PET/CT tomorrow

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beach sunrise
Posts: 694
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: 1605
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: 402
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 TIL Therapy

User avatar
beach sunrise
Posts: 694
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: 402
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 TIL Therapy

rp1954
Posts: 1605
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

User avatar
beach sunrise
Posts: 694
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"


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