Update (9 months post surgery) (6 months post chemo)

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beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby beach sunrise » Mon Jun 29, 2020 2:48 pm

I had it done to pair with AFP, CEA and CA19-9. I used it to see a broader pic of inflammation, liver, peritoneal. My inflammation markers are high. Onc won't budge on celebrex but there are other ways to skin a cat with that one too. I went to my surgeon this morning about the inflammation to address it. Onc won't be happy but hey who cares about his feelings.
I am very happy for you to be cancer free!!!
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

boxhill
Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: Update (9 months post surgery) (6 months post chemo)

Postby boxhill » Mon Jun 29, 2020 7:20 pm

CEA isn't a marker for me, and I've never had CA-19 tested. I asked about it at some point and was told it is used for pancreatic cancer. It wasn't a burning concern for me, so I didn't pursue it. I've also never had a PET scan. Quite possibly because anything that has shown up on another scan was always too small to reliably be seen on a PET scan.

If I were you, I would be agitating for more frequent than annual scans rather than a CA-19 test. Or at least punctuate them with periodic liquid biopsies.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

jts
Posts: 40
Joined: Sat Aug 24, 2019 3:07 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby jts » Tue Jun 30, 2020 4:05 pm

Thanks for the update. You were about 2-3 months ahead of me in getting surgery, and your posts about your recovery and start of chemo helped me at the time.
Male 42 — stage IIIc
DX starting 08/2019
6 cm long tumor, 5cm above anocutaneous line
Clinical: T3 N1 M0
09-10/2019 Chemo-radiation, Capecitabine
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
Jan-June 2020 - 12 rounds FOLFOX
CEA only goes up during chemo: 2.4 --> 5.4

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ANDRETEXAS
Posts: 643
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Update (9 months post surgery) (6 months post chemo)

Postby ANDRETEXAS » Wed Jul 01, 2020 12:14 am

Congratulations on your son and your positive results.

I kept my port in for a year ---- just worked for me psychologically.

I understand your not wanting to visit so often to the forum as you had and have other things on your mind. I don't visit quite as often as I once did, but I like to see if I can help others, and visiting when I do helps me appreciate my recovery and count my blessings. I've learned through all this to take nothing for granted.

Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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Zackattack
Posts: 49
Joined: Mon Jul 15, 2019 4:28 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby Zackattack » Mon Jul 06, 2020 10:44 pm

Hey Andre! Happy to hear from you and so glad to see that you're continuing to be well.
Hi jts -- I remember reading your posts and am happy I could help you in any way -- feel free to reach out anytime if you have any questions or want to chat!
Hi boxhill -- thanks for the reply now and also during my prior posts, glad to hear from you!

So I begged my Dr to run CA 19-9 during my televisit and she actually signed off and it was run with the rest of my labs. CEA 1.4, CA 19-9 I think was ~14-16. Kept the port because I agreed with the consensus here to just get another scan or two under my belt first.

Got a chance to spend time with my family and a couple of friends for July 4th and it was really great to just feel totally free of the disease during this moment in my life and fully healthy.

Physical:
In my general life, I have switched to Vegan diet the last many months (lost count ... 6+), cheating only a few times per month. I take a bunch of supplements every day (mostly herbal) which I can get into if anyone is curious. Today I went for a nice run and also have been working out a few days a week again (hard to find time with a baby).

Mental:
I went to a therapist a few times when I had my January CAT scan on the horizon, I also had a swollen lymph node for months in my neck at this time. The Scanxiety was REAL. I couldn't relax or enjoy things when I felt it looming. After everything checked out okay, (neck was 'reactive' -- maybe from smoking marijuana) -- I stopped going to see him because I felt like I could deal with life using this forum, my friends, and wife as support and started to rebuild a sense of normal life.

So that's where I'm at right now -- grateful for this moment of hope and peace. We'll see what the world brings but I'll keep trying to move forward, making each day greater than the last. Hope this can help anyone, feel free to reach out in a private message or here.

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CRguy
Posts: 10179
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby CRguy » Tue Jul 07, 2020 12:03 am

Hey buddy just an FYI and NOT trying to piss in your cheerios !!!!!! :shock:

IF the enlarged node is in the left shoulder/neck area around the collar bone .....
despite what any other tests show
GET IT CHECKED again !!

you had rectal CRC ( =ME also )
AND there are certain nodes which seem to show issues for us rectal folks
they are called Virchow's nodes and are a diagnostic sign that more imaging and follow up should be done

WORD !
Knowledge IS power, and that is something we all need
we NEED to know !

BTDT buddy and just sharing so YOU do NOT have to be !!!!

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby beach sunrise » Tue Jul 07, 2020 12:15 pm

Yes Yes Yes, what CRguy said!
Are you using a naturopath for your supplements/diet? If so, who and what supplements are you taking if you don't mind sharing?
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

User avatar
Zackattack
Posts: 49
Joined: Mon Jul 15, 2019 4:28 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby Zackattack » Tue Jul 07, 2020 9:59 pm

beach sunrise wrote:Yes Yes Yes, what CRguy said!
Are you using a naturopath for your supplements/diet? If so, who and what supplements are you taking if you don't mind sharing?


The node at my jawline/under ear was on the right side. Sloane Kettering looked at it and ran a CT scan and wasn't worried at all -- just monitoring it.

I am not using a naturopath. Mostly acquired information from here and other places on the internet to create my own expensive pee (as my wife calls it). Who knows if anything I'm taking helps, but on the off chance that one of the things I take daily helps even a little, it is worth it to me.

I am not a Dr. so take what I say below lightly

So here we go:

Tumeric/Curcumin 1800mg 2x a day
Vitamin D3 5000IU 1x a day
Psyllium Husk Fiber 1500mg 2x a day
Probiotic (50 bil CFU) 2x a day
Cimetidine 200mg 1x a day and 100mg 1x a day
Omega 3 6 9 1000mg 2x a day
Resveratrol 1450 2x a day

Also interested in taking PSK mushroom but I bought the powder and hate to mix things. Capsules are way better for my liking.

Most important I feel would be the D3. Does anyone else have anything else they take? Aspirin low dose? etc?

User avatar
beach sunrise
Posts: 121
Joined: Thu Mar 05, 2020 7:14 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby beach sunrise » Tue Jul 07, 2020 10:55 pm

I agree D3 is very important.
We have 3 supplements in common.
I do take a 81mg aspirin every night and melatonin.
Thank you for sharing!
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."


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