Dr. does not seem worried but I do....

[Je9616]

Had my chemo on friday on folfiri and found out instead of my cea going down- they jumped a little more than a point. was at 10.2 now at 12.00. dr. does not seemed worried but i have stressed that CEA has been a good marker. when i got into the 20's is when they could finally see the tumors again- I have a CT scan and a PET scan set for next week- I have a feeling they will not see anything as i can tell my Lungs have been fine- when I got into the 20's is when i noticed a differance. I am so frustrated!! and if this Folfiri is not working what do i go on after that as i have done 5- fu??? a lot on anxiety

[raym]

I'm on FOLFOX so perhaps this does not apply, but my oncologist said that CEA can jump all over the place while on chemo.

[hannahw]

It's hard not to worry, but try not to borrow trouble. It just makes your now, your quality of life, less enjoyable. I've read many posts from people who have had their CEA go wacko during chemo. If your doctors apparent lack of worry doesn't make sense to you, ask him to explain his rationale.

[rachpach]

Hi Jennifer,
I was in exactly the same boat as you early may this year. I started on Folfiri chemo mid april with my CEAs at 265, they went down to 170 and then jumped up to 190 something from memory in the two weeks between. My oncologist was not at all worried (though I was!) He said its quite common to get a rise in the first few lots of treatment, like a flare up, before things start to go on the decline. He was confident with me, that this was what was happening, and he was right. They then dropped in two weeks from 190 something to 83! Their down now to 53 with only a drop from 57 in the past two weeks (because the folfiri doesn't seem to be nuking my primary as much as liver mets.) I wouldn't worry yourself..It might be similar to what happened with me, and I was told this "flare up" of CEAs is pretty common. Just think of the little suckers as having a final spazz before they die, thats what I tried to do! All the best

[CRguy]

Hey Je9616 "dr. does not seemed worried"...Hmmmmmm........if I may be so bold....

raym is right on, CEA does cartwheels sometimes on treatment.
hannahw's suggestion to open the lines of discussion has great merit.
rachpach's "Just think of the little suckers as having a final spazz before they die." reminds me of jmarie's visualization of the wicked witch from Wizard of OZ..." I'm melting...I'm melting..."
CRguy...told the onc "Nuke that little asshole back to the last millenium." (...the CRguy version of 'I'm melting..." )

Ok so we are ALL on board with you here, so now the good stuff. I have a good personal relationship with my docs. One once told me a "I wouldn't worry about that..." story. My reply : "Well Doc if YOU had the tumour...I wouldn't worry too much either. I DO have the tumour, so other than not worrying about it...what are we gonna do ?"
His reply : "Hmmmmm..Ok I see what you mean."...and we moved on to more follow up.

Just sayin' sometimes you need to chill a bit, and sometimes you gotta PUSH.

If you trust your docs, talk to them and let them know your concerns, accept that treatment will change things (like CEA) and if you feel they are not responsive to you, consider another opinion.

Sounds to me like things are moving ahead as expected....but YOU gotta feel that comfort zone too.

Cheers on the Journey
CRguy

[RixInPhx]

You are on Folfiri, and are Stage 4.
Why is Avastin not part of the regimen? it's pretty standard for Stage 4 to reduce further mets.

Was your prior regimen 5-FU alone, or Folfox (5-FU + Oxilaplatin)?

If you haven't had Oxi yet, that would be the next big gun to pull out of the arsenal.
If you are KRAS-wild, then Erbitux and Vectibix are also available.

Finally, the dosage rate for 5-FU is well-established.
The rates for Oxaliplatin and Irinotecan are also established by the testing protocols, but they have a 'subjectivity' factor for the oncologist to make adjustments based on how the onc thinks the patient will respond, and based on testing of the patients progress/side-effects.
For Iri, the 'base dosage rate' for single-agent treatment is 125mg/m2, and can be set by the onc at as little as 50 and as high as 150mg/m2; don't worry about the numbers, just understand that there's an allowable range.
Your onc *might* have started your Iri rate 'low', and thus is not worried that the CEA climbed a point or 2 (he might have been expecting it); if you tolerate this rate well in terms of side-effects, the onc could increase the rate to maximum strength.

For more about dosing, see: http://www.drugs.com/dosage/irinotecan. ... tal_Cancer

HTH, Rick

[Je9616]

Thanks for all the info. i am on avastin as well - forgot to mention that. I guess i just get tired of the wait and see approach as it did not benefit me last time.

CR GUY that is a good comment to make to the onc. i think they forget and just go through the motions. i guess the problem i have is that i have not been seeing my regular onc, as i can't seem to get an appointment with her. it is very irritating. and i am a planner- as in if this is not good what is next that we can do.

i have done oxy. and stopped because of the neuropothy. I suppose it is something that i can go back to. the issues are the lungs. The primary tumor is gone it is just those dang lungs- with multiple mets RFA is not an option. as you all know it just gets frustrating when you feel you are so close to getting this thing out, heres to hoping!! and to a good scan next week- thanks to all