Doing a 180 with oncology

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beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Doing a 180 with oncology

Postby beach sunrise » Tue Nov 24, 2020 12:56 am

Update on me: Trying to break up sweetly with my current onc and he's making it hard to do withholding some testing. Want to leave on a good note because might need chemo services down the road if/when I recur (the place is convenient).
My surgeon will order scans and has my back there so I feel I am going in the right direction with everything.
I am continuing ADAPT+++ (as I call it) with the addition of tetrathiomolybdate starting tomorrow.
Seeing an endo mid Dec for thyroid trouble, will update on that.
Colonoscopy also scheduled mid Dec.
Whew, is that all :)
Yes CRguy, you and rp1954 have taught me alot by all your posts/advice thru the yrs on here. I have so many notes :) Thank you!
Expand the bloodwork and keep looking...
Be your own advocate!!!

I hope everyone has a wonderful Thanksgiving as weird as it may be this year.
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
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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Green Tea
Posts: 292
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Doing a 180 with oncology

Postby Green Tea » Tue Nov 24, 2020 7:04 am

So, is your new oncologist going to be an "Integrative Oncologist"? Is this the one from FL?

henny-crc
Posts: 11
Joined: Mon Sep 14, 2020 6:09 pm

Re: Doing a 180 with oncology

Postby henny-crc » Tue Nov 24, 2020 2:57 pm

Hi, beach sunrise. What supplements exactly are you taking? ADAPT+++ means you also take half dose Xeloda off label?
Dx 06/20
23 yo
Stage 3A
T1N2a

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: Doing a 180 with oncology

Postby beach sunrise » Tue Nov 24, 2020 7:59 pm

Hi Henny,I take alot of supplements many in high doses based on bloodwork done by my ND. Are you planning on seeing an ND? For starting right now I would suggest back reading rp1954. He has valuable info posted that spans 10+yrs on here.
As for xeloda, celebrex a lil bit before chemo dose every day.

Hi green tea, yes I pulled in an integrative to help me also.
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

henny-crc
Posts: 11
Joined: Mon Sep 14, 2020 6:09 pm

Re: Doing a 180 with oncology

Postby henny-crc » Thu Nov 26, 2020 12:46 pm

Its not really possible to see a good nd in the place i live in, so im my own nd. Just wanted to ask about cimetidine with xeloda really. Are you taking it?
In general cimetidine seems like a good thing to try, but im worried about xeloda interactions. What your nd thinks about it?
Dx 06/20
23 yo
Stage 3A
T1N2a

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: Doing a 180 with oncology

Postby beach sunrise » Thu Nov 26, 2020 1:41 pm

Well, with 3 independent onc consults they all agreed cimetidine was good to take. But if you back read rp1954 he gives papers about it not being so useful but not harmful if you have a low ca19-9 panel. I did take it 6wks before and 6wks after surgery, 600mg BID before and after. From what I've read women can tolerate a higher dose than men. Typically 400mg BID for men is what I've read.
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: Doing a 180 with oncology

Postby beach sunrise » Thu Nov 26, 2020 1:57 pm

Read about resveratrol, grape seed extract and boswellia to help prevent lung mets.
Hot water extracted turkey tail and some other mushrooms (I take RealMushroom brand right now)
Also, potent beta glucan powder (I take a beta glucan 1.3/1.6 Immunodyne by LCI found on amazon)
I also take lots of others including inflavs and flavs for various targets. Send me an email and I'll send it to you so you can research them and find links to others to get what fits "you."
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: Doing a 180 with oncology

Postby beach sunrise » Thu Dec 10, 2020 1:50 pm

Update: CAP CT is all clear. 2 different scopes tomorrow.
CEA still above normal. My thinking is since nothing showed on scan but still CEA issue it gives me more chances to not recur. All other lab panels are stable. I will still keep working on that. Continuing on with ADAPT +++.
One of my surgeons broke up with yesterday. I told him it makes me nervous so he said any time I want/need an appt to just call otherwise he will see me once a year. I'm good with that. One less pair of eyes not on me is a lil unsettling right now but his answer put me at ease.

I hope everyone has a wonderful Christmas!
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: Doing a 180 with oncology

Postby beach sunrise » Thu Dec 10, 2020 8:34 pm

Noted on scan report. Does anyone have experience/insight as to what this signifies? I've done some research and would like opinions here also pretty please.

BILIARY TRACT: Mild intrahepatic and moderate extrahepatic biliary ductal dilatation that tapers to normal in the pancreas head ..

LYMPH NODES: Shotty para-aortic nodes.

MUSCULOSKELETAL: No destructive osseous lesions seen.

LUNGS I AIRWAYS I PLEURA: Diffuse scattered centrilobular emphysematous changes are seen primarily in the upper lungs. Stable 3 mm nodule in the left major fissure likely represents an intrafissural lymph node and is stable (series 2, image 48). A linear area of mucous plug is again seen in the right upper lobe (image 44). No new or enlarging suspicious pulmonary nodule. No lung mass, consolidation, or pleural effusion. Stable subcentimeter filling defect in the left mainstem bronchus which may represent a small secretion.

MUSCULOSKELETAL: Stable sclerotic lesions of the TS vertebral body in the left transverse process of T6 likely representing bone islands or posttreatment changes. No suspicious osseous lesion.
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: Doing a 180 with oncology

Postby beach sunrise » Sat Dec 12, 2020 12:00 am

Scopes today were clean. Whew!
We are now watching the lymph node in the lung. Its been there all along at 3mm with no change. Scans will continue every 3 mths.
Thyroid specialist appt on Wed. Surgeon said he is waiting anxiously for findings of that appt. I said me too me too! I love my surgeons.
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
Green Tea
Posts: 292
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Doing a 180 with oncology

Postby Green Tea » Mon Dec 14, 2020 2:51 pm

beach sunrise wrote:Noted on scan report. Does anyone have experience/insight as to what this signifies? I've done some research and would like opinions here also pretty please...

Yes, I have an opinion about your recent scan report.

The scan was a Chest-Abdomen-Pelvis (CAP) scan, but the radiologist spent most of his/her time commenting on the chest/lungs component, with not much attention to the abdomen or the pelvis.

I think that this might have happened due to the possible influx of a large number of scans in your hospital requisitioned in the context of COVID whereby the focus is primarily on the lungs.

I think that you could get a better, more informative scan next time if your doctor fills out the CT scan requisition form with specific instructions to focus on the Abdomen component and to report on such abnormalities as size and number of hemangiomas, liver cysts, etc., to give a better picture of what is going on in your liver. Actually, my own opinion is that your next scan should be an MRI rather than a CT because I think an MRI would give more detail about any physical abnormalities in the liver.

As for your "shotty " lymph nodes, here is what medicine.net has to say:

    Shotty is very commonly used in describing the feel of lymph nodes (the lymph glands) when they are palpated (felt) through the skin. "Shotty" lymph nodes are ones that are not only hard and round but also small and surely of no consequence.

rp1954
Posts: 1538
Joined: Mon Jun 13, 2011 1:13 am

Re: Doing a 180 with oncology

Postby rp1954 » Sat Dec 26, 2020 6:55 pm

...here is what medicine.net has to say:

    Shotty is very commonly used in describing the feel of lymph nodes (the lymph glands) when they are palpated (felt) through the skin. "Shotty" lymph nodes are ones that are not only hard and round but also small and surely of no consequence.

"small and surely of no consequence" until you get a path report with hot 2-7 mm (para-aortic) lymph nodes...
Been there done that - caution is not paranoia.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: Doing a 180 with oncology

Postby beach sunrise » Sun Dec 27, 2020 1:32 am

Hi rp, I am worried for sure. Was your wifes nodes shotty at first then lit up?
I found by searching this forum a surgeon who has done this type of surgery removing the nodes. I wonder if I should send him the scan for an opinion?
8/19 RC CEA 82.6 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
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
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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