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Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I called today to make my appointment to have my CEA checked next week. It is crazy that it can cause anxiety just like scans. It is hard to believe it has been almost 3 months already. And I hit a big milestone! I went the ENTIRE month of July without one medical appointment! And if all goes well, the only one in August will be my CEA labs.

I'm doing well, with the neuropathy in my hands starting to get a little better. My feet are still pretty bad. My hair is filling in - much thicker again, but at the length it is getting to, I have "wings" that look a little funny. I'll live with them till they grow out - it's either that or buzz it very short. My biggest worry when they first told me I had cancer was my hair falling out - ha! Now it is one of the funny things we joke about - especially since it wasn't supposed to fall out as it did on FOLFOX. I've been cooler this summer with less hair too. I'm still battling more fatigue than I expected. And I still have this darn sore tongue - weird.

The strange thing that has me a bit worried is I am losing weight. I'm eating plenty, and had a clear colonoscopy. It doesn't really make sense. I have had some GI issues since my colonoscopy, but it hasn't been constant diarrhea. It won't hurt me to drop up to 10 more pounds, but after that it becomes an issue. I'm not back down to my lowest on chemo yet, but I've lost most of what I was able to put back on once I was done. Normally I'd be thrilled about this, but paired up with the fatigue that just doesn't seem to be getting better, it has me a bit scared. For now I just have to push it all out of my mind, and not worry about it till later. I won't know anything till the 13th at the earliest. We have a big family reunion coming up to enjoy, and my son's 18th birthday too! The results will be what they will be, and chances are I am still doing great as far as staying NED.

Did anyone else have unexplained weight loss or fatigue they just couldn't shake a few months out from chemo?

tootsie1's picture
Posts: 5056
Joined: Feb 2008

I didn't have chemo, so I can't answer your question about that, but I do pray you will have excellent CEA results. I know it makes you anxious. It gets everybody! Doesn't it feel good to not have to go to medical appointments so often now? *smiles*


Posts: 827
Joined: Jan 2010

Kathryn, I have been off chemo since May 11th. Colonoscopy ok in April. CEA level good on July 13th. Scan set for August 23rd. And the answer is yes. I have lost about 12 lbs since middle of June. I am under my pre-surgery weight. I am also having some strange things/symptoms including fatigue. I have chalked it up to too much work & stress with my Mom's illness but I am starting to get a little uneasy because it seems to be getting worse...whatever it is ...and I am dreading the scan.Probably just paranoia on my part.. I hope. I was dx'd stage II

Wishing you very good results on the 13th.


Annabelle41415's picture
Posts: 6531
Joined: Feb 2009

Ahh the dreaded tests. As far as the weight loss, not sure why you are dealing with that issue. Could it be that during the summer you are much more active and therefore burning up the calories? Good luck on the CEA test. Just got mine back and they were good but always hate the three month blood test. My white/red blood counts still aren't up to normal even since being off chemo the end of September so fatigue is still there for me. Still having problems with neuropathy as well and just asked oncologist on Thursday for another script. Seems like its one thing or another. Good luck with the upcoming tests.


Posts: 3692
Joined: Oct 2009

with the CEA test. I am happy to hear you are good overall. I don't know about the weight loss + fatigue after chemo; I am still undergoing treatment. It is nice to have events like reunions + birthdays to look forward to. Waiting is always difficult.

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

My oncologist's office called today. I do have to see him, as well as have CEA and other labs done. I thought it was only labs and scans as long as nothing bad shows up. But instead I will see him every 3 months no matter what.

So it is labs next Wednesday (not this week), and oncologist on the 27th. I'm sure they'll let me know my CEA results before the appointment. I can always move up the appointment if I drive to the further office, but I see no need unless my labs aren't good.

abmb's picture
Posts: 311
Joined: Sep 2009

My husband's onc does the same thing. CEA every 3 months and a week later he sees the doc. Good way to get any questions or concerns taken care of. Margaret

abmb's picture
Posts: 311
Joined: Sep 2009

My husband has been finished with Chemo since November 2009 - still will fall asleep sitting in a chair in mid-afternoon. The one afternoon, just this past weekend, he was sitting in the recliner and while on the laptop just fell asleep. I took the laptop from him and he woke up an hour later. Sometimes it scares me how fast he will just fall asleep, but I have learned to take one day at a time. Just happy he is still NED. Funny thing is, he wants to know why I don't let him drive!!!!!! Margaret

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Good luck from me also. Give us a post when you get the good results. Best to you, Paula

Posts: 372
Joined: Aug 2006

It's called stress. Silly isn't it we can taste it and rarely notice it but it can do some really strange things to us. Nothing more stressful than those tests except waiting to get them and then waiting on the results. Wish you the best

John23's picture
Posts: 2140
Joined: Jan 2007

I had my operation almost four years ago. They removed over
four feet of colon, my gallbladder, and apparently anything else
that got in their way during the operation.

They staged me at a 3c..... another oncologist said I was a 4,
and gave me 3-5 years if I did chemo; -0- without chemo.

I didn't do chemo....

After almost four years, and remaining NED, I still go through
periods of extreme fatigue. I'll fall asleep standing up, if I'm not
careful. There are times that I have trouble staying awake during
conversations...I can fall asleep while talking on the phone...

I figure that it's the extreme shock to our system - to have so much
going on in our abdomen..... it interferes with our digestion, and
that interferes with the amount of energy we have available.

Of course for me... I have an ileostomy, and get up three or
four times a night to empty the stupid thing.... that alone can
add to fatigue, since it's an incomplete sleep pattern.

But I wouldn't be too hasty to blame the fatigue on the long-lasting
side effects of chemo; I would think it's more to do with the invasive
surgery, and the repercussions of having our insides disturbed in
the manner it was.

My wife bought me "Ensure Plus", and I put weight on fast!
I was 180 going into the hospital, 110 coming out four+ weeks
later, and got back to 170 again within a few months. (I should
be about 130)..... But between the Ensure-plus and Krispy-Kreme
doughnuts.... it was a grand way to gain weight!

Not to worry gal, just eat more junk food!


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greybeard64's picture
Posts: 254
Joined: Mar 2010

I had big time weight loss, for a few months after chemo, and definetly fatigue. Through the course of all this I lost over 60 lbs. I went from 182lbs to under 120lbs. I seem to hover around 165 now and from what the surgeons and my Onc tell me I will never see 180lbs again. I guess they took enough that I do not absorb as much of anything as I use to. I am gaining strength again though and the fatigue while it has lasted way longer then I would have thought is getting better, very slowly!! but better none the less. I wont tell you not to worry, that is always easier said then done, but from here it sounds pretty normal. I agree with John, eat alot of junk food, lol. My Onc actually told me when I ask about the weight to start eating ice cream, and in his words, "the good kind, with alot of fat." now that is a perscription I can live with. he also told me to take fish oil, probably to counter act some of the effect of all that fat intake with regard to the heart. anyway here's to eating that second piece of pie under doctors orders none the less!!
hope this finds ya smilin

Posts: 7
Joined: May 2010

i am 4 years post treatment. i still have days of fatigue, muscle aches, etc. it goes with the territory. i just keep putting one foot in front of the other and don't think about it. if you had radiation, a lot of the "after effects" that are around this far out (4 years) are as a result of being radiated, not chemo. chemo effects clear up, but there are latent effects of radiation that stick around.

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