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Cea not an indicator

Fucc
Posts: 91
Joined: Sep 2012

I have stage iv a cc. I have had a colon resection, a lverresection and completed 9 rounds of Folfox so far. My oncologist wants to drop the oxalplatin after ronund 10, and give me only the 5fu for the last two. He then wanshame to have a ct scan about a month after chemo and if all looks good then every four to six months thereafter. Cea is not an indicator for me and has always been normal, as well as ca 19 (I thinkthat his what it is). I'm a little worried about the timing of scans and am wondering what others who do not have cea as an indicator have done. 

 

Thx. 

jen2012
Posts: 1207
Joined: Aug 2012

We are kind of at this point too. Onc is being a little wish washy on the plan. My husband has his 12th treatment next week and then a scan and then? ? Hopefully surgery but she mentioned dropping the avastin to get ready for surgery...if there is surgery...but doing the rest of the treatment. She hasnt said what the plan is for after surgery. Weve settled into a routine with chemo and feel like its working and "being done" is a little scary. She feels like cea is a good indicator for him...but it was normal at diagnosis...never got above 9 and has been around 2 for months.

Do you want them to scan more often?

Fucc
Posts: 91
Joined: Sep 2012

I'm not sure what would be best. I know that too many scans come with problems Linked to the radiation. Also, cans are pretty hard to deal with mentally. I'm thinking that the next few scans should be at three months. If something does show up, the sooner it's caught the better. My oncologist continues to monitor my cea, apparently although it hasn't been an indicator so far, this can change. Its so hard living in constant fear of this disease. 

smokeyjoe
Posts: 1428
Joined: Feb 2011

My Cea was low,  would sit around 1  and lower for a long time.....I did ten months of folfiri and then took a 10 month break....Cea started to rise...and scans showed progression.    It seemed at first that the CEA wasn't a marker ..... but now with it going up  and progression showing on scans it seems that CEA may be reliable for me after all.  

jen2012
Posts: 1207
Joined: Aug 2012

It is hard having this constant fear :(.   I don't think 3 months sounds unreasonable, but I share your concern about the radiation.  

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Alot of times, oncologists scan us too quickly after we wrap up treatment.  My new onc had some different ideas about that...his theory is to wait at least two months after treatment ends...it gives the body time to recover and will produce a more accurate result. 

For example, you scan immediately...and you're clear....now, you're out the door for 6-more months...first, that's too long of a time right now...and second, this can lead to false assumptions from the test itself.

My onc feels that waiting about 2-months would give the cancer time to show itself again if anything were still present to register a reading...if something is there, you're johnny right on the spot of it....if it isn't.....then we go to the next scan cycle.

Which...

I would recommend every 3 months for the first year...if all scans clear...then perhaps graduate to every 6-month intervals.  While radiation is always a factor, the time to "invest" in radiation would be now...while the cancer is fresh...and the iron hot.

I just recently graduated back to six month scan cycles....after 8.8 years in the cancer battle....

My first onc put me right away on 6-month schedules...that lasted one year...and it's been hell ever since...I just recently all these years later, finally moved back to the 6-month spot...and it still makes me a little apprehensive about it......once a year scans would really mess me up. 

Glad the CA19-9 is trending in the same direction as the CEA...I believe strongly in this marker (more for an indicator)....mine has always been off the chart...anywhere in the 300's as high as the 600's...a few months ago, it was the lowest it has been in a long time. 

That's my take.....best wishes!

-Craig

BTW, Fucc...I got real cute a couple of years ago and decided I would "monitor" my bloodwork and CEA for cancer indications...was the lowest CEA in my life (0.5) and I had tumor the size of a tangerine embedded in my chest cavity that was cutting off my breathing and close enough to my spine that it could have caused paralysis had I had not gotten the scan that I originally cancelled...because I didn't have the dinero at the time.

And that set in motion...another 2 years of agony....my 2nd lung resection with 7-wedge resections removed....followed by radiation to the lung, which destroyed another 10% of lung capapcity...and they even sawed out 2 of my ribs that they suspected had cancer growing inside of it.  And of course, chemo with the radiation 24-hours a day for 6-weeks....and then for grins, we pulled out one of the big bats (Folfiri) and hammered on me another 6-months.

Hooley's picture
Hooley
Posts: 153
Joined: Aug 2012

Did u have any nerve damage from lung op, or was it keyhole ?

smokeyjoe
Posts: 1428
Joined: Feb 2011

Craig,   folfiri is a big bat???    Sheesh, this is the one combo. that is my onc.s  "go to "   drugs for me.... he keeps remarking how well I tolerate it, I just want it to be effective!!!!   Now you got me worried Undecided   

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Yeah, it's one of the biggest ones we've got...Irinotecan aka Camptosar aka CPT-11 is a big weapon and considered one of the front-line chemo defense drugs we've got...Oxaliplatin being the new front line player, followed up close by Irinotecan....you could call them 1A and 1B. 

You know the rest....we mix in Avastin with either of those...and sometimes supplement the 5-fu pump or Xeloda as other adjuvants. The combinations of all those additives are what greatly contribute towards a potential path towards cure...instead of palliative treatment.

Once surgery clears the playing field, these are the main players that we use...which is why when we lose the effectiveness of those drugs, apprehension naturally begins to set in...one of the reasons it's important to not always be throwing the big guns in as "mop-up" treatments...it gives the body extra time to assimilate those chemicals and alter it's composition to where it is no longer effective...or the beginnings of it not being as effective as it was before.

I'm glad you are tolerating it, L...it was absolute murder for me...I want it to be effective for you....I can honestly say that despite the hardships I experiences, I feel it did play a role towards the current remissive state I currently find myself in.

Folfiri is a known tumor shrinker...if I've seen it once...I've seen it a dozen times...

Don't be worried, L...'cuz then you get me worried:(

This will bring a smile to your face...I'm about to start working on what will perhaps be the most important and biggest post ever...due out sometime this February...it won't cure cancer...but it's part of the cancer expeience...and you're sure to get something out of this....even if you never read another one from me!

Stay tuned...now turn that frown upside down Frown

It should look like this now...Smile

And here's the old-fashioned kind....

:)

LOL!

Hugs/C

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Yes and Yes!

Both times, there was nerve damage...one was the da Vinci robot surgery...the other was a full open thoracotomy with rib spreaders and all of that.

No way they can't beat you up doing those surgeries...nerves are everywhere and you should expect to experience some fallout as a result of the procedure...also, one could expect and to never fully or even partially recover from that after the nerves are cut.

Scar tissue combined with nerve damage are unfortunately the price that must be paid.  I'm living with it and doing okay...I've had 4-major surgeries and carry the damage done by each one of them....one is never truly better after doing any major surgery...only changed and different....the key is trying to overcome as much as you can to live as close to normal as you were before...if and when that is possible.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I did 12 tx of FOLFOX plus 10 tx Avastin, and then the neuropathy got bad enough that I stopped the oxaliplatin and have continued on (2 tx so far) with just 5FU + avastin.  My onc wants scans after 2 months of this "maintanance" chemo to make sure my tumors are still under control.  This will be CT scan number 5 since June 2012.

Tedd

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