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Anyone in Stage 4 on maintenance or Chemo?

corkie00's picture
corkie00
Posts: 10
Joined: Oct 2014

Hello,

 

Hope everyone is wel.  Anyone in stage 4 on chemo or maintenance chemo?   Was on maintenance and now i'm going back on the regular chemo again cause my cea went up on maintenance chemo.   Anyone taking celebrix with xoada pills.   I'm dreading going back on the regular chemo, but at least i hope it will bring my number back down.  I'm hoping for after doing it twice in one month that I can move to just once a month the doc said maybe to see how it goes doing it twice a month first.

 

Any info would be great on how everyone else is doing.   All my other blood work is great and i have no pain or any other symptoms, but then again i never did.   Never even had a symptom,  i went in voluntarily to have a colonoscopy when my job was ending and i was loosing my insurance at the end of the month, thought my dad had a polyp that had cancer in it and he didn't, so thinking he did my sister and I got to have colonoscopies done before we were 50, i was 46, i just turned 50.   They found a polyp when i was 46 and he said no biggie took it out and two days later got the dreadful call that it was cancer.   That was in 2010 and it was stage 1 and it's been coming back ever since, now in stage 4 saw some nodules on my lungs but couldn't say it was cancer, too small, so decided to go back on chemo cause of the rise in my cea.   

 

What have  your cea's gotton up too?   

 

andy advise or just to chat would be great.

 

Carolyn

jen2012
Posts: 1607
Joined: Aug 2012

My husband was diagnosed stage 4 in August 2012.  He did folfox plus avastin til march 2013 and then surgery in April.  His cea climbed a little each month from June through sept but since it was still low the doc told us to not worry.  In sept 2013, he started having leg pain and the cea started to climb....still only 1.9 and they were chasing rabbits with bone biopsies that were negative.  In november 2013 , his cea was 79 and he ended up with a femur break.  He had several bone mets.  He have surgery on his legs and started folfox again in dec.  he did foul fox until April or May and then started on maintenance chemo in June.  He does 1000 mg of xeloda twice a day and avastin once every three weeks.  He may start the Celebrex too.  His cea jumped from .6 to .7  Still very low so I'm trying not to stress about it.

i think janderson is doing xeloda and celebrex still.

 

ha love auto correct....that's folfox not foul fox

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I was DX in Feb 2004. I've been in treatment (with the exception of a few short-ish breaks) for over 10 1/2 years. Mostly Erbitux and CPT11 but since last April/May I went on Xeloda. I contracted Lyme and had to go off the "stuff" for 2 cycles. My CEA had been going down but lately it's been slowly on the rise.

I get scanned Nov 5th, results the following week. I have a hunch I may have to go back to the Erbitux/CPT11 mix which I'm not looking forward to but all things being equal, I'm fine with it. While things could always be better, they certainly could be much worse.

CEA numbers vary so much that it's generally not a good idea to compare it with others. Mine have always been low and would be considered low to many other people. However, after doing this for a long time I've seen how an increase in MY CEA most often means that something is up.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Wife's been on light oral chemo for 4+ years with other off label inhibitors, see the bio page.  Nicer UFT isn't available in North America, so capecitabine (xeloda) is the default. She had elevated CEA and CA19-9 serum markers so she is on permanent cimetidine. She's done very well instead of being long done, she can still play the piano.  Like Phil, any component interruptions can be treacherous, notching up subsequent treatments with some celebrex.

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