CEA Levels

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Rikimaroo
Posts: 184
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: 269
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; CEA dropped to 6.2
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes

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

stu
Posts: 1046
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: 184
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: 606
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: 184
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


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