Opinions needed PLEASE!....CEA rising...scans clear...chemo or not?

13

Comments

  • idlehunters
    idlehunters Member Posts: 1,787 Member
    lisa42 said:

    what I'd do
    Hi Jennie,

    That's so wonderful that your PET shows NOTHING! But, still concerning that your CEA continues rising. What I would do (not giving medical advice, just saying what I think I'd do if I were the one in your shoes) is that I don't think I'd go on the maintenance chemo this time, but I'd hit the naturopathic treatments HARD- immune boosting and anything/everything they recommend.

    As you know, I'm doing both together at this time & if my cancer ever gets to the point where I'm hoping and praying it will (nothing showing on the scan, or at least showing shrinkage and die-off), I would stop the chemo and just rely on the naturopathic dr's advice. After so much chemo, I just want my body to be rid of the poison.

    Just saying...

    Lisa

    Hey Lisa.....
    I did turn down my chemo again today. Over the past few days I have sat back and gave my life some serious thought. What is different..if anything. You know what has changed A LOT???? My diet and my supplements. When I got that food poisoning 6 weeks or so ago .... it all changed then. My juicing went down to 1 cup every other day now.... stopped all supplements except Vit D and probiotic. The diet is the biggy.... I started drinking Pepsi again..lots of it...as a matter of fact... I cannot seem to get enough sugar. I have never been a huge sugar freak...other than Pepsi... but this past month has been..BAD..REAL BAD. I think I realized it when my R.N. daughter was in charge of the free kidney testing the other day. They also checked for diabetes. My sugar count was very high... like pre-diabetes high. My kidneys tested normal and they did some other test with my sugar than rendered me normal but in a caution zone. They made me go thru the "kidney mobile" which had demos on how much sugar is in what..OMG! I was seriously shocked. When the man asked who drank soda my daughter offered my info of "at least 5 cans a day"...thanks daughter!.... and the mans mouth dropped open when I told him I only drank that much to wash down the ice cream bars!! Yeah... I been real bad. I have been on a weight loss mission for the past year. Lost 82 pounds...NOT THIS PAST MONTH...in 6 or so weeks.. I have gained 17 lbs!!!! Yep....gotta be all that sugar....and fat from all the excess eating I been doing too.

    However, this does not cause CEA to rise...maybe if there was cancer growth..but none seen...so that puts me back to square one. Lisa, I had no idea your CEA had started out WAY LOW..normal....and has rose to the level it is now. I know you are relating to my situation and I am ever so grateful that you offer your opinion and encouragement. It means so much!

    I guess I will have more news by the end of the week so until then I guess I have to grin and bear it. You take care my friend.

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member

    Jennie
    Hi Jennie,

    I would not start chemo until I knew exactly what we were treating. I completely agree with your radiology onc. That is just my opinion, but you must follow your gut and do what you think is right. I am sending prayers and hugs your way. You'll make the right choice.

    Hugs,
    sara

    Hey Sara...
    Good to hear from you!!!! Yes... I am holding back on chemo untl I know more. That is what my gut is telling me so that is what I gotta do. Thanks for prayers and hugs back to ya girl!
    Take care.

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member

    Hi Jennie
    Hi Jennie,
    I'd say you are doing a great job of figuring out your next step. I'm sorry that you're having to tackle this right now but it sounds like you're getting a plan in place. **** finally had another colonoscopy 2 years, after the first one that found the cancer. All was well in his colon. It was good to know.
    I agree with Tina, do make sure they scan all of you.

    Thinking of you and hoping that darn CEA starts a downward trend.

    Aloha,
    Kathleen

    Hey Kathleen!...
    Great to hear Dicks colonoscopy came out good. Thats encouraging news. The last 2 PET/CT's I have had they scanned head to toe. I have never had that done previosly. It was always chin toid thigh. It felt good to see what was going on in my brain. I always wonder about that area...of course I have wondered about that area my whole life..LOL!!! You take care! Tell **** I said "Hey"

    Jennie
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    Hi Jennie
    Hi Jennie,
    I'd say you are doing a great job of figuring out your next step. I'm sorry that you're having to tackle this right now but it sounds like you're getting a plan in place. **** finally had another colonoscopy 2 years, after the first one that found the cancer. All was well in his colon. It was good to know.
    I agree with Tina, do make sure they scan all of you.

    Thinking of you and hoping that darn CEA starts a downward trend.

    Aloha,
    Kathleen

    Jennie cut you understand my post now?
    Sorry for my English! .
    Hugs!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    smokeyjoe said:

    I'm going in today to see
    I'm going in today to see onc. had scan on Thursday, this is first C.T. halfway through folfiri treatments. I don't think my CEA is a good indicator, it's 1.4, and hovers around there. What if the scans show all clear. After the six months do I continue with chemo?? Dr. said something about a six month break. Of course I'm praying it's gone after doing chemo. and pray it doesn't come back, but I know the odds. I just hope I'm one of those fortunate individuals who can put this all behind me. Sundanceh just wondering "what your take on it" is, sorry I'm relatively new to this. You've been through so much. You all have been. I'm amazed by your strength.

    SmokeyJoe
    Hey there...

    My take for Jennie was to do a full CT scan - do the scope if she wanted to do that - go enjoy herself for her mother's day get away - and then when you come back from that...

    Do another round of bloodwork to see if CEA has risen or staying stable. Review the CT results to see if there is any kind of mass.

    And if there were no mass, I would not be voluntarily taking chemo to chase down a random ghost in my body - not yet.

    At that point, a "wait and see" approach of 6-8 weeks and then they could scan again and use that as a baseline comparison.

    Pumping the heavy chemo drugs into our system with the hopes that we'll get something that may or not be there is a dangerous thing. This stuff is just not good for us. And you risk desensitation to the chemo when you may need the heavier stuff down the road.

    Jennie, I know you hate to "watch and wait" - you like to take action, but sometimes it is indeed the best plan. Remember, "ony fools rush in where Angels fear to tread." LOL:)

    Take care Smoke - and Jennie, you know I love ya'

    -Craig
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Sundanceh said:

    SmokeyJoe
    Hey there...

    My take for Jennie was to do a full CT scan - do the scope if she wanted to do that - go enjoy herself for her mother's day get away - and then when you come back from that...

    Do another round of bloodwork to see if CEA has risen or staying stable. Review the CT results to see if there is any kind of mass.

    And if there were no mass, I would not be voluntarily taking chemo to chase down a random ghost in my body - not yet.

    At that point, a "wait and see" approach of 6-8 weeks and then they could scan again and use that as a baseline comparison.

    Pumping the heavy chemo drugs into our system with the hopes that we'll get something that may or not be there is a dangerous thing. This stuff is just not good for us. And you risk desensitation to the chemo when you may need the heavier stuff down the road.

    Jennie, I know you hate to "watch and wait" - you like to take action, but sometimes it is indeed the best plan. Remember, "ony fools rush in where Angels fear to tread." LOL:)

    Take care Smoke - and Jennie, you know I love ya'

    -Craig

    Thanks for the reply
    Thanks for the reply Sundanceh....well, got an all stable from the onc. All lymph nodes in normal range, one spot on my spleen that they are watching is unchanged. Said 3 more months of chemo and if stable still time for a 6 month break, and just scans....keeping my fingers crossed!!! Jennie I hope for the best for you, you've been through so much and have had amazing results on Folfiri so far. I asked my onc. about supplements, he said not to take Folic Acid as it would counteract the chemo. Just wondering if you've gotten the same advice.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    pepebcn said:

    Jennie cut you understand my post now?
    Sorry for my English! .
    Hugs!

    Yes Pepe
    I gotcha now my friend!!!
  • John23
    John23 Member Posts: 2,122 Member

    Yes Pepe
    I gotcha now my friend!!!

    Jennie....

    Almost everything I found does not specify the "numbers",
    but what I did find disturbs even me.....

    The "good news", is that the general consensus is to use
    CEA as a tool, not a decision maker. It appears that most
    oncologists will not start chemo if it's based only on a high
    CEA count; it's just not accurate enough, and it doesn't
    indicate where the cancer is or what organ it is related to.

    If the CEA count is high, and they administer chemo for what they
    think is colon cancer, when it's actually lung cancer metastases,
    the chemo likely won't work; So why do it?

    The bottom line? CEA is a generic; a tumor marker that will not
    provide much of an answer on it's own. When it's used along
    with other tests, it can be of value.

    The following link explains it fairly well, using words that even
    I can understand: Tumor Markers in Colon Cancer

    DISCLAIMER:

    For anyone that does not desire to read anything at all that
    might be construed in any way as being "Negative Karma",
    don't click on the link. You have been forewarned.


    A safer link:
    Google: CEA is not a screening test for cancer

    BUT.... There may be something undesirable to some readers there also.

    (Grief.... this is like trying to avoid porn on the web)

    Be Well !

    John
  • scouty
    scouty Member Posts: 1,965 Member

    Hey Lisa.....
    I did turn down my chemo again today. Over the past few days I have sat back and gave my life some serious thought. What is different..if anything. You know what has changed A LOT???? My diet and my supplements. When I got that food poisoning 6 weeks or so ago .... it all changed then. My juicing went down to 1 cup every other day now.... stopped all supplements except Vit D and probiotic. The diet is the biggy.... I started drinking Pepsi again..lots of it...as a matter of fact... I cannot seem to get enough sugar. I have never been a huge sugar freak...other than Pepsi... but this past month has been..BAD..REAL BAD. I think I realized it when my R.N. daughter was in charge of the free kidney testing the other day. They also checked for diabetes. My sugar count was very high... like pre-diabetes high. My kidneys tested normal and they did some other test with my sugar than rendered me normal but in a caution zone. They made me go thru the "kidney mobile" which had demos on how much sugar is in what..OMG! I was seriously shocked. When the man asked who drank soda my daughter offered my info of "at least 5 cans a day"...thanks daughter!.... and the mans mouth dropped open when I told him I only drank that much to wash down the ice cream bars!! Yeah... I been real bad. I have been on a weight loss mission for the past year. Lost 82 pounds...NOT THIS PAST MONTH...in 6 or so weeks.. I have gained 17 lbs!!!! Yep....gotta be all that sugar....and fat from all the excess eating I been doing too.

    However, this does not cause CEA to rise...maybe if there was cancer growth..but none seen...so that puts me back to square one. Lisa, I had no idea your CEA had started out WAY LOW..normal....and has rose to the level it is now. I know you are relating to my situation and I am ever so grateful that you offer your opinion and encouragement. It means so much!

    I guess I will have more news by the end of the week so until then I guess I have to grin and bear it. You take care my friend.

    Jennie

    Sugar and mets
    Jennie,

    You really need to read that long article Hatsheput posted about sugar being toxic (Other Lisa, you too). It will completely explain why your testing showed you to almost be diabetic. FYI, people with type 2 diabetes increase their risk of colorectal cancer 20-50% all because of sugar and their bodies response to too much of it especially in liquid form, like your Pepsi.

    The president of Sloan Kettering's Cancer Center also chimes in how sugar ultimately feeds the blood supply of mets. This is all very recent research results and pretty eye opening.

    The lastest studies now show that sugar absolutely not only contributes to us getting cancer but it helps it grow and spread! Scary stuff but girlfriend you need to know and I don't think you are one of those head in the sand types.

    Please read the article or at least read my thread on liver damage to better understand what sugar does to our bodies. To read the part about mets, look at my response to Betsydoglover on that same thread.

    As always, let me know if I can help you in any way!

    Lisa P.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    John23 said:

    Jennie....

    Almost everything I found does not specify the "numbers",
    but what I did find disturbs even me.....

    The "good news", is that the general consensus is to use
    CEA as a tool, not a decision maker. It appears that most
    oncologists will not start chemo if it's based only on a high
    CEA count; it's just not accurate enough, and it doesn't
    indicate where the cancer is or what organ it is related to.

    If the CEA count is high, and they administer chemo for what they
    think is colon cancer, when it's actually lung cancer metastases,
    the chemo likely won't work; So why do it?

    The bottom line? CEA is a generic; a tumor marker that will not
    provide much of an answer on it's own. When it's used along
    with other tests, it can be of value.

    The following link explains it fairly well, using words that even
    I can understand: Tumor Markers in Colon Cancer

    DISCLAIMER:

    For anyone that does not desire to read anything at all that
    might be construed in any way as being "Negative Karma",
    don't click on the link. You have been forewarned.


    A safer link:
    Google: CEA is not a screening test for cancer

    BUT.... There may be something undesirable to some readers there also.

    (Grief.... this is like trying to avoid porn on the web)

    Be Well !

    John

    Thanks John...
    I appreciate your input on this. I did read the articles. I talk to my Onc tomorrow and should have test results by end of week so maybe they will tell me more. Have a nice nite.

    Jennie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    scouty said:

    Sugar and mets
    Jennie,

    You really need to read that long article Hatsheput posted about sugar being toxic (Other Lisa, you too). It will completely explain why your testing showed you to almost be diabetic. FYI, people with type 2 diabetes increase their risk of colorectal cancer 20-50% all because of sugar and their bodies response to too much of it especially in liquid form, like your Pepsi.

    The president of Sloan Kettering's Cancer Center also chimes in how sugar ultimately feeds the blood supply of mets. This is all very recent research results and pretty eye opening.

    The lastest studies now show that sugar absolutely not only contributes to us getting cancer but it helps it grow and spread! Scary stuff but girlfriend you need to know and I don't think you are one of those head in the sand types.

    Please read the article or at least read my thread on liver damage to better understand what sugar does to our bodies. To read the part about mets, look at my response to Betsydoglover on that same thread.

    As always, let me know if I can help you in any way!

    Lisa P.

    Thanks Lisa.....
    I read your post and I will read Hatsheput's now. Thanks again for all you do!!!

    Jennie
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Wait for more info before more chemo
    My opinion - most of the time colon cancer is slow growing. Chemo only works for just so long. So if there is no cancer seen on scans, I would not want chemo just because CEA was rising. I want to save it till absolutely needed. Plus we get worn down on it. If you can give your body a little break, it will help get some strength back if you do need to go back on it.

    My CEA is a good indicator too. Recently it stayed at 2 for a long time and my scan February 1 was good. So I went on maintenance chemo (5-FU and Avastin - no Irinotecan). My CEA started coming back up right away. My oncologist said we'd watch it and not worry till it got over 6. I hit 6 and he still told me to go ahead with my travel plans and we'd scan again when I got back. A month later my CEA was over 11, and my PET did pick up 5 nodes enlarged and active. So I am back on FOLFIRI w/Avastin. I won't do "maintenance chemo" again - at least not just 5-FU. Maintenance for me will more likely be a lower dose of FOLFIRI w/Avastin. I see no point in doing 5-FU without the Irinotecan when I progress on that...

    I'd ask to repeat the CEA in a couple weeks, and do another scan if it continues to rise. I had a clear scan, and just over 2 months later, the next one was not clear. While I wonder how smart it was to have 5 weeks in between chemo, I think basically my cancer had over 2 months off from chemo because the maintenance chemo wasn't doing the job. I see no point in doing what isn't working - so I wouldn't do the maintenance chemo right now if I were you. Then gather more info - another CEA check, and another scan. Then hopefully you are more informed on exactly what is going on, so you can make an easier decision.

    Sorry your onc really left you hanging. Not good...
  • idlehunters
    idlehunters Member Posts: 1,787 Member

    Wait for more info before more chemo
    My opinion - most of the time colon cancer is slow growing. Chemo only works for just so long. So if there is no cancer seen on scans, I would not want chemo just because CEA was rising. I want to save it till absolutely needed. Plus we get worn down on it. If you can give your body a little break, it will help get some strength back if you do need to go back on it.

    My CEA is a good indicator too. Recently it stayed at 2 for a long time and my scan February 1 was good. So I went on maintenance chemo (5-FU and Avastin - no Irinotecan). My CEA started coming back up right away. My oncologist said we'd watch it and not worry till it got over 6. I hit 6 and he still told me to go ahead with my travel plans and we'd scan again when I got back. A month later my CEA was over 11, and my PET did pick up 5 nodes enlarged and active. So I am back on FOLFIRI w/Avastin. I won't do "maintenance chemo" again - at least not just 5-FU. Maintenance for me will more likely be a lower dose of FOLFIRI w/Avastin. I see no point in doing 5-FU without the Irinotecan when I progress on that...

    I'd ask to repeat the CEA in a couple weeks, and do another scan if it continues to rise. I had a clear scan, and just over 2 months later, the next one was not clear. While I wonder how smart it was to have 5 weeks in between chemo, I think basically my cancer had over 2 months off from chemo because the maintenance chemo wasn't doing the job. I see no point in doing what isn't working - so I wouldn't do the maintenance chemo right now if I were you. Then gather more info - another CEA check, and another scan. Then hopefully you are more informed on exactly what is going on, so you can make an easier decision.

    Sorry your onc really left you hanging. Not good...

    Hey Kathryn!....
    Thanks so much for your opinion. I am thinking on the same line as you. I declined maintenance last week and today. I do the exact same chemo that you do....Folfiri when on full force and no CPT-11 when on maintenance. I too am not going to do maintenance again...pointless! I will make a decision after these upcoming tests. Folfiri has worked well for me with few side effects. I sure hate the idea of losing my hair again but its sure better than being dead. I just hate wigs and my bald head is FUGLY!!!! LOL..... anyway...I will update you all when I know more. Take care!

    Jennie
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member

    Hey Kathryn!....
    Thanks so much for your opinion. I am thinking on the same line as you. I declined maintenance last week and today. I do the exact same chemo that you do....Folfiri when on full force and no CPT-11 when on maintenance. I too am not going to do maintenance again...pointless! I will make a decision after these upcoming tests. Folfiri has worked well for me with few side effects. I sure hate the idea of losing my hair again but its sure better than being dead. I just hate wigs and my bald head is FUGLY!!!! LOL..... anyway...I will update you all when I know more. Take care!

    Jennie

    The hair
    Yep - I have hair again. It is actually at least an inch long now. But not for long. Thursday will be my second tx with Irinotecan since going back on it. That's when it started falling out last time. And I was just getting used to short hair after having long hair all my life. Oh well, it is only hair. I'd rather be alive and bald then dead with lots of hair too! I don't like wigs either - I go bald or wear a hat if my head is cold. It shouldn't be so bad this time with summer coming up. IF it ever gets here. We had snowflakes yesterday morning again... Yuck.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member

    Hey Gail....
    You're such a sweet person......thanks for your concern. take care

    Jennie

    You, too!
    *smiles* at Jennie. Takes one to know one! You're welcome!

    *hugs*
    Gail
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    The hair
    Yep - I have hair again. It is actually at least an inch long now. But not for long. Thursday will be my second tx with Irinotecan since going back on it. That's when it started falling out last time. And I was just getting used to short hair after having long hair all my life. Oh well, it is only hair. I'd rather be alive and bald then dead with lots of hair too! I don't like wigs either - I go bald or wear a hat if my head is cold. It shouldn't be so bad this time with summer coming up. IF it ever gets here. We had snowflakes yesterday morning again... Yuck.

    Jennie , just notice that I just arrived from onc, and in 4
    rounds CEA dropped from 15 to 8 ,so it confirms that old chemo Is still working!.( folfiri/avastin), it's interesting to know that if we achieve again good results this time! ( total response) my onc would suggest to stop any chemo!.does it have any sense to you?
    Hugs!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    pepebcn said:

    Jennie , just notice that I just arrived from onc, and in 4
    rounds CEA dropped from 15 to 8 ,so it confirms that old chemo Is still working!.( folfiri/avastin), it's interesting to know that if we achieve again good results this time! ( total response) my onc would suggest to stop any chemo!.does it have any sense to you?
    Hugs!

    Hey Pepe, my onc. said
    Hey Pepe, my onc. said after the final three months if scans show still the same take a break from chemo. Good the folfiri is working for you. How large do your lymph nodes get?? Do they get very big or still within the normal range??
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    smokeyjoe said:

    Hey Pepe, my onc. said
    Hey Pepe, my onc. said after the final three months if scans show still the same take a break from chemo. Good the folfiri is working for you. How large do your lymph nodes get?? Do they get very big or still within the normal range??

    It was some more than 2cm ,now don't know until
    scan mid may! but I can touch it as it is on my collarbone , and in my opinion now is les than half since then!
    Hugs!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    pepebcn said:

    It was some more than 2cm ,now don't know until
    scan mid may! but I can touch it as it is on my collarbone , and in my opinion now is les than half since then!
    Hugs!

    Jennie, did anything show
    Jennie, did anything show with your lymph nodes?? Any enlarged, even if they fall within the "normal range" of 1 cm???
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    smokeyjoe said:

    Jennie, did anything show
    Jennie, did anything show with your lymph nodes?? Any enlarged, even if they fall within the "normal range" of 1 cm???

    SmoJoe
    No node involvemet now...or ever. When tested at DX all were neg.

    Jennie