PET/CT tomorrow

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rp1954
Posts: 1863
Joined: Mon Jun 13, 2011 1:13 am

doing more than watching; looking for PPV

Postby rp1954 » Fri Sep 23, 2022 11:52 pm

Beach sunrise, you've established a baseline of scans. The drs want more size, SUV and PPV (positive predictive value). Hopefully by that time you'll have more papers addressing size-SUV and PPV estimates to wrap around a lead pipe when you interview drs.

People here often get jaded about CEA because of several common complications - varying degrees of inflammation, treatment damage (RT, RFA, heavy chemo), other drug interactions, and low absolute CEA values, e.g. a CEA series averaging 0.9 +0.5 or 1 is rather imprecise. With careful management to avoid chemo damage and inflammation, nutraceuticals and off label anti-inflammatories, with constant test conditions, much CEA "noise reduction" can be had (for newer readers, Beach sunrise has already seen this).

My wife was able to achieve a CEA standard deviation of 0.1 with frequent testing across a year, until a treatment component shortage started 5+ years of slow cycle CEA flares that I visualize as slow sprouting micromets, residuals left over after the 2nd surgery. These CEA flares were heuristically beat down and weeded out for almost 6 years, and then finally subsided. One of my objectives in our first year was that my wife had chemo every day to avoid manufacturing new micromets even though she is considered likely "shot through" with (micro)mets from before initial diagnosis or first surgery. Less micromet inventory to fight later.

For careful patients that have an early broad range (divided by noise or standard deviation), CEA can be a sensitive tool observed and calibrated against various events, especially pre- and post surgery, and other (extra blood) tests.

As for beach sunrise, she has to balance her body's long term chemo tolerance against a likely met(s) that has apparently been largely controlled by her impressive chemical stack minus slippages but now slowly rising vs imaging to define surgical targets as feasible. Where she is on imaging is near the limits of PET-met sensitivity in that gray zone, above the SUV-size cutoffs for a clean scan but no met yet clearly defined by imaging alone with a high PPV, yet. This where a careful history and the extra blood work may help time future scans, or a thoracic or oncologic surgeon move sooner than (too) later.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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beach sunrise
Posts: 1062
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sun Sep 25, 2022 1:27 pm

Rp, Thank You!
I have two papers I think they will at least read, ha. I need to convince them with all the bloodwork history, scans, mild SUV - all pieces that point to one but most likely two lung mets.
I got to get my act together to get what I need to get this out of my body!
If you or anyone else runs across papers about SUV uptake findings, latest and greatest options please send them to me.
First appt with onc is the 9/27
Surgeon appt 10/14
I am going to contact Dr. Christina Boyd
MSK
Loma Linda
Germany (Rolles)
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

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beach sunrise
Posts: 1062
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Wed Nov 16, 2022 12:51 am

Hey pccr, 2 consults down. One here and the other with msk today. The lymphnode is deep in middle right lobe, very tiny but SUV of 1.3. I have 2 more super tiny ones they can see, one in right lower lobe and one in left lower lobe measuting 1-2 mm. Word is tumor board most likely won't agree to removing middle lobe and both offer SBRT first then go from there. One idea was heavy chemo first (msk) to see what it would do. I turned that down.
Sent email to Germay for Rolles. I wait some more !
I hope and pray plan B is your ticket to getting rid of this or at least treat it as cronical illness. I read your update.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

roadrunner
Posts: 475
Joined: Sun Jan 12, 2020 8:46 pm

Re: PET/CT tomorrow

Postby roadrunner » Thu Nov 17, 2022 3:37 pm

Interesting recent article on the YAG approach that collects past study data. I must admit it’s surprising that this isn’t more widely done. But you’ve gone to the pioneer (Rolle), so you’ve got this covered.

Mostly posting as FYI for others. Def a potential option for deeper, central, or multiple pulmonary CRC mets.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9600252/
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

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beach sunrise
Posts: 1062
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Thu Nov 17, 2022 11:59 pm

Thanks for the study paper, RR.
I heard back today from Dr. Till about Rolles. He needs the PET/CT scan and medical records.
I am so glad I took the advice to have everything organized and ready should I need to have it quick.
Really hate the fact it is going to be cold cold snowy there but can't wait until spring, ya know.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

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beach sunrise
Posts: 1062
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Fri Nov 18, 2022 1:43 pm

Dr. Drews is over it. Dr. Rolles retired I believe. I received email from Dr. Till.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1863
Joined: Mon Jun 13, 2011 1:13 am

Re: PET/CT tomorrow

Postby rp1954 » Sat Nov 19, 2022 3:33 am

beach sunrise wrote:Hey pccr, 2 consults down. One here and the other with msk today. The lymphnode is deep in middle right lobe, very tiny but SUV of 1.3. I have 2 more super tiny ones they can see, one in right lower lobe and one in left lower lobe measuting 1-2 mm. Word is tumor board most likely won't agree to removing middle lobe and both offer SBRT first then go from there. One idea was heavy chemo first (msk) to see what it would do. I turned that down.


One thing that most don't understand, probably including some of your consults and none of the indirects (uninterviewed "tumor boarders"), is how "politely" heavy duty the chemo is that you are doing.

For starters, you have done higher Xeloda treatment levels than I've ever seen on anyone on the boards, after your first oncologist flunked on Folfox, to stop and drive CEA down. My "2nd place" memory for xeloda level (BSA adjusted) is a CSN forum guy who did 5000 mg/d, on European dosing levels, for two weeks out of three, successfully both for full length treatment and non recur (stage 3 RC), after nearly flunking Xeloda tolerance. I told him about the folic acid fiasco etc. He still had a somewhat tough time on side effects because he didn't do IV vitamin C, PSK etc.

Second, you have the ++ of gray zone CRC inhibitor drugs, including celecoxib.
Which for my wife, celecoxib added to our supplement stack enabled her to pull out of a CEA recur flare.

Third you have the ++ of somewhat targeted supplementation, anti-inflammatories, immune support, and perhaps additively inhibitory stuff.

Presumably, their idea of heavy chemo is still folfiri + Avastin.
In the early ADAPT patients (no +++), they tended to not respond to ADAPT after full Folfiri. In that case, I would try to identify the worst masses and cut them out, to try to improve chemo response, like my wife did. Also, I noticed that some early ADAPTers with Lin were playing around with low level Xeloda, even TID, to avoid Xeloda side effects.

In my eves, low level xeloda is more an anti-circulating cell strategy and a weaker hope on immune control or chemo sensitivity, especially without extra targeted stack items.

Good luck on establishing a dialogue in Germany with Rolle's follow ons.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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beach sunrise
Posts: 1062
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1863
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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beach sunrise
Posts: 1062
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

DarknessEmbraced
Posts: 3817
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: 1062
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1062
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
Jacques
Posts: 678
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: 1062
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


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