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

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I recently posted that I am getting my CEA tested weekly because it is rising...every test a little more. from 5.0 to 10.5 as of last Monday. However, my PET/CT shows nothing..all clear. I have 2 different teams of docs..with 2 different opinions...and I don't know who to listen to. Here are THEIR opinions but i REALLY want to hear all of yours.

Onc since DX: Last week he said to do another CEA this past Monday... if above 10...that pretty much rules anything else out except recurrance. Then he went on vacation and left me hanging. Didn't know if I should continue with my maintenance chemo last Tues since Onc wasn't around to advise so I declined..didn't see the point if it ain't working. They made me another appointment for maintenance chemo tomorrow..again, whats the point??? Do you all see a point in having it??? This will be 3 weeks in a row with no chemo of any kind and avastin was stopped 2 months ago. Onc said...before he left..if it rises above 10 then we will need to start chemo again...and a new chemo....

Radiology Oncologist from St. Louis Univ Cyberknife- He did my last 2 PET/CT's.... checked the last scan 3 times...just to make sure he didn't miss anything.... Not even nothing there that would make him raise an eyebrow. He says that even though CEA numbers are rising...you can't treat a number! He can't treat what he can't see. I have not had another colonoscopy since DX...which has been just over 2 years ago... so he ordered me one for Thursday and if that is clear he wants to do a CT. He is suggesting a "wait and see" approach.

I have an issue with "wait and see"..... I'm scared to WAIT too long and have things all of the sudden pop up and be out of control. I also have an issue with doing chemo when there is nothing there to treat. I mean.... lets say a tumor pops up somewhere and can be treated with RFA or even surgery instead of chemo...do I go that route? OR... do I change to a different maintenance chemo and try that for a while????...I DON'T KNOW!!! And I don't understand why my Onc would want to start a "new" chemo when I have had such success with Folfiri.... I didn't stop taking it because it stopped working... I stopped because it worked SO WELL and got me NED.

I have read that it is bad for a stage IV person to just stop everything....and do no chemo at all..not even maintenance...because it can come back with a vengence(sp?) Well, ain't that what its doing now and I HAVE BEEN on maintenance chemo!! I have also read maintenance chemo is not even considered by some docs.

So..tomorrow..I can go ahead with my old maintenance chemo.... that may..or may not be working..how do I know if I don't know why CEA is rising..FOR SURE. OR..do I skip it and wait for results of Cololoscopy/CT on Thursday/Friday and figure it out from there...what if those are clear??? I also read where they will open your tummy and look around for what they can't see on scans.... for some reason that don't seem right. Does it?

Anyway, my mind is on overflow trying to decide what to do so I thought maybe ya'll could put your 2 cents in and maybe that would help me sort things out. I appreciate any input you can give me. take care

Jennie

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Sorry for my English! .
Hugs!

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I gotcha now my friend!!!

John23's picture
John23
Posts: 2140
Joined: Jan 2007

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

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I love the colours and about the corn on the web, can you send me some links.
I can only find medical research papers.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

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.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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
Posts: 1428
Joined: Feb 2011

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's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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
Posts: 1428
Joined: Feb 2011

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

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

Jennie

smokeyjoe
Posts: 1428
Joined: Feb 2011

When you go for maintenance chemo. what is it, do you have to sit for an infusion, or is it pills??

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

For maintenance I get a 30 min drip of Leuco and 5FU Bolus

maxsyin
Posts: 1
Joined: May 2011

hi!
your doc is pretty much right in having wait and watch policy! u cant treat what u cant see!
mine is also a very challenging case.my cea levels have sharply risen in past 3 months from 12 to 833! (checked from 2 diffrent reputable labs!)my mri and colonoscopy are just fine! my doc has asked me for wait and watch policy.....

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