CEA NUMBERS

13

Comments

  • bruins1971
    bruins1971 Member Posts: 227

    First off
    Bobby, good luck I hope your numbers stay low and you can finally see the end of this. Secondly, I'm just curious about all this myself. If you have the surgery and your cancer seems to be gone should you still be getting your CEA tested and any scans done? My surgery was in June, my last CEA testing was in Aug and my Oncologist says I don't need anymore more done at all and has completly released me...I worry if this is right and if I should be having more done than just a yearly colonoscopy.
    (sorry Bobby, didn't mean to highjack your thread).

    CEA test
    I think that he feels at this point based upon the petscan back in April where it only showed the cancer to be two tumors in the liver that were removed in August that I should be cancer free. Maybe this is why I don't have my CEA number checked as often. When I started my CEA was only 26 this with two tumors in my liver one the size of a baseball and the other was half that size. My last CEA check was in Sept and it was down to normal range at 1.8 God willing it will stay that way. As for the CT scans maybe he is holding off due to how many I have had this year. I promise you I have had at least 15 done due to complications from my colon surgery where I almost died from an infection after I started leaking from the surgery site. It leaked all that junk from inside my colon to my abdominal area and I ended up in the CCU for two weeks. Then I had liver surgery in August and again had CT scans up the wazoo due to drainage issues and them collapsing my lung during surgery. So needless to say I am looking forward to getting this treatment done so I can have a nice break...Hopefully a break of about 50 years or so...

    Bobby
  • CherylHutch
    CherylHutch Member Posts: 1,375

    CEA test
    I think that he feels at this point based upon the petscan back in April where it only showed the cancer to be two tumors in the liver that were removed in August that I should be cancer free. Maybe this is why I don't have my CEA number checked as often. When I started my CEA was only 26 this with two tumors in my liver one the size of a baseball and the other was half that size. My last CEA check was in Sept and it was down to normal range at 1.8 God willing it will stay that way. As for the CT scans maybe he is holding off due to how many I have had this year. I promise you I have had at least 15 done due to complications from my colon surgery where I almost died from an infection after I started leaking from the surgery site. It leaked all that junk from inside my colon to my abdominal area and I ended up in the CCU for two weeks. Then I had liver surgery in August and again had CT scans up the wazoo due to drainage issues and them collapsing my lung during surgery. So needless to say I am looking forward to getting this treatment done so I can have a nice break...Hopefully a break of about 50 years or so...

    Bobby

    CEA and Stage IV
    Hi Bobby,

    I'm a little confused here after reading through all the comments. This last comment of yours, you say that in April, you had two tumors in the liver that were removed in August. I'm assuming that earlier in the year, you had your colon surgery to remove a tumor(s) from the colon and that's when you had complications to the colon surgery. So, am I right in assuming you were diagnosed with colon cancer, had the colon surgery and then found that the cancer had spread to your liver (2 tumours) which you had surgery to the liver in Aug. After the surgery in August, you were on a treatment of chemo... which is going to end this January.

    Ok... here's where I'm confused. If your colon cancer has spread to your liver, then you would be considered Colon Cancer Stage IV. Stage IV is incurable, although as many of us have proved here, it can be treatable (unfortunately, some don't survive so theirs does not respond to the treatment, or the cancer ends up being more aggressive and the treatments don't work on it). But for a lot of us, we are "Living With Cancer" vs "Dying From Cancer". The only way one can live with cancer is if they are being monitored and treated. And yes, there can be breaks from treatment. When the cancer responds to treatment and either disappears from medical radar, or one has surgery and all visible cancer tumours are removed. Then, one can breath a little easier because you get a break from treatment. All the technology we have can only detect cancer when it becomes a certain size... so when someone is Stage IV, the cancer has never left their systems... it's just too small to detect. There's no point throwing chemo at it when it's that small because it's too small to respond to chemo... and the last thing you want is for your system to become immune to chemo. Save it for when you need it.

    It sounds like your oncologist/surgeons have removed all signs of cancer... and then gave you a regime of chemo to mop up any cancer cells that might think of hanging around and becoming active. That's great. But how do you know there is no active cancer starting up unless you are monitored, which would include regular scans and blood work (especially CEA testing)? As the others have said, CEA is not necessarily a good indicator for all... on the other hand, if it is, then it's a great diagnostic tool. No decisions are made based on CEA alone, but if the trend is your CEA is going up, then it's a good trigger for your oncologist to order more tests and scans. But if he/she says you don't need a CEA test or scan anymore because he/she feels you are cancer free... well, there's something terribly wrong with this picture. If you are cancer free and the oncologist thinks you have been since August, then why does he/she have you on chemo? Someone who is cancer-free or in remission, does not need chemo... and one certainly doesn't want to put chemo in your body unnecessarily because you want it to work when you actually need it.

    So yes, I'm glad you are going to get a CEA test next week (and all the other blood workup) but ask your oncologist if he thinks you are cancer free, then why you had to be on the chemo? Also, ask him to clarify... if you are Stage IV, then your cancer has gone systemic, so how can he say someone is every cancer free if they are diagnosed as Stage IV? I'd be really curious as to what his answer is to that question.

    Cheryl
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member

    CEA and Stage IV
    Hi Bobby,

    I'm a little confused here after reading through all the comments. This last comment of yours, you say that in April, you had two tumors in the liver that were removed in August. I'm assuming that earlier in the year, you had your colon surgery to remove a tumor(s) from the colon and that's when you had complications to the colon surgery. So, am I right in assuming you were diagnosed with colon cancer, had the colon surgery and then found that the cancer had spread to your liver (2 tumours) which you had surgery to the liver in Aug. After the surgery in August, you were on a treatment of chemo... which is going to end this January.

    Ok... here's where I'm confused. If your colon cancer has spread to your liver, then you would be considered Colon Cancer Stage IV. Stage IV is incurable, although as many of us have proved here, it can be treatable (unfortunately, some don't survive so theirs does not respond to the treatment, or the cancer ends up being more aggressive and the treatments don't work on it). But for a lot of us, we are "Living With Cancer" vs "Dying From Cancer". The only way one can live with cancer is if they are being monitored and treated. And yes, there can be breaks from treatment. When the cancer responds to treatment and either disappears from medical radar, or one has surgery and all visible cancer tumours are removed. Then, one can breath a little easier because you get a break from treatment. All the technology we have can only detect cancer when it becomes a certain size... so when someone is Stage IV, the cancer has never left their systems... it's just too small to detect. There's no point throwing chemo at it when it's that small because it's too small to respond to chemo... and the last thing you want is for your system to become immune to chemo. Save it for when you need it.

    It sounds like your oncologist/surgeons have removed all signs of cancer... and then gave you a regime of chemo to mop up any cancer cells that might think of hanging around and becoming active. That's great. But how do you know there is no active cancer starting up unless you are monitored, which would include regular scans and blood work (especially CEA testing)? As the others have said, CEA is not necessarily a good indicator for all... on the other hand, if it is, then it's a great diagnostic tool. No decisions are made based on CEA alone, but if the trend is your CEA is going up, then it's a good trigger for your oncologist to order more tests and scans. But if he/she says you don't need a CEA test or scan anymore because he/she feels you are cancer free... well, there's something terribly wrong with this picture. If you are cancer free and the oncologist thinks you have been since August, then why does he/she have you on chemo? Someone who is cancer-free or in remission, does not need chemo... and one certainly doesn't want to put chemo in your body unnecessarily because you want it to work when you actually need it.

    So yes, I'm glad you are going to get a CEA test next week (and all the other blood workup) but ask your oncologist if he thinks you are cancer free, then why you had to be on the chemo? Also, ask him to clarify... if you are Stage IV, then your cancer has gone systemic, so how can he say someone is every cancer free if they are diagnosed as Stage IV? I'd be really curious as to what his answer is to that question.

    Cheryl

    Everything
    Cheryl said I second.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member

    CEA and Stage IV
    Hi Bobby,

    I'm a little confused here after reading through all the comments. This last comment of yours, you say that in April, you had two tumors in the liver that were removed in August. I'm assuming that earlier in the year, you had your colon surgery to remove a tumor(s) from the colon and that's when you had complications to the colon surgery. So, am I right in assuming you were diagnosed with colon cancer, had the colon surgery and then found that the cancer had spread to your liver (2 tumours) which you had surgery to the liver in Aug. After the surgery in August, you were on a treatment of chemo... which is going to end this January.

    Ok... here's where I'm confused. If your colon cancer has spread to your liver, then you would be considered Colon Cancer Stage IV. Stage IV is incurable, although as many of us have proved here, it can be treatable (unfortunately, some don't survive so theirs does not respond to the treatment, or the cancer ends up being more aggressive and the treatments don't work on it). But for a lot of us, we are "Living With Cancer" vs "Dying From Cancer". The only way one can live with cancer is if they are being monitored and treated. And yes, there can be breaks from treatment. When the cancer responds to treatment and either disappears from medical radar, or one has surgery and all visible cancer tumours are removed. Then, one can breath a little easier because you get a break from treatment. All the technology we have can only detect cancer when it becomes a certain size... so when someone is Stage IV, the cancer has never left their systems... it's just too small to detect. There's no point throwing chemo at it when it's that small because it's too small to respond to chemo... and the last thing you want is for your system to become immune to chemo. Save it for when you need it.

    It sounds like your oncologist/surgeons have removed all signs of cancer... and then gave you a regime of chemo to mop up any cancer cells that might think of hanging around and becoming active. That's great. But how do you know there is no active cancer starting up unless you are monitored, which would include regular scans and blood work (especially CEA testing)? As the others have said, CEA is not necessarily a good indicator for all... on the other hand, if it is, then it's a great diagnostic tool. No decisions are made based on CEA alone, but if the trend is your CEA is going up, then it's a good trigger for your oncologist to order more tests and scans. But if he/she says you don't need a CEA test or scan anymore because he/she feels you are cancer free... well, there's something terribly wrong with this picture. If you are cancer free and the oncologist thinks you have been since August, then why does he/she have you on chemo? Someone who is cancer-free or in remission, does not need chemo... and one certainly doesn't want to put chemo in your body unnecessarily because you want it to work when you actually need it.

    So yes, I'm glad you are going to get a CEA test next week (and all the other blood workup) but ask your oncologist if he thinks you are cancer free, then why you had to be on the chemo? Also, ask him to clarify... if you are Stage IV, then your cancer has gone systemic, so how can he say someone is every cancer free if they are diagnosed as Stage IV? I'd be really curious as to what his answer is to that question.

    Cheryl

    Double post...

    Double post...
  • bruins1971
    bruins1971 Member Posts: 227

    CEA and Stage IV
    Hi Bobby,

    I'm a little confused here after reading through all the comments. This last comment of yours, you say that in April, you had two tumors in the liver that were removed in August. I'm assuming that earlier in the year, you had your colon surgery to remove a tumor(s) from the colon and that's when you had complications to the colon surgery. So, am I right in assuming you were diagnosed with colon cancer, had the colon surgery and then found that the cancer had spread to your liver (2 tumours) which you had surgery to the liver in Aug. After the surgery in August, you were on a treatment of chemo... which is going to end this January.

    Ok... here's where I'm confused. If your colon cancer has spread to your liver, then you would be considered Colon Cancer Stage IV. Stage IV is incurable, although as many of us have proved here, it can be treatable (unfortunately, some don't survive so theirs does not respond to the treatment, or the cancer ends up being more aggressive and the treatments don't work on it). But for a lot of us, we are "Living With Cancer" vs "Dying From Cancer". The only way one can live with cancer is if they are being monitored and treated. And yes, there can be breaks from treatment. When the cancer responds to treatment and either disappears from medical radar, or one has surgery and all visible cancer tumours are removed. Then, one can breath a little easier because you get a break from treatment. All the technology we have can only detect cancer when it becomes a certain size... so when someone is Stage IV, the cancer has never left their systems... it's just too small to detect. There's no point throwing chemo at it when it's that small because it's too small to respond to chemo... and the last thing you want is for your system to become immune to chemo. Save it for when you need it.

    It sounds like your oncologist/surgeons have removed all signs of cancer... and then gave you a regime of chemo to mop up any cancer cells that might think of hanging around and becoming active. That's great. But how do you know there is no active cancer starting up unless you are monitored, which would include regular scans and blood work (especially CEA testing)? As the others have said, CEA is not necessarily a good indicator for all... on the other hand, if it is, then it's a great diagnostic tool. No decisions are made based on CEA alone, but if the trend is your CEA is going up, then it's a good trigger for your oncologist to order more tests and scans. But if he/she says you don't need a CEA test or scan anymore because he/she feels you are cancer free... well, there's something terribly wrong with this picture. If you are cancer free and the oncologist thinks you have been since August, then why does he/she have you on chemo? Someone who is cancer-free or in remission, does not need chemo... and one certainly doesn't want to put chemo in your body unnecessarily because you want it to work when you actually need it.

    So yes, I'm glad you are going to get a CEA test next week (and all the other blood workup) but ask your oncologist if he thinks you are cancer free, then why you had to be on the chemo? Also, ask him to clarify... if you are Stage IV, then your cancer has gone systemic, so how can he say someone is every cancer free if they are diagnosed as Stage IV? I'd be really curious as to what his answer is to that question.

    Cheryl

    Clarification
    Cheryl let me clarify my situation so as to not have confusion. I was DX with stage 4 colon cancer in late Feb of this year after a colonoscopy found a golf ball sized tumor. A CT performed before colon surgery showed something in the liver so during the colon surgery a liver surgery was in the room and looked at my liver with ultrasound and found 2 tumors in the liver one the size of a baseball the other a little less than half that size. After removing the tumor and about a foot of my colon I then had 5 rounds of chemo to shrink my tumors in the liver. My CEA number before chemo started was at 26 and the number was 1.8 after the liver resection in August. At last check in late September it was still at 1.8 although after reading all these post I have decided that I will make him test the CEA when I go in for Chemo next Tuesday which will be round 11 of 12 for this is my treatment plan as set up before the first surgery.

    As for why I am getting chemo now if I no longer have any visible tumors in my body. I guess it's just what you said to go after the cancer cells that are to small to show up on scans. When I asked my doctor when I would be cancer free he stated that he feels I should be cancer free at this point after all the surgeries and treatments but that I am not cured of cancer and would only be seen as cured if I go five years of clean scans then and only then could I say I am cured. Right now I guess you could say I am cancer free to the point that I don't have any tumors. Well I will only know this after I have my scan next month after chemo is done. Has anyone had scans while in the middle of treatment just to see how things looked? He never said I would not need CEA tests or scans in the future he stated the opposite. He said if the scan comes back clear in Jan then I will have another one three months later.

    I am like you and many others I don't look at myself as dying from cancer. I look at it as I am living with cancer until I am clean of this cancer. Stage 4 is no longer an automatic death sentence. I have a friend who was DX stage 4 in 2006 and has been clean since 2007 not saying it could not return but he has had three great years of living with cancer. That is something we will all have to do and that is live with cancer at least for until you reach the five year mark of being clean. What seems impossible to man is possible with God and that is how I make it through every day knowing that all it will take is God touching me and the cancer will be gone forever. My faith is strong and will see me through this battle and one way or the other I will win. I will either be cured and live with my family or I will be called home to live in Heaven and although I prefer to stay here with my family for many, many more years I don't have control of that so I just smile and enjoy ever single day given to me.

    Bobby
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    CEA
    Hi Bobby, I'm currently in treatment for stage IV colon cancer. I get my CEA checked every 4 weeks on average. I get regular blood work done every time I go for chemo. Thankfully my blood work has always been great and I've never had chemo withheld due to that. I also have CT scans every 8 weeks. I am a little (actually VERY) surprised that your Onc does not test your CEA more frequently. While it certainly is not the end all of tests to determine if cancer is on the move, it does have it's value and should be watched. It can signal that something is possibly wrong.
    I have to tell you that I agree with many of the opinions here and that I would insist on him testing your CEA and I would also insist on a CT scan.
    All the best to you, I hope the tests confirm what your Onc feels...
    -phil
  • scouty
    scouty Member Posts: 1,965 Member

    CEA and Stage IV
    Hi Bobby,

    I'm a little confused here after reading through all the comments. This last comment of yours, you say that in April, you had two tumors in the liver that were removed in August. I'm assuming that earlier in the year, you had your colon surgery to remove a tumor(s) from the colon and that's when you had complications to the colon surgery. So, am I right in assuming you were diagnosed with colon cancer, had the colon surgery and then found that the cancer had spread to your liver (2 tumours) which you had surgery to the liver in Aug. After the surgery in August, you were on a treatment of chemo... which is going to end this January.

    Ok... here's where I'm confused. If your colon cancer has spread to your liver, then you would be considered Colon Cancer Stage IV. Stage IV is incurable, although as many of us have proved here, it can be treatable (unfortunately, some don't survive so theirs does not respond to the treatment, or the cancer ends up being more aggressive and the treatments don't work on it). But for a lot of us, we are "Living With Cancer" vs "Dying From Cancer". The only way one can live with cancer is if they are being monitored and treated. And yes, there can be breaks from treatment. When the cancer responds to treatment and either disappears from medical radar, or one has surgery and all visible cancer tumours are removed. Then, one can breath a little easier because you get a break from treatment. All the technology we have can only detect cancer when it becomes a certain size... so when someone is Stage IV, the cancer has never left their systems... it's just too small to detect. There's no point throwing chemo at it when it's that small because it's too small to respond to chemo... and the last thing you want is for your system to become immune to chemo. Save it for when you need it.

    It sounds like your oncologist/surgeons have removed all signs of cancer... and then gave you a regime of chemo to mop up any cancer cells that might think of hanging around and becoming active. That's great. But how do you know there is no active cancer starting up unless you are monitored, which would include regular scans and blood work (especially CEA testing)? As the others have said, CEA is not necessarily a good indicator for all... on the other hand, if it is, then it's a great diagnostic tool. No decisions are made based on CEA alone, but if the trend is your CEA is going up, then it's a good trigger for your oncologist to order more tests and scans. But if he/she says you don't need a CEA test or scan anymore because he/she feels you are cancer free... well, there's something terribly wrong with this picture. If you are cancer free and the oncologist thinks you have been since August, then why does he/she have you on chemo? Someone who is cancer-free or in remission, does not need chemo... and one certainly doesn't want to put chemo in your body unnecessarily because you want it to work when you actually need it.

    So yes, I'm glad you are going to get a CEA test next week (and all the other blood workup) but ask your oncologist if he thinks you are cancer free, then why you had to be on the chemo? Also, ask him to clarify... if you are Stage IV, then your cancer has gone systemic, so how can he say someone is every cancer free if they are diagnosed as Stage IV? I'd be really curious as to what his answer is to that question.

    Cheryl

    What are your definitions of incurable and cure?
    I was stage IV with mets to my liver and left lung and have been NED for 6 years now. So with no cancer cells in my body for that long how can I still have it? My oncologist considers me cured, why don't you?

    Lisa P.

    PS. Good to see you around and have a great holiday season!
  • bruins1971
    bruins1971 Member Posts: 227
    scouty said:

    What are your definitions of incurable and cure?
    I was stage IV with mets to my liver and left lung and have been NED for 6 years now. So with no cancer cells in my body for that long how can I still have it? My oncologist considers me cured, why don't you?

    Lisa P.

    PS. Good to see you around and have a great holiday season!

    Amen
    Lisa that is such an awesome thing for you to be NED for that long and yes my friend you are CURED now scream it from the mountain tops and let the world know it can be done.

    Bobby
  • Lori-S
    Lori-S Member Posts: 1,277 Member

    Clarification
    Cheryl let me clarify my situation so as to not have confusion. I was DX with stage 4 colon cancer in late Feb of this year after a colonoscopy found a golf ball sized tumor. A CT performed before colon surgery showed something in the liver so during the colon surgery a liver surgery was in the room and looked at my liver with ultrasound and found 2 tumors in the liver one the size of a baseball the other a little less than half that size. After removing the tumor and about a foot of my colon I then had 5 rounds of chemo to shrink my tumors in the liver. My CEA number before chemo started was at 26 and the number was 1.8 after the liver resection in August. At last check in late September it was still at 1.8 although after reading all these post I have decided that I will make him test the CEA when I go in for Chemo next Tuesday which will be round 11 of 12 for this is my treatment plan as set up before the first surgery.

    As for why I am getting chemo now if I no longer have any visible tumors in my body. I guess it's just what you said to go after the cancer cells that are to small to show up on scans. When I asked my doctor when I would be cancer free he stated that he feels I should be cancer free at this point after all the surgeries and treatments but that I am not cured of cancer and would only be seen as cured if I go five years of clean scans then and only then could I say I am cured. Right now I guess you could say I am cancer free to the point that I don't have any tumors. Well I will only know this after I have my scan next month after chemo is done. Has anyone had scans while in the middle of treatment just to see how things looked? He never said I would not need CEA tests or scans in the future he stated the opposite. He said if the scan comes back clear in Jan then I will have another one three months later.

    I am like you and many others I don't look at myself as dying from cancer. I look at it as I am living with cancer until I am clean of this cancer. Stage 4 is no longer an automatic death sentence. I have a friend who was DX stage 4 in 2006 and has been clean since 2007 not saying it could not return but he has had three great years of living with cancer. That is something we will all have to do and that is live with cancer at least for until you reach the five year mark of being clean. What seems impossible to man is possible with God and that is how I make it through every day knowing that all it will take is God touching me and the cancer will be gone forever. My faith is strong and will see me through this battle and one way or the other I will win. I will either be cured and live with my family or I will be called home to live in Heaven and although I prefer to stay here with my family for many, many more years I don't have control of that so I just smile and enjoy ever single day given to me.

    Bobby

    Also Bobby
    Remember that we are all at different stages of treatment and that will help decide when the onc wants a CEA. For example say mine hadn't been rising steadily since surgery, then I'm pretty sure that my onc would only draw it once a month instead of before each chemo. We're waiting and hoping that a draw will show a downward trend so we can make the assumption that the FOLFOX is working.
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    PhillieG said:

    CEA
    Hi Bobby, I'm currently in treatment for stage IV colon cancer. I get my CEA checked every 4 weeks on average. I get regular blood work done every time I go for chemo. Thankfully my blood work has always been great and I've never had chemo withheld due to that. I also have CT scans every 8 weeks. I am a little (actually VERY) surprised that your Onc does not test your CEA more frequently. While it certainly is not the end all of tests to determine if cancer is on the move, it does have it's value and should be watched. It can signal that something is possibly wrong.
    I have to tell you that I agree with many of the opinions here and that I would insist on him testing your CEA and I would also insist on a CT scan.
    All the best to you, I hope the tests confirm what your Onc feels...
    -phil

    Mine gets done very 2 weeks
    Mine gets done very 2 weeks (with bloodwork before chemo) been great, 1.9 last time 2.5 time before that. Guess no need to be concerned unless in double digits.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    scouty said:

    What are your definitions of incurable and cure?
    I was stage IV with mets to my liver and left lung and have been NED for 6 years now. So with no cancer cells in my body for that long how can I still have it? My oncologist considers me cured, why don't you?

    Lisa P.

    PS. Good to see you around and have a great holiday season!

    Cure
    A cure is something that is repeatable. I am happy that you have been NED for as long as you have, but it would probably be more grammatically correct to say you have recovered.

    As I type this, there are 40 members online, since there are four stages it is probably fair to say that 10 of those 40 are stage IV. Statistically, one, maybe two of those will be around 5 years from now. If we were talking cure, then the implication is that the two who survived did something right in their treatment, while the 8 who did not failed.

    The fact is that all 10 followed similar protocols, but a very small percentage does really well, a percentage does fairly well, and for some the treatment just fails.

    Speaking of this as a manageable disease is the most accurate. Even if I survive this, I will never refer to myself as cured, as that is grossly unfair to those who joined me in this journey but never reached the finish.
  • bruins1971
    bruins1971 Member Posts: 227
    Buckwirth said:

    Cure
    A cure is something that is repeatable. I am happy that you have been NED for as long as you have, but it would probably be more grammatically correct to say you have recovered.

    As I type this, there are 40 members online, since there are four stages it is probably fair to say that 10 of those 40 are stage IV. Statistically, one, maybe two of those will be around 5 years from now. If we were talking cure, then the implication is that the two who survived did something right in their treatment, while the 8 who did not failed.

    The fact is that all 10 followed similar protocols, but a very small percentage does really well, a percentage does fairly well, and for some the treatment just fails.

    Speaking of this as a manageable disease is the most accurate. Even if I survive this, I will never refer to myself as cured, as that is grossly unfair to those who joined me in this journey but never reached the finish.

    I'm not NED
    Good Lord I can only pray that day comes very soon. I'm still in treatment with chemo but only two more rounds left and I guess I'll except the doctor saying I'm NED once the latest scan shows me to be clear. It's so crazy how some people react better than others to the chemo or is it something else out there that effects things? I pray every night for everyone on this board that they find a cure before one more of us passes on. Stage 4 may be viewed as terminal by most but there are people that beat it all together I can only pray that we are amount the many that are still around five, ten even 25 years from now.

    Bobby
  • Lori-S
    Lori-S Member Posts: 1,277 Member

    I'm not NED
    Good Lord I can only pray that day comes very soon. I'm still in treatment with chemo but only two more rounds left and I guess I'll except the doctor saying I'm NED once the latest scan shows me to be clear. It's so crazy how some people react better than others to the chemo or is it something else out there that effects things? I pray every night for everyone on this board that they find a cure before one more of us passes on. Stage 4 may be viewed as terminal by most but there are people that beat it all together I can only pray that we are amount the many that are still around five, ten even 25 years from now.

    Bobby

    Bobby
    Whether you believe in the statistics or not. There are people who beat it and people who don't. The statistics prove that. Why they beat it and others don't is the puzzling question. It seems so many different approaches and schools of thoughts and still .... about the same number make it out alive. And it doesn't matter the treatments, the attitude, the age, the pre-cancer health or the belief system. That's what makes it so puzzling. I guess if I'm suppose to beat it I will and if not then I won't but, I'll do my best to be in that positive outcome percentage. And that's what each of us are trying to do here. And we're trying to do it together. Isn't that great!
  • sharpy102
    sharpy102 Member Posts: 368 Member
    Buckwirth said:

    Cure
    A cure is something that is repeatable. I am happy that you have been NED for as long as you have, but it would probably be more grammatically correct to say you have recovered.

    As I type this, there are 40 members online, since there are four stages it is probably fair to say that 10 of those 40 are stage IV. Statistically, one, maybe two of those will be around 5 years from now. If we were talking cure, then the implication is that the two who survived did something right in their treatment, while the 8 who did not failed.

    The fact is that all 10 followed similar protocols, but a very small percentage does really well, a percentage does fairly well, and for some the treatment just fails.

    Speaking of this as a manageable disease is the most accurate. Even if I survive this, I will never refer to myself as cured, as that is grossly unfair to those who joined me in this journey but never reached the finish.

    thanks
    @Buckwirth: thanks for your last 2 sentences...you are nice! Really!
    @Bobby: I am no close to being an expert, but I am just taking a class on cancer and just a side note: even one type of cancer (colon cancer in this thread) can have different mutations in different components (or even multiple) that regulate cell cycle, and DNA damage check, and arrest cell cycle and send those cells into apoptosis (programmed cell death), so that's why CEA checks are so different in different patients, and that's why people "react" differently to the chemo drugs. There's only a few chemo drugs that target certain components of colon cancer cell lines that are the "typical" or maybe not even typical, but the one that was shown to be responsible for cancer cell proliferation/invasion and if a patient has only that one mutation than the treatment will be very effective, but if the patient has more than one mutation in more than one steps of the cell cycle regulation/DNA damage checkpoint etc. then these treatments will be not as effective, or not effective at all. You really cannot compare how other people react to a treatment, or how often they get their CEA checked etc. It is insanely complex, and most times there's so many mutations in these cells, that you can partially slow the cancer cells down, but cannot cure. Sounds bad, but that's how it is. And another reason why people get the cancer back after being NED for certain periods of times. When patients get a certain chemo drug, it might be really effective, but even in "officially claimed healthy individual" has microscopic cancers (me too) that are proliferating faster than the healthy cells, but are "under control" by our machinery. When somebody is "cured", those microscopic cancer cells can accumulate new mutations as they already prone to being malignant cancer cells, and when they "show up" again as cancer cells (when diagnosed again) generally the treatment the patient had earlier is no longer effective as these cells are different than the "original" was. I hope this makes sense...I don't want to bring anyone down, just thought I'd let you guys know why cancer is so complex! It is very interesting though, and if you guys believe in me, in a couple of years I'll be finishing high school and will go into university and do cancer research!!! :) I will kill those bastards!! Yes!!!
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    sharpy102 said:

    thanks
    @Buckwirth: thanks for your last 2 sentences...you are nice! Really!
    @Bobby: I am no close to being an expert, but I am just taking a class on cancer and just a side note: even one type of cancer (colon cancer in this thread) can have different mutations in different components (or even multiple) that regulate cell cycle, and DNA damage check, and arrest cell cycle and send those cells into apoptosis (programmed cell death), so that's why CEA checks are so different in different patients, and that's why people "react" differently to the chemo drugs. There's only a few chemo drugs that target certain components of colon cancer cell lines that are the "typical" or maybe not even typical, but the one that was shown to be responsible for cancer cell proliferation/invasion and if a patient has only that one mutation than the treatment will be very effective, but if the patient has more than one mutation in more than one steps of the cell cycle regulation/DNA damage checkpoint etc. then these treatments will be not as effective, or not effective at all. You really cannot compare how other people react to a treatment, or how often they get their CEA checked etc. It is insanely complex, and most times there's so many mutations in these cells, that you can partially slow the cancer cells down, but cannot cure. Sounds bad, but that's how it is. And another reason why people get the cancer back after being NED for certain periods of times. When patients get a certain chemo drug, it might be really effective, but even in "officially claimed healthy individual" has microscopic cancers (me too) that are proliferating faster than the healthy cells, but are "under control" by our machinery. When somebody is "cured", those microscopic cancer cells can accumulate new mutations as they already prone to being malignant cancer cells, and when they "show up" again as cancer cells (when diagnosed again) generally the treatment the patient had earlier is no longer effective as these cells are different than the "original" was. I hope this makes sense...I don't want to bring anyone down, just thought I'd let you guys know why cancer is so complex! It is very interesting though, and if you guys believe in me, in a couple of years I'll be finishing high school and will go into university and do cancer research!!! :) I will kill those bastards!! Yes!!!

    Go get them Sophie!
    I am wishing you all the best with your studies. I am so proud of you. On my expressions page I have a picture/study of the molecular mechanism of the cancer pathway. Being just one component that shows how complex cancer is.
  • Nana b
    Nana b Member Posts: 3,030 Member
    Kenny H. said:

    Mine gets done very 2 weeks
    Mine gets done very 2 weeks (with bloodwork before chemo) been great, 1.9 last time 2.5 time before that. Guess no need to be concerned unless in double digits.

    At first every other week,
    At first every other week, but now i am on 3 month CEA check and yearly colonoscopies and pet/scan.
  • sharpy102
    sharpy102 Member Posts: 368 Member
    Lori-S said:

    Go get them Sophie!
    I am wishing you all the best with your studies. I am so proud of you. On my expressions page I have a picture/study of the molecular mechanism of the cancer pathway. Being just one component that shows how complex cancer is.

    nice
    Hey Lori,

    Nice picture of the pathway...I had to check it out!!! Ok, if you look there again, colorectal cancer ua. have mutations in the following: PTEN (which would inhibit PI3K), PI3K itself (a kinase), p53 (tumor suppressor), AKT (blocks apoptosis), K-Ras (another kinase). Just so you get a picture which pathway is usually "hurt" by the most in cancer cells...I'll work on this, for sure!!! If I cannot get into this field then my life doesn't have any meaning!!! I'm serious about it!! Thanks for the smiley again, and for encouraging me...peeps think I'm crazy at the school as no other soon to be 14 year old is determined about their future as much as I am. LOL But I am!!!! DAMMIT! ;)
  • scouty
    scouty Member Posts: 1,965 Member
    sharpy102 said:

    nice
    Hey Lori,

    Nice picture of the pathway...I had to check it out!!! Ok, if you look there again, colorectal cancer ua. have mutations in the following: PTEN (which would inhibit PI3K), PI3K itself (a kinase), p53 (tumor suppressor), AKT (blocks apoptosis), K-Ras (another kinase). Just so you get a picture which pathway is usually "hurt" by the most in cancer cells...I'll work on this, for sure!!! If I cannot get into this field then my life doesn't have any meaning!!! I'm serious about it!! Thanks for the smiley again, and for encouraging me...peeps think I'm crazy at the school as no other soon to be 14 year old is determined about their future as much as I am. LOL But I am!!!! DAMMIT! ;)

    Dang
    Never had a 13 year old hero before but I do now. You go girl!!! Have you read about the high school girl from Texas that just won the Internation Science Fair competition? Her project was on using light to kill hard to reach cancer cells and apparently there are now some researchers and companies working with her on her idea. Sounds like you'll be in her shoes in now time.

    Make up proud Sophie and thank you in advance!
    Lisa P.
  • PGLGreg
    PGLGreg Member Posts: 731
    every 3 months
    After stage 2a rectal cancer 5 years ago with no recurrences, I've gotten CEA (and other blood tests) every 3 months. Also, I've had yearly CT scans and several colonoscopies.

    Here are some recent CEA scores (for whatever interest it may have):
    07/07 1.2
    01/08 0.7
    03/08 0.7
    06/08 1.2
    09/08 0.4
    01/09 <0.4
    06/09 1.2
    09/09 1.2
    12/09 1.3
    03/10 1.1
    06/10 1.2
    09/10 1.3
    12/10 1.3

    --Greg
  • bruins1971
    bruins1971 Member Posts: 227
    PGLGreg said:

    every 3 months
    After stage 2a rectal cancer 5 years ago with no recurrences, I've gotten CEA (and other blood tests) every 3 months. Also, I've had yearly CT scans and several colonoscopies.

    Here are some recent CEA scores (for whatever interest it may have):
    07/07 1.2
    01/08 0.7
    03/08 0.7
    06/08 1.2
    09/08 0.4
    01/09 <0.4
    06/09 1.2
    09/09 1.2
    12/09 1.3
    03/10 1.1
    06/10 1.2
    09/10 1.3
    12/10 1.3

    --Greg</p>

    Great News
    Those are great numbers Greg and I hope they stay that way forever.