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What can we expect next???

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

I am a little nervous, my husband's last chemo cycle is tomorrow and he will have his first CEA blood work, hopefully. I thought he was to have one midway, but his onc said he likes to wait till last treatment. Can anyone tell me when he might have his first CT scan? I'm sure I will find out tomorrow, but feel maybe I would sleep a little easier if I knew tonight. Any info on what he can expect in the next couple of weeks would help alot. I want to thank anyone who could help. Margaret

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Hey Margaret, how many treatments did your husband have? I been getting them every 3 months, after maybe each 6th treatment, has he not had one yet? They usually take more then one?

Hugsss!
~Donna

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I find it odd that the ONC didn't want to see the CEA level going down with the chemo. I had my CEA done each visit and a scan about every 3 months. The scan is an idication if the chemo is working. I have a very agressive ONC.

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

Thank you for your info, also. I think that is why I am so scared for tomorrow, because we won't have any levels to compare this CEA test too. Can you tell me how long it takes to get the results of this bloodwork? Is it as quick as the tests you get before a treatment? Again thank you for your time. God Bless. Margaret

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I believe the standard followup is to have a CT scan every 3 months and bloodwork including a CEA test every month for the first six months. I normally get my CEA back 2 days later- for some reason it takes longer than the rest of the bloodwork, at least at my oncology office. They send the blood for the CEA test out, whearas they test the rest of it right there in the office.

How exciting that you're finishing chemo!!

Take care,
Lisa

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

My CEA levels have always remained at normal levels and we KNOW that is wrong.My doctors don't even take tham anymore.I am 4th stage metastatic colorectal cancer,diagnosed 9/2005.I have had folfox,avastin,xeloda and erbitux.About to start irinotecan.Anyone have any advice or can tell me what I might expect from THIS drug? The drugs have always gotten rid of the 'tumour of the month',but another pops up soon after some where else.

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

Thanks for your reply, Donna. This will be his twelfth treatment, he has had about 5 partial treatments because of low platelets and WBC. He has not had any CEA blood work yet, which I thought was used to see if the chemo is working. I am just really scared since we are together for 35 years now and I just don't want him to give up if his cancer comes back. Again thank you for replying so quickly, I do read alot of your posts to others questions, you are always so supportive and caring. God Bless you. Margaret

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

My husband completed all 12 of his Folfox with Avastin and 5FU the third week in October. He never had a reduction in chemo and only missed once due to port failure We had a CT scan last Friday and see the onc this Thursday for the results and where we go from here. As far as a CEA level, his was done once each month. His starting CEA in April was 594 and in September, was down to 35. Onc was very happy with progress last visit but as he said to us "I want more" since George resonded well to chemo. George's cancer was in the transverse colon. We had a CT at the start of this mess and our onc does one after the first 12 treatments. Some people get them every 3 months, we did not. We did have monthly one on visits with him and his PA where everything was reviewed completely. George is Stage IV. Best of Luck to you - Tina

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

what stage was your husband's cc at?

fighting for mom's picture
fighting for mom
Posts: 96
Joined: Jan 2009

Your husbands process sounds much like my mom's. She ended 12 rounds the 2nd week of July with CEA at end of .06----she just had her follow up CT and colonoscopy with an all clear. CEA was about the same- so all was good for her. She never would tell me what her CEA was before surgery.

Much like you, I was very concerned about them having waited so long for the follow up tests. She is not scheduled for another colonoscopy for 3 years. They will follow her every 4 months with CEA levels. I told her that CEA levels are not always accurate, which she knows.

It is just so stressful! I wish you both the best- I'll be thinking about you.

Susan

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

the stage makes the difference in followup on CT scan and CEA. I was staged a 3B in June of 08- I had surgery and 6 months of chemo ending in Jan 09. I had a CT scan before surgery and a PET scan before chemo- and not sure about the CEA before chemo. Don't remember.

The next testing- my colorectal surgeon did a CEA in Dec 08- she was doing routine testing before the take down on my colostomy. It was a 3.6 then. My oncologist questioned, "why did she do a CEA, I never do a CEA when a patient is still going through chemo as chemo can skew the results!" I then had a colonoscopy in Feb, the day before my take down surgery.

The next testing was a CEA in April, then a CT and CEA in June, a CEA in Aug, a CEA in Nov.

This is very standard for a stage 3 diagnosis: yearly CT scan and colonoscopy and CEA every 3 months. People are checked differently, but I think you will find the biggest difference in frequency of being checked is the stage of cancer at diagnosis.

CEA are sent to an outside lab, mine is usually back within 24 hours.

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

He was staged at Stage 3C. 3 cancer tumors, complete removal of colon, 4 lymph nodes affected. What I think really makes me nervous is that 4 people in my family have had some sort of cancer over the past 20 years and all 4 lost their battle. During his entire chemo treatments and for the past 8 months I have been very positive in my thinking, here it is the end of treatments and now I feel like I might fall apart and I don't feel that would be fair to him. So just being on this board throughout tonight helps, you are all so supportive and I appreciate all your replies. Take care and keep praying for a cure for all. God Bless. Margaret

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi Margaret
I guess we have a lot of different ways our doctors do things, and there are some standards that are used too. I never had a CEA done while on chemo, just after, about every six weeks, now after 4 years am down to every 6 months. Got a CT once a year. Colonoscopy every year for 4 years, now down to every other year. My CEA was only up to 7 with having a huge tumor and spread to overy and lymph, now stays around 3 to 4, so it was not a good indicator for me. From what I have seen here, CEA is probably not as important, or as good an indicator for some, as regular colonoscopy, and scans to make sure no spread. Hope all continues to go well for you and your husband. He will start to gradually feel better and better once the chemo is over, it does take some time, and it takes longer still to get strength and energy back, I am not the same as I used to be, but we age, regardless of whether had cancer and surgery and chemo, so I guess I'm not supposed to be the same as I was 5 years ago, but I'm mighty glad to still be here! Make your doctor tell you what the schedule for follow up will be and write it down, and if it doesn't seem that the follow up is close enough, make yourself heard. Sometimes we have to make the doctor slow down and really hear us.
Best of Wishes
Pam

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hi Margaret:

I'm stage IV and have been fighting this for almost 3 years. Every oncologist has their own preference regarding the frequency of testing. I have a scan happy oncologist -I've had so many scans I don't keep track of them anymore. On the CEA labwork he is more conservative. My last one was in August I believe and it was 834 or 843 - really way high off the chart. I asked him about repeating it now that I am back on chemotherapy and he wants to wait - mentioned something about my insurance - so probably in December we'll re-check this and see if it has come down as a result of the chemotherapy. My CEA has been high before so I'm not upset about this latest one. Your husband will probably have a scan scheduled soon and his lab re-checked. Try not to worry. I'll be praying for you and your husband. Take care. Roy

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

HI MARGARET, SORRY I WORK OUT OF THE HOUSE, AND HAD TO CUT MY RESPONSE SHORT EARLIER. AS TOUGH AS IT IS PLEASE TRY NOT TO WORRY, ENJOY YOUR TOGETHER TIME NOW. THERE IS NO TIME FOR WORRY, JUST LOOK ACROSS THE ROOM AT HIM AND SMILE. THAT ALONE HAS SO MANY HEALING POWERS.....
OKAY, I CONFESS, I WORRY TOO...ABOUT THE UNKNOWN, BUT I DO MY BEST JUST TO MOVE ON TO THE NEXT THING.

SO, CHEMO IS DONE, THAT IS A BIG ACCOMPLISHMENT!! I WAS DONE WITH MY 12 ROUNDS 5 WEEKS AGO AND SO THANKFUL FOR THAT BIG VICTORY. TOMORROW I GET MY PORT OUT, ANOTHER VICTORY.... CEA LEVEL WILL BE CHECKED RIGHT BEFORE I HEAD FOR CABO......HOPE IT'S A CELEBRATION. JUST HAD A SCAN DONE A WEEK AGO AND IT WAS CLEAN, ANOTHER WILL BE DONE IN 5 MONTHS. I CAN TAKE A VICTORY AT A TIME, YES, I CAN. MAKES YOU ENJOY LIFE AND APPRECIATE IT,

HAVE HUBBY EAT HEALTHY, GET PLENTY OF EXERCISE AND SMILE THROUGH IT ALL........ IF ANYTHING IT WILL MAKE THE YEARS THAT WE ARE HERE PLEASURABLE. WE JUST NEVER KNOW.

A BIG HUG.......RAQUEL

PhillieG's picture
PhillieG
Posts: 4883
Joined: May 2005

Hi Margaret, I hope the scans look great and he is responding well to treatment. Just my input on this. I've gotten scans every 2 months (for a long time...) Now, as far as CEA goes my Oncologist at Sloan Kettering does NOT put that much emphasis on the levels. It is by far the end all when it comes to telling her how a patient is doing, it's just a number that varies from person to person. You can have a high number and be doing OK and a low number and not be doing OK. The opposite is true too, a low number could be good. It's not an exact science, it's just a marker that gives them a rough idea of things. In some people a fluctuation can mean a lot, or it can mean very little. So....don't freak if the number isn't what you expect. The CEA isn't always a reliable measure of how someone is doing.

All the best
-phil

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

I have been undergoing chemo off and on for 4 years.I get a cat scan alternating with a pet scan every 3 mos. My cea levels have always remained normal.My doctor doesn't even take them anymore.They said it's not the norm, but sometimes tumour markers just don't show in the blood

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