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Diagnosed at 34 with stage 4 colon cancer. Been battling for a 11/2 years. Need Help!

Christi W's picture
Christi W
Posts: 1
Joined: Jul 2015

Hi everyone! Someone please help me understand more about the CEA & how accurate is it? 

Trubrit's picture
Trubrit
Posts: 5046
Joined: Jan 2013

I am sorry that you have the dreaded CRC. 

CEA is, I believe, for the most part, a reliable marker for many CRC patients. But, there are others, and some here on the forum, who have high or fluctuating CEA numbers, and have no tumours visible, so thus, it is not reliable for them. 

For me, I beleive the CEA is reliable. When I had an tumour grow in the liver, my CEA rose by leaps and bouncs and I was able to get it taken care of.  I am grateful that it works for me and pair that with CT or PET Scans, we can keep an eye on what is going on inside my body. 

What kind of treatment have you had so far? Did you have surgery? Let us know a little more about you, and how we can help.

There are many here who can help you as you travel this path. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

Sorry you are here for the obvious reason, but this is a great place to be for the people.

There is some discussion on how valuable CEA is as a diagnostic tool, for some people it indicates issues, for others not so much.

There are various factors which can affect things, such as smoking and other items, including death of cells or just chemo in general.  Your Doctor may be able to give you an indication if it seems to track your condition.  Some recent threads are below about CEA and there are good discussions in there.  The most my CEA hit was 8.1 right before surgery and it is going up and down.  There were people here who had some extreme CEA levels (at least to me, based on my numbers), in the hundreds or higher.  I thought there were typos.  

Anyway, welcome again and try not get too worked up about CEA.

http://csn.cancer.org/node/294922

http://csn.cancer.org/node/294571

http://csn.cancer.org/node/294392

http://csn.cancer.org/node/294440

db8ne1's picture
db8ne1
Posts: 141
Joined: Feb 2013

My CEA was 1.0 prior to any treatments for Stage 3 Colorectal cancer.  It remained 1.0 throughout chemo/radiaion, after surgery to remove the tumor, and throughout follow-up FOLFOX.  Last chemo was October 2013.  Other than a secondary primary cancer (renal cell carcinoma) and partial nephrectomy in July 2014, I am currently NED.  Every single CEA returned a result of 1.0 for me - over a 2 year period.  As such, I'm not doing bloodwork to measure CEA anymore - just CT scans and colonoscopies.

That said, if your CEA does vary, it might well be a good indicator to watch.  Rising CEA can indicate tumor growth (although it can indicate other things too, like infections, etc).  Your post didn't indicate what your CEA counts are/have been.  I'm sure if you ask your onc you can get a clearer answer to your question.

Hoping for the best for you!

J

 

Fatherjohn
Posts: 14
Joined: Jul 2015

Hi db8ne1

I am a 45 year old father of two young girls. Had surgery to remove sigmoid colon tumor two weeks ago - no chemo needed first. I" ve healed quickly and am preparing for Foflox 6 month cycle. I'm active, healthy, non smoker, light drinker (none anymore), no diabetes, .... just trying to anticipate chemo effects and possible outcomes come the end of my 12 treatments....?

galveston1
Posts: 3
Joined: Jul 2015

my hubby just had his first treatment with folfox 6.  he was diagnosed 4/28 and had surgery to remove sigmoid colon on 5/11.  he didn't experience any side effects except the unpleasant effects from trying to drink cold apple juice.  they told us oxiaplatin causes this but since no other side effects he thought maybe he could also drink cold beverages ... NOT!  It didn't really hurt he said, felt like swallowing potato chips that weren't chewed up properly.  the next day he wanted to try again and I told him "no, if you want something that will hurt you, you must get it yourself".  So we were there about 5 hours, takes longer the 1st time as they have to educate you, etc. and they give it slower the 1st time.  Lydocane would have helped as the most painful thing was the numbing shot for the port.  Next time, we have a prescription for lydocane and it will be numb when we go.  You might ask for this advance.  So we went on a tuesday and then sent home with a pump and little round countainer that looks like a bomb, they in fact, called it a bomb.  The first night we were concerned because after 10 hours it didn't seem any fluid had left the thing and he felt so well he didn't think he was getting the medicine.  we made some frantic calls and they basically told us if it isn't leaking don't worry about it, if it leaks come to the ER.  Long story short, the thing SHRINKS as the medicine is pumped out; no one had told us so we didn't know what to expect but was obvious the next morning when it was half the size!  Disconnect day, he still felt good; then they had to infuse him with iron because red blood cells abit low after surgery.  the iron made him ill and tired ... big surprise for us!  Then, when we got home he was nauseated so he took some of the anti-nausea meds, compazine (but the generic name); he got fever and we think it came from this anti-nausea drug as it is listed as one of the side effects.  Further research of this prochlorperazine, the actual generic name for compazine, revealed that it is also used as an anti-psychotic and similar to thorazine!  Alot of people like it and do quite well with it's anti-nausea properties, but also can make you quite tired.  We will request another anti-nausea drug in the future after adverse effects on hubby.  Today is day 4 and he is sleeping, the fever broke in the middle of the night and we actually were told to go to the ER but hubby didn't want to.  I hope this helps you in some way; this is a new frontier for us and just wanted to share info on how the first treatment went with folfox 6.  He is receiving 85 mg. of oxiaplatin per so much body weight which with him comes out to 2 x's 85 mg. 170.  The usual dose is 100 mg. but doc says it does the same thing so reduced the dose abit.  Hubby had adenocarcinoma micrometastasis in 1 lymph node out of 16.  God bless and I pray that you come out of this stronger and better than ever.  I have read alot of good things about folfox 6 and that oxiaplatin kicks cancer's behind.  You are young and should do great!  hubby is 65.

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