PET/CT tomorrow

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beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sun Nov 20, 2022 1:11 am

Yes, they look at me like WTF you doing IVC for and the other things. Drives me crazy. I know they know, they have to know but play they don't. Idk.
Now I keep my mouth shut about things I do because they just don't want to understand how potent some things are against cancer and kRAS.
My xeloda is high dose, which I believe has kept cancer at the gate for this long. I have no hand/foot stuff going on with dose I am at. When I upped the dose I started to see hand/foot so went back down a few 100mgs. The guy that took 5000mg, wow I'm impressed for sure!
I take melatonin along with celebrex based on study papers I found. Can't seem to go higher than 30mg T.I.D. though. It makes me slow going for sure.
I hope Germany is a GO! I will let you know.
Thanks for all the advice and yrs of research knowledge you bring forward.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Re: PET/CT tomorrow

Postby rp1954 » Sun Nov 20, 2022 2:08 am

beach sunrise wrote:Yes, they look at me like WTF you doing IVC for and the other things. Drives me crazy. I know they know, they have to know but play they don't. Idk.

In my experience, at least as of ten years ago, most "conventional" doctors really didn't understand megavitamin C because they have been raised on the usual lies and ignorance, misinterpreted minimalist data, and avoidance of basic scientific concepts like blood concentration, duration or applicable markers. It's a dismissive formative and commercial bias that's hard been to overcome for several generations. When someone opens their mouth about Pauling's sideshow, it usually means they know nothing about the medical history and actual performance aspects of (mega)vitamin C.

The guy that took 5000mg, wow I'm impressed for sure!

Large guy vs you, 2 weeks on, one week off, his European style dose aimed at a maximum of 2500 mg/m2 on the normal 2 on/1 off schedule. That is roughly equal to 1667 mg/m2 daily at 2.0 m2 BSA but he probably had even more BSA for weight. You've smoked his "(American) forum record" by a long shot.
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

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beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sun Nov 20, 2022 10:19 pm

I left the study papers with the surgeon.
My hospital was banking on me staying with them for SBRT. They gave me a hard time with releasing PET/CT scan but it should be in the portal by tomorrow morning. I will check after midnight before I go to bed. SMH
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

DarknessEmbraced
Posts: 3746
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: PET/CT tomorrow

Postby DarknessEmbraced » Sat Nov 26, 2022 12:03 pm

I hope that you're doing well and that you received your scan results. *hugs*I hope you received good news.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sat Nov 26, 2022 8:32 pm

Thank you, DE! I hope things with IBS are settled down for you.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sun Dec 04, 2022 10:08 pm

Update: CT scan Wed. with crc surgeon follow up after to go over CT.
Lung surgeon appt the 12th to go over CT.
Got the run around about getting copies of scans to send to Germany, smh. They will have them ready on the 12th.
I hope I am a canidate for Rolles. Fingers crossed on that one.
My hospital wants to start SBRT asap but it will just have to wait until I hear from Germany. They won't be happy about it but who cares, my cancer, my life.
Does anyone know if you have to show a vax card to cross the border into England then Germany?
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

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Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: PET/CT tomorrow

Postby Jacques » Mon Dec 05, 2022 3:38 am

beach sunrise wrote:... Does anyone know if you have to show a vax card to cross the border into England then Germany?

Here is where you can get up-to-date COVID information on travel from England to Germany:

https://www.kayak.com/travel-restrictions/germany?origin=GB

However, be sure to note the following disclaimer in the above link:
    "Currently, no countries are considered as a virus variant area in the German list, but may certainly be subject to change at any time.".
Thus, before you make final plans to travel to Germany via England you need to check the link below to see if anything has changed lately:
https://www.rki.de/EN/Content/infections/epidemiology/outbreaks/COVID-19/COVID19.html

Good luck!

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beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Mon Dec 05, 2022 10:39 pm

Thank you Jacques!
I really appreciate it.
It amazes me sometimes how yall find things and fast.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Mon Dec 12, 2022 1:44 pm

Update: CT scan got pushed back 1 1/2 weeks due to contrast issues so scan is tomorrow. We will find out if hammering lung node with vitamin D3, vitamin C, NAC, Bromalain, ect helps the SUV go down. SUV was 1.3.
Lung surgeon wasn't to happy to hear I contacted Germany about Rolles. Whatever!
I will pick up CD of PET/CT scan tomorrow to send to Germany. I really hope I will be a candidate considering USA options not as good % wise and risk/benefit.
Signatera still showing neg. Will redo on the 15th to make sure. I asked about the test not being good at detecting cancer with lung mets maybe. Answer was they will get back with me. Haven't got a response yet.
Last edited by beach sunrise on Mon Dec 12, 2022 2:40 pm, edited 1 time in total.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: PET/CT tomorrow

Postby Jacques » Mon Dec 12, 2022 2:32 pm

beach sunrise wrote:... Sognatera still showing neg. Will redo on the 15th to make sure. I asked about the test not being good at detecting cancer with lung mets maybe. Answer was they will get back with me. Haven't got a response yet.

Did you mean Signatera™ ?

User avatar
beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Mon Dec 12, 2022 2:40 pm

Yes, Signatera. Goodness
I wonder if it picks up on CRC lung mets? I am showing SUV of 1.3 on a 5mm lung node, CEA has risen but Signatera shows neg.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

MadMed
Posts: 202
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: PET/CT tomorrow

Postby MadMed » Mon Dec 12, 2022 6:40 pm

According to my Onc, it is not good for lung Mets. Another crc patient of theirs was negative on Signatera but showed lung Mets on CT. She stopped sending mine after that.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

User avatar
beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Tue Dec 13, 2022 3:21 pm

Thank you, Madmed!
Do you have the study papers or can you get them from your onc?
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

MadMed
Posts: 202
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: PET/CT tomorrow

Postby MadMed » Tue Dec 13, 2022 3:29 pm

I'll ask her for more details or papers. In this particular case, it was another patient of hers that had a lung recurrence while still negative on Signatera.
There seems to be indication out there:
https://ascopubs.org/doi/abs/10.1200/PO ... nalCode=po
CONCLUSION
Patients with lung-only and peritoneum-only metastatic disease have significantly lower levels of ctDNA, suggesting decreased clinical sensitivity for subclonal variants.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9390824/
From a clinical standpoint, ctDNA detection can vary by stage, metastatic burden, and the site of metastases.2-5 Kagawa et al6 observed that CRC patients with liver metastases were associated with increased ctDNA detection rates compared with the patients with lung and peritoneal metastases.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

User avatar
beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Fri Dec 16, 2022 7:49 am

Thank you so much, Madmed!
PET/CT scan is off the Germany.
Now we wait to see if I am a candidate!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test


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