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CEA steadily rising, new chemo Irinotecan

herdizziness's picture
Posts: 3642
Joined: Apr 2010

Well, as I thought, the CEA is steadily keeping up it's rise, up to 24 this week, so onto Irinotecan every two weeks. New chemo for me. This sure bites, but what is one to do?? Oh, well, onward to fighting it a bit more.
Winter Marie

PhillieG's picture
Posts: 4912
Joined: May 2005

I've been on that along with Erbitux since 2005-06 and maybe that's part of why I'm still here.
Who knows? Best of luck with it.
Don't be surprised if you get some stomach cramping. I did/do but it's manageable

maglets's picture
Posts: 2596
Joined: Jun 2006

Hi girl....sorry about that rising number. Never been on that chemo just wanted to say hi....thinking about you Winter Marie....sending a big hug


johnnybegood's picture
Posts: 1122
Joined: Oct 2008

sorry you have to use the big guns but thats the way this rollercoaster rolls.i have been on that plus avastin.for me it sure wasnt as bad as the oxy,my hair did fall out and over time i had bad stomach cramps and mild diareah.for some this drug is very rough but for me i tollerated it ok.good luck and keep us updated on your progress....Godbless....johnnybegood

mukamom's picture
Posts: 402
Joined: Oct 2010

did pretty well on it...hair loss, nausea, fatigue. He did manage to swap out a motor in his truck while on it, in the heat of an Alabama summer.
As an added bonus, it worked!!!

Hope it will do the same for you.


Momof2plusteentwins's picture
Posts: 508
Joined: May 2012

Sorry about the rise in CEA, I hope this new combination works for you.
Sandy :)

wolfen's picture
Posts: 1328
Joined: Apr 2009

Really bummed about your CEA, but glad there is another weapon in your arsenal. Hope it is not too tough to tolerate well.



Posts: 1428
Joined: Feb 2011

Winter,  are you getting Folfiri with avastin ..... or irinotican with avastin?   Are they leaving the 5FU out of the mix.   I did folfiri and tolerated it quite well,  had fatigue mostly as the side effect.     Make sure you have loperamide on hand just in case you need it.   I've heard you can get early onset of diarrhea   or  a late onset after a few days it hits....as we all know everyone is different  and you'll just have to see how your tummy responds.    Hope you have minimal side effects and tolerate it well.   I'll be back on it in Jan. as far as I know......I got a calendar with my appt.s from onc. and I have a treatment scheduled on it.

wawaju04976's picture
Posts: 316
Joined: Dec 2012

I just read your story, and you are an inspiration. I am sure you're going to kick cancer's *** again!!!



Posts: 1170
Joined: Sep 2012

My husband is getting it for the second go a round. For him the side effects are very minimal. His issues (fatigue) are more likely from the 5 Fu. No nausea, diarrhea etc... Hope you will have an easy time too.

Merry Christmas,


Annabelle41415's picture
Posts: 6692
Joined: Feb 2009

Sorry it's rising. Was so hoping that what you are on is taking care of it. Maybe adding something new will help though like Phil said. My thoughts and prayers are with you for a new plan.


k44454445's picture
Posts: 494
Joined: Jul 2012

been on it as a part of folfiri.( i have completed 11 out of 12 tx) i have tolerated it really good. the 5fu does drain me & in oct i ended up in the er bc the wbc crashed. my onc said it was bc of 5fu. you should do ok on it. good luck!

belindahill's picture
Posts: 144
Joined: Jan 2011

Hi, I hope you cope well with the side effects. My husbands cancer has had mild progression, he should have started Irinotecan, Avastin and xeloda on the 12th but took a risk and posponed it untill the 3rd of Jan. Have heard that this is a very hard drug to take, hoping it goes well for you, and with good results.

JayhawkDan's picture
Posts: 206
Joined: Apr 2012

I've been on it as part of folfiri since the start of this "journey" in February. So it's difficult to determine what drug is causing which side effects. I've had 18 rounds with it and will continue for the foreseeable future (as long as it works). But what others have said is about right. Diahrea -- constipation -- sometimes at the same time, sort of. Didn't lose my hair, but it thinned, got kinda lifeless, then came back pretty strong, but different...sort of wavy. My barber of 24 years who has become one of my bests friends, said that technically they call it "oughtabeen" hair. "Oh," I said, taking it hook, line and sinker. "Yeah," he said, "it oughtabeen on a dog's ***." Laughed my *** off. He's one of the few people that isn't uncomfortable when I joke about my cancer and fate. Keep us posted on how you're tolerating the I-run-to-the-can, as they call it. Christmas hugs, Dan

dmj101's picture
Posts: 527
Joined: Nov 2011

Hi Marie, Sorry you cea is rising. I was on Irenotecan not too bad.. diarehea and constipation depending on what they are giving you along with it.. like steriods. and such...
Irenotecn will make you loose hair.. I lost most of mine..
the Side effects occurr over time.. don't expect them to all him immediatelhy.
Are you on any other drugs along with the Irenotecan?

Good Luck Marie, hang in there.. 2013 will be a better year for us all.. (that's my story and I am sticking to it.. )

Dyanclark's picture
Posts: 296
Joined: Apr 2012

My husband had his first Irinotecan Tuesday, he had pills for nausea and we have immodium on hand. He is using about 1/2 immodium a day. He is not doing half as bad as I was afraid of, sleeps good and he is eating pretty good not a lot. He will go every 3 weeks for drip and is also taking 6 Xeloda pills a day along with Erbitux. Keep us informed on how you are doing.
Dyan & George

annalexandria's picture
Posts: 2573
Joined: Oct 2011

Really wish you didn't have to do this, Winter Marie. Just have to hope that this one will do the trick, kick cancer out on its *** once and for all. Hugs~AA

Doc_Hawk's picture
Posts: 685
Joined: Jan 2012

It sure helped out when I first started on it. My WBC count had been pretty low but it stabilized when I started on it. I'll pray that you have great results on it, Winter!



pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

dear winter,
I pray whatever you try works for you, so I really hope this helps.

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

It was a 2'fer for me...one one hand, it nearly killed me...with the other, it undoubtedly dried things up in there:)

You'll probably swallow it whole...and ask for seconds:)



Varmint5's picture
Posts: 384
Joined: Feb 2012

Winter Marie, I am so sorry to hear your CEA is rising, but glad you are going to be getting Irinotecan. It is kicking cancer's butt for my daughter and I hope it works as well for you. You can beat this back down again. You'll be in my thoughts and prayers!


herdizziness's picture
Posts: 3642
Joined: Apr 2010

For your words of encouragement.  Wink 

So far I had diarhea right after getting home, then it went away within an hour.  This is day 4 and am as of last night the second bout of diarhea, but not bad at all.  I feel no different, not tired or anything.  Hopefully this will keep up and I will do well on this new chemo.

Presently I am just on Irinotecan for the time being, I'm worried about hair loss, but if it goes, it goes, as long as I stay!!  LOL.

Winter Marie

westie66's picture
Posts: 642
Joined: Jun 2010

HI Winter Marie:  Good luck with the new treatment (but I'm sorry you have to be on it).  I had irenotecan plus oxaliplatin plus 5FU for 14 treatments.  It was nasty (diarrhea) but

I survived it and it did appear to work.  My hair did break off but has come back thicker and somewhat curly.  And I lost a lot of weight which was good for me.  Merry Christmas!


aggie0053's picture
Posts: 110
Joined: Mar 2011

sorry winter hope everything will be back too normal real soon

pepebcn's picture
Posts: 6352
Joined: Aug 2010

Feel so sorry about the news but Irinotecan is been best drug I had until now! And manageable!
Hugs dear Sis!

LivinginNH's picture
Posts: 1458
Joined: Apr 2010

Hi Winter Marie,

I just wanted to say that you're in my thoughts, and I'm hoping for good results with the new chemo.

Hugs (()),


geotina's picture
Posts: 2122
Joined: Oct 2009

George was on this drug (no 5FU) for more much more than a year.   It worked very well for him.  His CEA went down, down, down.  He did get horrible diarrhea so heads up on that one.  Put a towel under the sheet on your side of the bed just in case it comes on suddenly at night.  Craig had told me that this drug was very hard on the kidneys and in the end George had  renal failure so heads up on that one.  If you notice your urine output drops even though you try and stay hydrated,  mention it to your docs.  I wish George had known this sooner.  He also experienced complete hair loss, legs, head, eyebrows, all of it and it came out as soon as he started this drug.   I don't wish to scare you but you are one tough lady and I feel you would want to know what may or may not happen.  This is also the drug that Cliff (Buzz) started and then quit after one or two treatments, he just could not do it.  Most people handle this drug quite well but George would say Folfox was a walk in the park compared to this one.   He didn't have nausea.  He was able to work while taking this drug but would experience fatigue.   If you want to know anything else, send me a pm.

Love and Hugs - Tina

barbebarb's picture
Posts: 464
Joined: Oct 2011

Hoping you are feeling ok and this treatment helps you.
I will be dealing with radiation next and possibly chemo for the liver after brain treatment. Of all the surguries it was a walk in the park.
I'be been an emotional mess all week. Trying to accept what's to come and the fact not another surgery (have had 4) this year.
Anyways, this is about you and you are in my prayers and I know a strong fighter.
Keep us posted! We need you!

LivinginNH's picture
Posts: 1458
Joined: Apr 2010


Posts: 1961
Joined: Aug 2003

I've aso had some deterioration and moving to a new chemo -- irinotecan plus Avastin plus Xeloda. I've actually been on all 3 before. But I'm on a higher dose of Irinotecan this time. Had a bit of a rough time with my first cycle (diarrhea, vomiting - lost 5 lbs!) but my onc is going to up my antiemetics and is giving me an appetite stimulant. I'm optimistic. I'll prob loose my hair (again) but I don't care. 


herdizziness's picture
Posts: 3642
Joined: Apr 2010

Good luck with the new chemo, hoping mine does well too.

Yep, guess we all learn we can live without our hair for a while.  Had my party today, lot's of laughter and love!!!

Winter Marie

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