PET/CT tomorrow

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beach sunrise
Posts: 726
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Tue Sep 20, 2022 11:57 am

So far so good on chemo 7 days a week. Bloodwork isn't suffering to much in the critical areas. Some panels I have to work on a little differently based on last draw. If I had not slipped on 2-3 blood draws due to personal things I would have caught the off levels. It is what it is!
YES, curative surgery is what I am after. My dr's know this. I will powwow next week with all three of them and digest their thoughts first before I hunt 2-3 opinion.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rp1954
Posts: 1621
Joined: Mon Jun 13, 2011 1:13 am

talking not doing

Postby rp1954 » Tue Sep 20, 2022 2:22 pm

One observation about lung met patients in the US from 10-12 years ago. Maybe things have changed.

Only a small percentage (2%?) of pulmonary mets got removed. It is (was) a pretty small window of operability - knocked out if the mets got too many, too big or too many sites. So while everybody was waiting for complete agreement those are lung mets, the open window closed. How convenient for the medical oncologists that demurred on real surgery candidates.

This disturbs me on several counts, for so many wasted lives:
1. lack of incisive or even rough but effective criteria for lung surgery, The size-SUV papers stagger me about missed opportunities.
2. Rolle's laser surgery for lungs in Germany - almost unlimited by size - large or small, location or number (~100).
3. perioperative and targeted cimetidine
4. perioperative chemo and IVC
5. daily chemo potentially better at stopping new metastases
6. with all the above, multiorgan mets become surgically doable.
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

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: PET/CT tomorrow

Postby prayingforccr » Tue Sep 20, 2022 3:55 pm

beach sunrise wrote:So far so good on chemo 7 days a week. Bloodwork isn't suffering to much in the critical areas. Some panels I have to work on a little differently based on last draw. If I had not slipped on 2-3 blood draws due to personal things I would have caught the off levels. It is what it is!
YES, curative surgery is what I am after. My dr's know this. I will powwow next week with all three of them and digest their thoughts first before I hunt 2-3 opinion.


Interested and hopeful for where you come down, beach sunrise
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

User avatar
beach sunrise
Posts: 726
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Wed Sep 21, 2022 3:31 pm

No No NO! Surgeon says PET CT is clear, watch and wait. WHAT!?! He did not set up appt with lung surgeon.
I will have to do this on my own. Appt with surgeon not scheduled til mid Oct.
I am beyond mad. I will not sit between the cracks to fall thru at some point.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: PET/CT tomorrow

Postby prayingforccr » Wed Sep 21, 2022 3:54 pm

beach sunrise wrote:No No NO! Surgeon says PET CT is clear, watch and wait. WHAT!?! He did not set up appt with lung surgeon.
I will have to do this on my own. Appt with surgeon not scheduled til mid Oct.
I am beyond mad. I will not sit between the cracks to fall thru at some point.


Dr Christina Boyd
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

rp1954
Posts: 1621
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 to almost nothing mid 2018, mostly IV C

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beach sunrise
Posts: 726
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
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: PET/CT tomorrow

Postby prayingforccr » Tue Nov 15, 2022 5:42 am

What was the result of these meetings?
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

User avatar
beach sunrise
Posts: 726
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
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

roadrunner
Posts: 312
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
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

User avatar
beach sunrise
Posts: 726
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
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: PET/CT tomorrow

Postby prayingforccr » Fri Nov 18, 2022 2:30 am

beach sunrise wrote: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.


I spoke with Dr Drewes about a year and a half ago.

I found him to be very abrupt and he seemed to look for reasons to not do the surgery (my impression)

Perhaps I will reach out to Dr Rolles if you find him to be a little more sympathetic, though it was my understanding thst he had retired years ago.

I’m down to my last bullets.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

User avatar
beach sunrise
Posts: 726
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
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: PET/CT tomorrow

Postby prayingforccr » Fri Nov 18, 2022 3:17 pm

beach sunrise wrote:Dr. Drews is over it. Dr. Rolles retired I believe. I received email from Dr. Till.


DM
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

rp1954
Posts: 1621
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 to almost nothing mid 2018, mostly IV C


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