Appt with surgeon

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

Appt with surgeon

Postby beach sunrise » Fri Oct 16, 2020 10:31 pm

Had morning coffee with my surgeon. We discussed many things. Biggest thing for him was first impression of PET/CT scan finding hypermetabolic mass. The hospital where he works will give a second opinion and I will find out early next week their impression. We are scheduling colonoscopy then a PET/MRI as follow up maybe to look deeper depending on colonoscopy findings. The PET/MRI is the only one anywhere in my area that high tech and might show more detail/answers than PET/CT scan I had done at cancer centers imaging dept. So, that was promising to me he had a plan right away.
If something is found he is onboard with immunochemo up until one week before surgery if surgery is an option. I was happy about that.
He knows the back story of how folfox failed and xeloda is working better all on its own in keeping CEA stable but not lowering it to where it was after surgery. It hovers consistently between 8 and 8.5. I am doing everything I can to see if it will go lower by adding supplements with the xeloda. Found out with some extra testing thru the ND just what helps kill the cancer floating around in my body so starting on those supplements. I still have hope :)

There's got to be a better way to know if chemo is working before it poisons a person first then find out way later it failed. I had my suspicions of it not working to kill the cancer by the 5th round but my questions were ignored and I did 8 rounds before deciding I have had enough, not doing 12 rounds, just give me xeloda, its the workhorse anyway.
Another thing we talked about was the microbiome and pre/probiotics. He recommends a BSL 3 mix (maybe he said VSL 3, I'll have to go back and listen to convo again, hmmm) that can be found in several different brands. So on the hunt for it now.
Also, if anyone has been taking the JHS-Mushroom Science brands that are out of stock until God knows when, I found a comparable in a brand "RealMushroom." They will even send you the Certificate of Analysis (CofA) for the batch your order came from if you request it.

My IL-8 is super high. He has no experience with it but thought I'd ask anyway for an opinion. The ND is knowledgeable but was looking for a second opinion. Does anyone have experience with high IL-8? I have been reading extensively on it and its pretty scary.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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