going up again

2

Comments

  • Brenda3.16
    Brenda3.16 Member Posts: 209
    #22
    Sundanceh said:

    Lisa:)
    I agree with the group, Lisa...

    I'll be anxiously watching this chess match and waiting on your next move with great anticipation:)

    -Craig

    Lisa
    Just wanted to let you
    Lisa
    Just wanted to let you know that I am thinking about you. I hope the CEA gets knocked right back down. Love, Brenda
  • scouty
    scouty Member Posts: 1,965 Member
    #23
    lisa42 said:

    Thanks
    Great CEA explanation Lori!
    Thanks to everyone who replied- hugs to you all!!
    I was in the oncology office this afternoon for a neulasta shot & had hoped to flag down my oncologist- no luck. I guess I'll email him- I think I'll get a faster response that way. I also emailed my colorectal surgeon today, but no answer yet.

    Email him for sure
    My onc. has a kind of dry personality and I think he prefers email and is always quick to respond/react.

    I'm thinking about you over there on the left side "other Lisa"!

    Lisa P.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #24
    Brenda3.16 said:

    Lisa
    Just wanted to let you
    Lisa
    Just wanted to let you know that I am thinking about you. I hope the CEA gets knocked right back down. Love, Brenda

    Me too
    I'm thinking of you too Lisa and having observed you for the past year I know that you are a very intelligent woman and will figure all this out....what to do and when to do it stuff. You have my support and good wishes along with, I suspect hundreds of other CSN members.

    Hang in there and I will be looking for your updates.

    -Pat
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #25
    the plan
    Well, I heard back more quickly than I thought I would from the email I sent my onc this afternoon. He said that with the CEA rose when I went off the chemo, so he thinks the bigger cause of that is my lung nodules. He wants to continue the current chemo with Avastin for maybe even a few months before doing the transanal exision to get any growth there under control first. He said he suspects Dr. Ramamoorthy (the colorectal surgeon) will agree that it's not an emergency and will be okay with waiting (as long as it doesn't grow larger or cause me any worse symptoms in the meantime). We'll monitor that & I'm supposed to let the onc know right away if anything there changes.
    So, I guess that's the plan.
    I love doctors who communicate by email! SO much faster than trying to leave phone messages and waiting for a returned call.
    I'll let you all know if anything changes. :)

    Lisa
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #26
    bruins1971 said:

    sorry to hear about the cea
    Can anyone tell me how important the CEA number actually is. My onc says its helpful but not to read to much into that number. At my highest in the beginning right when I started chemo after the colon surgery it was only 26 and that was when I still have two tumors in my liver. Now after all this chemo and two surgeries my CEA is down to 1.8

    Bobby

    Bobby
    As it has been explained to me. First you need a baseline CEA and it is best to get one before any surgery or treatments. I actually keep an excel spreadsheet with mine on it. For some people it isn't a good indicator but for others it is. Mine does seem to be good for me as it was 9.7 at dx and prior to any treatments. It fell to 2.6 after surgery. This dip in the number shows that removal of the tumor at that time took care of the CEA that was being express by the tumor. My onc says that he expects my CEA to rise before anything shows on any scans as the CEA can pick up increases before the cells are large enough to pick up on scan.

    Also, not all tumors or cancer occurences release the same amount of CEA. therefore, you can have a tumor that is a good indicator by CEA numbers but you can also have a period of NED and then a recurrence that might not express the same amount of CEA and therefore not be useful. The number of the CEA is not what is important. It is the trend of the CEA number that is important. Normal CEA levels are 0-3 for non-smoker and 0-5 for smokers. Other things can cause an increase in CEA such as inflamations and diseases that are inflamatory. therefore, a one time increase in CEA might not be indicative of cancer increase so it is important to retest and watch for trends if your CEA is a good indicator for you.

    Hope that helps
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #27
    lisa42 said:

    the plan
    Well, I heard back more quickly than I thought I would from the email I sent my onc this afternoon. He said that with the CEA rose when I went off the chemo, so he thinks the bigger cause of that is my lung nodules. He wants to continue the current chemo with Avastin for maybe even a few months before doing the transanal exision to get any growth there under control first. He said he suspects Dr. Ramamoorthy (the colorectal surgeon) will agree that it's not an emergency and will be okay with waiting (as long as it doesn't grow larger or cause me any worse symptoms in the meantime). We'll monitor that & I'm supposed to let the onc know right away if anything there changes.
    So, I guess that's the plan.
    I love doctors who communicate by email! SO much faster than trying to leave phone messages and waiting for a returned call.
    I'll let you all know if anything changes. :)

    Lisa

    Plans are good!
    I am glad you have the game plan in place, Lisa!
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #28
    lisa42 said:

    the plan
    Well, I heard back more quickly than I thought I would from the email I sent my onc this afternoon. He said that with the CEA rose when I went off the chemo, so he thinks the bigger cause of that is my lung nodules. He wants to continue the current chemo with Avastin for maybe even a few months before doing the transanal exision to get any growth there under control first. He said he suspects Dr. Ramamoorthy (the colorectal surgeon) will agree that it's not an emergency and will be okay with waiting (as long as it doesn't grow larger or cause me any worse symptoms in the meantime). We'll monitor that & I'm supposed to let the onc know right away if anything there changes.
    So, I guess that's the plan.
    I love doctors who communicate by email! SO much faster than trying to leave phone messages and waiting for a returned call.
    I'll let you all know if anything changes. :)

    Lisa

    Yay Lisa
    So glad you heard from your onc and that you're happy with the plan. Thanks for the update. Sounds good to me too ... but, what the heck do I know? The more I know, the more I realize I don't know chit. LOL Hugs and prayers for you.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #29
    Praying it's okay
    I don't really know enough to offer an opinion in this case, but I just want you to know that I care, and I pray things will right themselves very soon. I can see why you'd be scared, but try not to get ahead of yourself.

    *hugs*
    Gail
  • okthen
    okthen Member Posts: 232
    #30
    Lisa, just want you to know
    Lisa, just want you to know you're getting prayers from this way also! You have always been so kind and helpful to me!
    All I can offer is prayers and hugs, I wish it could be more....
    Chriss
  • Kerry S
    Kerry S Member Posts: 606 Member
    #31
    My CEA is just strange

    At the onset of this crap, before the first transanal surgery, my CEA was 3. Then after chemo/rad, it dropped to 2.5. After the liver kill off, 1.6 dropping to 1.4. It went up to 2 at the time recurrent bowel resection. A month ago it was down to 1.3. I am a heavy smoker so up to 5 looked good to me. False hope there.

    Even with this low number, my super colon doc says we will still keep an eye on CEA.

    I am just wired different. I think God was playing prototype games making my body.

    Kerry
  • geotina
    geotina Member Posts: 2,111 Member
    #32
    Darn it anyway -
    not what I wanted to read when I woke up today. You always think things through thoroughly and I'm sure you will continue to do so. Sounds like staying on chemo for now is the way to go unless that rectal nodule starts giving you too much grief. I know it is easy to say "get it out" but we all know that sometimes that is just not the way it works.

    I'll keep you in my prayers that the chemo continues to do its job and things can get under control again. I know too well the felling come on already, I need a break from this.

    Take care my friend - Tina
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #33
    thanks again
    Hi,

    Just wanted to say thank you to those of you who recently replied. My heart is warmed every time I write anything and get such dear sweet replies of knowing you think of me and even pray.

    Take care and God bless-
    Lisa
  • newperson
    newperson Member Posts: 76
    #34
    hugs to you
    Lisa, I'm sorry. The rising CEA is always a worry. I hope it was becuase of your chemo break and it will be under control again after you continue with you chemo. Did you check out nanoknife with Dr. David Imagawa at UC Irvine? Here is his email address again: dkimagaw@uci.edu. You are in my prayers. Best wishes to you. - Lucy
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #35
    lisa42 said:

    thanks again
    Hi,

    Just wanted to say thank you to those of you who recently replied. My heart is warmed every time I write anything and get such dear sweet replies of knowing you think of me and even pray.

    Take care and God bless-
    Lisa

    Dear Lisa
    Sorry to hear that your CEA wants to rise every time you have a 'chemo holiday'.

    I am hopeful that one day soon you will see the good cumulative results of all your treatments.

    Prayers for you as you continue this battle. May you find even more strength and heart tomorrow than you have today.

    Marie
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #36
    newperson said:

    hugs to you
    Lisa, I'm sorry. The rising CEA is always a worry. I hope it was becuase of your chemo break and it will be under control again after you continue with you chemo. Did you check out nanoknife with Dr. David Imagawa at UC Irvine? Here is his email address again: dkimagaw@uci.edu. You are in my prayers. Best wishes to you. - Lucy

    Lucy- re. nanoknife
    Hi Lucy,

    I sent an email re. the nanoknife but never got a reply. I did discuss it with my oncologist, however, and he told me that he has sent a few of his patients up to UCI for nanoknife evaluation & none of them ended up getting it done. I know each person's case is different, but with those he sent up they were told that they would benefit from either surgery or even cyberknife. He said that he was told nanoknife is still newer and doesn't have the claims behind it like cyberknife does. That's when I went for the cyberknife eval. Since I'm now not having cyberknife either, I will keep nanoknife in mind for the future, but I don't think I'm going to pursue at this time.
    Thanks again-
  • abmb
    abmb Member Posts: 311
    #37
    Lori-S said:

    Bobby
    As it has been explained to me. First you need a baseline CEA and it is best to get one before any surgery or treatments. I actually keep an excel spreadsheet with mine on it. For some people it isn't a good indicator but for others it is. Mine does seem to be good for me as it was 9.7 at dx and prior to any treatments. It fell to 2.6 after surgery. This dip in the number shows that removal of the tumor at that time took care of the CEA that was being express by the tumor. My onc says that he expects my CEA to rise before anything shows on any scans as the CEA can pick up increases before the cells are large enough to pick up on scan.

    Also, not all tumors or cancer occurences release the same amount of CEA. therefore, you can have a tumor that is a good indicator by CEA numbers but you can also have a period of NED and then a recurrence that might not express the same amount of CEA and therefore not be useful. The number of the CEA is not what is important. It is the trend of the CEA number that is important. Normal CEA levels are 0-3 for non-smoker and 0-5 for smokers. Other things can cause an increase in CEA such as inflamations and diseases that are inflamatory. therefore, a one time increase in CEA might not be indicative of cancer increase so it is important to retest and watch for trends if your CEA is a good indicator for you.

    Hope that helps

    question for you Lori
    I don't know what my husband's CEA was before surgery or Chemo, the only numbers I have are from the end of chemo and that was 1.8 in Nov. 09, then in April of this year 0.7, July 1.0, October 1.2. Is this something that should worry me or is this still okay since it is very low. Just wondering if this means something might be brewing? Any info would be appreciated. Thanks in advance. Margaret
  • abmb
    abmb Member Posts: 311
    #38
    lisa42 said:

    the plan
    Well, I heard back more quickly than I thought I would from the email I sent my onc this afternoon. He said that with the CEA rose when I went off the chemo, so he thinks the bigger cause of that is my lung nodules. He wants to continue the current chemo with Avastin for maybe even a few months before doing the transanal exision to get any growth there under control first. He said he suspects Dr. Ramamoorthy (the colorectal surgeon) will agree that it's not an emergency and will be okay with waiting (as long as it doesn't grow larger or cause me any worse symptoms in the meantime). We'll monitor that & I'm supposed to let the onc know right away if anything there changes.
    So, I guess that's the plan.
    I love doctors who communicate by email! SO much faster than trying to leave phone messages and waiting for a returned call.
    I'll let you all know if anything changes. :)

    Lisa

    Keeping you in my Prayers
    I will keep you in my Prayers. Good Luck. Margaret
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #39
    abmb said:

    question for you Lori
    I don't know what my husband's CEA was before surgery or Chemo, the only numbers I have are from the end of chemo and that was 1.8 in Nov. 09, then in April of this year 0.7, July 1.0, October 1.2. Is this something that should worry me or is this still okay since it is very low. Just wondering if this means something might be brewing? Any info would be appreciated. Thanks in advance. Margaret

    Hey Margaret
    It's tough if you're not sure what the trend is and if it's a good marker. I wouldn't worry about it under 3 unless he is a smoker then 5 and under. CEA flutuates. That looks like a good CEA to me! Hope you and hubby continue to do well. Happy Holidays!
  • Nana b
    Nana b Member Posts: 3,030 Member
    #40
    lisa42 said:

    Lucy- re. nanoknife
    Hi Lucy,

    I sent an email re. the nanoknife but never got a reply. I did discuss it with my oncologist, however, and he told me that he has sent a few of his patients up to UCI for nanoknife evaluation & none of them ended up getting it done. I know each person's case is different, but with those he sent up they were told that they would benefit from either surgery or even cyberknife. He said that he was told nanoknife is still newer and doesn't have the claims behind it like cyberknife does. That's when I went for the cyberknife eval. Since I'm now not having cyberknife either, I will keep nanoknife in mind for the future, but I don't think I'm going to pursue at this time.
    Thanks again-

    Geez, where have I been!
    Geez, where have I been! Lisa, so glad you got it sorted it out!! I think we should all go to our individual ONC's mention you and your plan and see what feedback we get!! Hang in there! Hugs!!
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #41
    lisa42 said:

    Roger,
    "Why wait" is a good question- I have one nodule in the rectum, but numerous in the lungs and 4 in the liver- so perhaps waiting on the excision and pounding the lung and liver tumors with a complete chemo+Avastin a few more cycles would be the way to go, as I'm now thinking. Yes, the rectal node does need to come out, but I don't want it to come out at the expense of all the others being given more opportunity to grow while being off the Avastin. CEA has always been quite indicative for me- every time it's gone up, that has always shown up in tumor growth or increase in PET uptake. Every time it's gone down, my scan has shown shrinkage and/or reduction in uptake. So, I'm taking the big rise pretty seriously. Not that I want to freak out over it, but I know what it means.
    Hope I get a good plan in place soon too- I will. :)

    Lisa, keeping you in my
    Lisa, keeping you in my thoughts and prayers. Sorry to hear of the level rising after a short break.. hugs.. Petrina

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