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

[beach sunrise]

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!!!

[boxhill]

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.

[jts]

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.

[ANDRETEXAS]

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

[Zackattack]

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.

[CRguy]

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

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

[beach sunrise]

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?

[Zackattack]

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?

[beach sunrise]

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!