CEA Levels

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Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Mon Apr 15, 2019 5:39 pm

Well my hair is officially falling out all over the place. this didn't happen much on FOLFOX. It thinned mostly. I guess I will keep it on and not shave it off yet. I have 2 more treatments. Pyro (The devil's lettuce is hilarious)...

I don't really care at this point regarding hair, I just want to get cured. Cancer can be so depressing and I have my moments. Mostly though I stay positive.

Rikimaroo
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Punky44
Posts: 293
Joined: Mon Oct 01, 2018 4:29 pm

Re: CEA Levels

Postby Punky44 » Mon Apr 15, 2019 7:04 pm

Hang in there! My mom’s hair seemed to start thinning after FOLFOX and kept doing it two months out so we finally just got a wig and it was the best decision ever.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

stu
Posts: 1088
Joined: Sat Aug 17, 2013 5:46 pm

Re: CEA Levels

Postby stu » Tue Apr 16, 2019 1:28 am

You are a good responder to treatment so I am holding out for significant shrinkage and your treatment plan to be put into place .

My mum had hair thinning . I noticed a rather thin area still in the mix the other day . Got a bit creative !!

I don’t blame you for feeling down , you are only human .

Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Tue Apr 16, 2019 8:17 pm

Thanks guys. I am doing FOLFIRI not FOLFOX, but when on FOLFOX my hair thinned. FOLFIRI makes you actually lose a lot of hair, possibly all. Yes I am responding to the treatment, but it makes me very sad that I am going through this again, even though I know people have been through and got cured. So reading some of the posts on here have helped a lot. One of the nice things is I am doing more juicing, I had celery juice with a granny smith apple this morning and eating some sprouts raw. More greens.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Caat55
Posts: 655
Joined: Sat Dec 23, 2017 6:01 pm

Re: CEA Levels

Postby Caat55 » Tue Apr 16, 2019 10:27 pm

Rikki,
Glad to see your numbers are turning back down. I can't imagine the frustration of tackling this again. Heading into my reversal on Thursday. Wishing you good luck with final doses.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Tue Apr 16, 2019 10:44 pm

Caat,

Good luck on your reversal. With all the stress of recurrence dealing with unpredictable bathroom runs it’s been quite stressful. Sometimes I wish I had my bag back because it was easy and I can do anything.

Now I feel tied to the bathroom and am afraid to go anywhere worrying I will be stuck in the bathroom for 30-40 minutes.

I am sure it gets better after couple years. I have pooped myself as well. It’s been about 6 months since reversal so it’s still fairly new. I don’t want to get my bag back but if it makes my life less miserable I would. Let’s see how the rest of this year goes.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Tue Apr 23, 2019 11:34 am

Caat55 wrote:Rikki,
Glad to see your numbers are turning back down. I can't imagine the frustration of tackling this again. Heading into my reversal on Thursday. Wishing you good luck with final doses.
S


How is your reversal surgery and how are you doing?
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Caat55
Posts: 655
Joined: Sat Dec 23, 2017 6:01 pm

Re: CEA Levels

Postby Caat55 » Tue Apr 23, 2019 11:56 am

Rikimaroo wrote:
Caat55 wrote:Rikki,
Glad to see your numbers are turning back down. I can't imagine the frustration of tackling this again. Heading into my reversal on Thursday. Wishing you good luck with final doses.
S


How is your reversal surgery and how are you doing?

Home four days now. Early hours of morning are bad, 5 to 7 trips. Day times easy so that’s good. Stopped most pain meds, came home with gabapentine and Tylenol . Did take two Tylenol at 2 a.m., helped with bum pain. I am walking a bunch about 7000 steps. Swelling in belly is down. Wound looks okay, covered with just gauze so doesn’t catch on clothes.

What about your numbers, scans ?
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Tue Apr 23, 2019 12:28 pm

My cea is now 8 from 16, from 22..so the chemo is working. It is hard doing chemo, sometimes I just want to give up. One more treatment on May 1st then I will schedule scan (PET) to see what the next steps are. I really need to cure this thing.

Chemo really causes your butt (anus) to not heal after pooping so I get some butt burn from that. Been having some decent blow outs, which is good, therefore I only go 4-5 times a day. Or sometimes 2 if god willing.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Caat55
Posts: 655
Joined: Sat Dec 23, 2017 6:01 pm

Re: CEA Levels

Postby Caat55 » Tue Apr 23, 2019 1:15 pm

Chemo is awful in many ways. I noticed my irradiated skin got bad during it, must be awful for you.
Hold tight, you are almost through it. We are all praying for you.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

User avatar
susie0915
Posts: 923
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: CEA Levels

Postby susie0915 » Tue Apr 23, 2019 1:53 pm

I had my reversal before doing chemo due to a blockage 4 weeks after my resection. Surgeon had to do surgery to remove scar tissue so reversed my ileo at the same time. It did make it difficult during chemo with loose stools. My oncologist to prescribe cholestyramine which did help along with immodium and lomotil on bad days. It is a powder you can put in juice or water. It is used for high cholesterol but works for diarrhea as well. May be worth trying. Good to hear your CEA levels are coming down.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5


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