the exact same number! My mother's went from 128 to 33 in 3 weeks time after her 6th chemo.....her gyn/onc was ecstatic. We choose to believe she's in remission (after we were told that would never happen) who knows what it all means. I am sorry about your friend.0 -
I'm so sorryLisa13Q said:HI Paula
I am sorry about your friend. One thing for sure I am learning about this disease is that it has it's own course. I don't blame you about being sick of the doctor appointments, they are a big pain and anxiety producing as hell, and frankly, this is an unfair disease. You got the unfair end of it. As far as CA-125..it's a crazy number. I don't have ovarian cancer and mine has never fallen below 45...my ovaries and fallopian tubes were removed and it remained 45...My sister, who does not have ovarian cancer...45 the exact same number! My mother's went from 128 to 33 in 3 weeks time after her 6th chemo.....her gyn/onc was ecstatic. We choose to believe she's in remission (after we were told that would never happen) who knows what it all means. I am sorry about your friend.
Hi Paula
I am so week right now but I have to respond to your post. Don't ever apologize for coming here and complaining, goodness knows how often have I? And all I ever gotten is love and kindness and hope. So you just do what you have to do. I am so sorry about your friend, but try to keep possitive thoughts going Paula. Keep your stregnht up and try not to look to far ahead, one day at a time. This is what I have to do. I'm going through hell now too, after 2 years of feeling pretty good for someone with cancer to everything falling apart all at once, it is frustrating, scarey as hell and yet I won't let this ruin my day, but it does...lol...we all know exactly how you feel. That's the reason we come here cos we are the only ones that truly understands what each of us are going through, our friends and family really don't know exactly how we feel.
My thoughts and so much love are with you and your friend and naturally lots of prayers out for you. know how much you are loved in this room and don't let this horrid "C" get to you, don't feed into this beast.
Linda0 -
So right Lindadorion said:I'm so sorry
Hi Paula
I am so week right now but I have to respond to your post. Don't ever apologize for coming here and complaining, goodness knows how often have I? And all I ever gotten is love and kindness and hope. So you just do what you have to do. I am so sorry about your friend, but try to keep possitive thoughts going Paula. Keep your stregnht up and try not to look to far ahead, one day at a time. This is what I have to do. I'm going through hell now too, after 2 years of feeling pretty good for someone with cancer to everything falling apart all at once, it is frustrating, scarey as hell and yet I won't let this ruin my day, but it does...lol...we all know exactly how you feel. That's the reason we come here cos we are the only ones that truly understands what each of us are going through, our friends and family really don't know exactly how we feel.
My thoughts and so much love are with you and your friend and naturally lots of prayers out for you. know how much you are loved in this room and don't let this horrid "C" get to you, don't feed into this beast.
Linda
. "That's the reason we come here cos we are the only ones that truly understands what each of us are going through, our friends and family really don't know exactly how we feel."
This board is my lifeline. Lately, for some reason, I have been angry. I'm wondering if it is the chemo drugs. I am getting tired of all the "stuff", the dr. visits, the chemo, the labs, the uglies, etc. I also am a caregiver for my 85 year old Mother, who has Alzheimers and is in a nursing home. 'Still trying to be the perfect wife, Mother, etc., which isn't working too well! LOL Yet, I am lucky. I am surviving and can put food on the table.
Those people who say, "You just need to take care of yourself," must have fulltime help!LOL
I don't think anybody really can understand the physical and emotional roller coaster we go through each day, except the great ladies on this board! Luv, Froggy0 -
Question, BarbaraBarbara53 said:different diagnostic categories
Clinically, patient X whose CA125 never goes below 12 after standard first-line chemo is "resistant," making her cancer "persistent" which affects prognosis, if you get my drift. Patient Y whose CA125 does go below 12 (or so) falls into a diagnostic category with more favorable outcomes. Those are the sad/happy facts.
I'm sorry you and your friend are going through this, but glad you are there for each other. My mom (resistant, persistent, lowest CA125 was 23) has two friends battling cancer, and the three of them have become close in a most wonderful way.
I have never heard those statistics you wrote here. Where did you find those? My CA-125 never went below 22. My doctor didn't tell me that made a worse prognosis. I'd like to look that up. Thanks.
I'm so sorry about your friend's cancer. I know this is so frustrating when it comes back. I know it has been for me too.
Marty0 -
I searched high and low, andMawty said:Question, Barbara
I have never heard those statistics you wrote here. Where did you find those? My CA-125 never went below 22. My doctor didn't tell me that made a worse prognosis. I'd like to look that up. Thanks.
I'm so sorry about your friend's cancer. I know this is so frustrating when it comes back. I know it has been for me too.
Marty
I searched high and low, and I did find similar studies. None, however, were less than 15 years old.
Within those studies I found varying cut-off points for the CA 125, ranging from a low of 10 to a high of 16.
I also found several studies which conclued that patients with a CA 125 of less than 60 after the third chemo session had a better prognosis than patients whose CA 125 (after 3 treatments) were 60 or higher. Out of curiosity I looked back at my own numbers and found that my CA 125 was 53 after my third treatment. In light of so much conflicting information, though, I can't say that makes me feel particularly warm and fuzzy.
I read that pre-surgery, the CA 125 could run as high as 20,000. Super high numbers prior to surgery are not an indication of how far the cancer has spread, how long the patient will live, or how well she will respond to treatment.
A lot of these studies involved a very limited number of patients - often less than 200 - and I think that alone makes them somewhat suspect.0 -
ca125Hissy_Fitz said:I searched high and low, and
I searched high and low, and I did find similar studies. None, however, were less than 15 years old.
Within those studies I found varying cut-off points for the CA 125, ranging from a low of 10 to a high of 16.
I also found several studies which conclued that patients with a CA 125 of less than 60 after the third chemo session had a better prognosis than patients whose CA 125 (after 3 treatments) were 60 or higher. Out of curiosity I looked back at my own numbers and found that my CA 125 was 53 after my third treatment. In light of so much conflicting information, though, I can't say that makes me feel particularly warm and fuzzy.
I read that pre-surgery, the CA 125 could run as high as 20,000. Super high numbers prior to surgery are not an indication of how far the cancer has spread, how long the patient will live, or how well she will respond to treatment.
A lot of these studies involved a very limited number of patients - often less than 200 - and I think that alone makes them somewhat suspect.
I hope you aren't causing yourself undue anxiety! I googled information in Jan. 2009 so I don't recall where I read this information. The information I read back then was a study done in another country. Sweden maybe. The magic number for this study was 10, not 12. All in all the study said that the women who went under 10 had the longer time of remission then those that did not. The study also talked about how quickly the ca125 fell, ie a 50% drop vs 25% drop after the first treatment. I don't remember the specifics on that.
I never mentioned to my surgeon or oncologist what I had read online. Now, I can tell you this, during a rountine visit in late 2008 my surgeon at Sloan Kettering told me she likes to see the number go under 10. When I asked her why, she did say those who did usually have better outcomes. This conversation went unprompted by me. She had brought it up. My number at that time was just above 10. So, early that next year when I had read this study online I thought ah ha, this is why she said that. When I spoke with my oncologist about this she did not agree with the need to be under 10. I also gave examples in my previous post of women who didnt follow suit as evidenced in that study...myself included. But this was why I was desperate to get under 10.
Platinum resistant vs sensitive. This, to my knowledge, is not based on the ca125. My surgeon told me, and what I read is it is based on how long you stay in remission. 6 months or less you are considered to be platinum resistant. Over one year you are considered to be sensitive. The grey area is over 6 months and less then one year, which is where I fall. At my cancer center, if you have a reoccurence within 6 months or less they will not treat you again with platinum medications.
As you mentioned, the ca125 does not reflect the severity of the disease. I hope the post is not going to cause anxiety for people who read it. From my own experience it did not hold true! If we do our own poll, how low did your ca125 go after you initial treatment and how long did you stay in remission? I wonder what the stats would show!0 -
nancy591 said:
ca125
I hope you aren't causing yourself undue anxiety! I googled information in Jan. 2009 so I don't recall where I read this information. The information I read back then was a study done in another country. Sweden maybe. The magic number for this study was 10, not 12. All in all the study said that the women who went under 10 had the longer time of remission then those that did not. The study also talked about how quickly the ca125 fell, ie a 50% drop vs 25% drop after the first treatment. I don't remember the specifics on that.
I never mentioned to my surgeon or oncologist what I had read online. Now, I can tell you this, during a rountine visit in late 2008 my surgeon at Sloan Kettering told me she likes to see the number go under 10. When I asked her why, she did say those who did usually have better outcomes. This conversation went unprompted by me. She had brought it up. My number at that time was just above 10. So, early that next year when I had read this study online I thought ah ha, this is why she said that. When I spoke with my oncologist about this she did not agree with the need to be under 10. I also gave examples in my previous post of women who didnt follow suit as evidenced in that study...myself included. But this was why I was desperate to get under 10.
Platinum resistant vs sensitive. This, to my knowledge, is not based on the ca125. My surgeon told me, and what I read is it is based on how long you stay in remission. 6 months or less you are considered to be platinum resistant. Over one year you are considered to be sensitive. The grey area is over 6 months and less then one year, which is where I fall. At my cancer center, if you have a reoccurence within 6 months or less they will not treat you again with platinum medications.
As you mentioned, the ca125 does not reflect the severity of the disease. I hope the post is not going to cause anxiety for people who read it. From my own experience it did not hold true! If we do our own poll, how low did your ca125 go after you initial treatment and how long did you stay in remission? I wonder what the stats would show!
I just googled ca125 under 10 after chemotherapy. I saw articles and journals that give stats but I'm not going to spend time reading it. The overall prognosis in general is way to scary. Don't going searching it's just depressing. We should all just listen to what our docs say. What choice do we have? Good luck to all!!!!0 -
This comment has been removed by the Moderatornancy591 said:google
I just googled ca125 under 10 after chemotherapy. I saw articles and journals that give stats but I'm not going to spend time reading it. The overall prognosis in general is way to scary. Don't going searching it's just depressing. We should all just listen to what our docs say. What choice do we have? Good luck to all!!!!0 -
You have hit the nail on the head!froggy1 said:So right Linda
. "That's the reason we come here cos we are the only ones that truly understands what each of us are going through, our friends and family really don't know exactly how we feel."
This board is my lifeline. Lately, for some reason, I have been angry. I'm wondering if it is the chemo drugs. I am getting tired of all the "stuff", the dr. visits, the chemo, the labs, the uglies, etc. I also am a caregiver for my 85 year old Mother, who has Alzheimers and is in a nursing home. 'Still trying to be the perfect wife, Mother, etc., which isn't working too well! LOL Yet, I am lucky. I am surviving and can put food on the table.
Those people who say, "You just need to take care of yourself," must have fulltime help!LOL
I don't think anybody really can understand the physical and emotional roller coaster we go through each day, except the great ladies on this board! Luv, Froggy
I have just been reading these posts and it is so nice to be able to come on here and talk to other ladies who know just what I am going through and how I am feeling. It is a lottery I think, so people are able fight and win this disease and other fight just as hard and don't make it. It's not fair
We try to act out our lives just like we did before and make believe everything is going to be OK. Then one day you realise that you have cancer and things are never going tpo be the same ever again. EVERYTHING in my life since diagnosis has changed. I feel like I am living someone else's life because it can't be mine. I used to go to work, I used to be a runner, I used to be 2 dress sizes smaller and I never had a care in the world. I am still a positive person but it is hard to keep that going all the time.
Love to everyone & carry on the fight
Tina xxxxx 0 -
I am so sorryMawty said:Question, Barbara
I have never heard those statistics you wrote here. Where did you find those? My CA-125 never went below 22. My doctor didn't tell me that made a worse prognosis. I'd like to look that up. Thanks.
I'm so sorry about your friend's cancer. I know this is so frustrating when it comes back. I know it has been for me too.
Marty
I feel that I owe everyone an apology for putting out fragmented information that is nothing but that. The big problem with the CA125 for most of us is that we don’t know what our “normal baseline” is, because by the time we have our first test there is already something going on. Lisa’s normal baseline is 45, someone else’s may be 22. We also look only at the low numbers, when it’s possible that changes in the high numbers are meaningful as well.
We caregivers have to stand back from the battle a bit and keep our eye on what’s most likely to happen so we can be there when we’re needed. Instead of “how can I fight and win today?” we ask “what’s most likely to happen and how can I make it better?” Things have been quite frustrating lately and mom is not doing well. I’m afraid I let my anger leak toxic drops into places where it should never be, like this forum. Again, I apologize.0 -
FroggyTina Brown said:You have hit the nail on the head!
I have just been reading these posts and it is so nice to be able to come on here and talk to other ladies who know just what I am going through and how I am feeling. It is a lottery I think, so people are able fight and win this disease and other fight just as hard and don't make it. It's not fair
We try to act out our lives just like we did before and make believe everything is going to be OK. Then one day you realise that you have cancer and things are never going tpo be the same ever again. EVERYTHING in my life since diagnosis has changed. I feel like I am living someone else's life because it can't be mine. I used to go to work, I used to be a runner, I used to be 2 dress sizes smaller and I never had a care in the world. I am still a positive person but it is hard to keep that going all the time.
Love to everyone & carry on the fight Tina xxxxx
yes I know the anger you feel. I feel the same way lately too. Going through chemo and just being so dang tired all the time. For example, I went out lastnight to look for my Meghan and I feel down on the sidewalk, just walking, my legs are so week from laying down all the time and plus this 10 lbs bag that pumps in the antibiotic over my shoulder, it's all just too much for me. So here I take a wipe out and you think that anyone rushed to my aide? NOPE, they all walked by me like I wasn't even there. I scraped my elbow and my knee and hurt my ego, other than that I'm fine, but I was angry as heck when that happened. I can't believe that you take care of everyone the way you do, that's amazing, I'm in the same spot except thank God I don't have a useless man to wait on.
Tina, I know how you feel too, I too feel like I am watching someone else's life, this can't be me. I find myself drifting off to the times before my diagnosis and wonder why I couldn't be happy then. Dress sizes? Don't worry about that, I did, now I'm so darn skinny that I would give anything to put some weight back on me. Trust me when I tell you, you'll regret wishing you were slim again. Love you gals tons. You know I do.
Linda0
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