PET/CT tomorrow

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beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

PET/CT tomorrow

Postby beach sunrise » Thu Sep 15, 2022 11:31 am

Scan tomorrow to see if lung node has grown more and get more answers.
Whether it lights up or not I am pushing for whole removal. If hospital doesn't agree then I will most definitely look elsewhere. This thing is a grenade and CEA proves it.
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"

MadMed
Posts: 187
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: PET/CT tomorrow

Postby MadMed » Thu Sep 15, 2022 12:28 pm

fingers crossed. I don't mean to tell you what to do but my instinct is removal is the most direct path to NED. Good luck tomorrow.
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

Luna18
Posts: 19
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: PET/CT tomorrow

Postby Luna18 » Thu Sep 15, 2022 12:50 pm

Good luck tomorrow.
Best wishes,
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colostomy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection, and colostomy reversal
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

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

Re: PET/CT tomorrow

Postby prayingforccr » Fri Sep 16, 2022 12:59 am

beach sunrise wrote:Scan tomorrow to see if lung node has grown more and get more answers.
Whether it lights up or not I am pushing for whole removal. If hospital doesn't agree then I will most definitely look elsewhere. This thing is a grenade and CEA proves it.


You know the drill, beach sunrise.

Praying for no new developments and prompt resolution thereafter.
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: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sat Sep 17, 2022 4:35 am

Thank you, Luna18!
Madmed and pccr, yep! Whole removal is my goal. High dose vitamin C in the hospital along with xeloda within 24hrs after surgery. My surgeon agreed to it so he better not back track. Plan B in back pocket.
Odd thing: scan reports are available day they are done if I have an in person appt with surgeon. If appt is telehealth later, the scan results have always been posted within two days of being done. So, this time the portal message tells me scan pending until the 23rd. I don't know why?
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"

DarknessEmbraced
Posts: 3727
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: PET/CT tomorrow

Postby DarknessEmbraced » Sat Sep 17, 2022 8:16 am

I'm sorry you have to wait for scan results. *hugs*I hope you get good scans. *hugs*
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: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sat Sep 17, 2022 9:31 am

Thank you, DE!
Results are posted. SUV 1.3 on Basal Right Middle Lobe, size 6x4mm last month, 5mm now. Unchanged. Also another tiny node concerning in right lobe, very low uptake.
So, most definitely need them out of there.
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 » Sat Sep 17, 2022 12:07 pm

For what it’s worth, I had a vats lung resection about a month ago to remove two lesions from which they will extract and grow the TILs

It was no big deal.

Nothing to be afraid of at all.
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

roadrunner
Posts: 310
Joined: Sun Jan 12, 2020 8:46 pm

Re: PET/CT tomorrow

Postby roadrunner » Sat Sep 17, 2022 3:07 pm

Beach: Perhaps I’m missing something, but don’t the small size, zero growth (admittedly limited predictive value here because just a month) and sub-2.5 SUV indicate that these are likely benign? I can’t recall—have you had separate indicators of malignancy (say, growth over time)? I do understand the point about elevated CEA (though you don’t say what it is in this thread, at least, so that’s a little hard to evaluate). But while I agree with prayingforccr that VATS wedge resection is comparatively easy, it’s still real surgery, and the fewer surgeries on the lungs, the better. Also, a wedge isn’t always possible due to location, nearby structures, etc. I also wonder whether you’ll find a surgeon who’ll do it at these values. But again, perhaps I’m missing something, or forgot something. Good luck either way!
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.)

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

Re: PET/CT tomorrow

Postby prayingforccr » Sat Sep 17, 2022 3:57 pm

In the same vein as roadrunner, my first thought was “no growth”?

Nothing to do but continue as you were.

But personally, if this was all the evidence of disease in my body that remained, and I could have them removed via vats, ablation or sbrt, then I would.
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: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sat Sep 17, 2022 4:52 pm

RR, CEA is a very reliable marker for me. It was 13 in May, 16.x in June and now 26. Super high! Only thing ever showing up is the dang lymphnode. But now another very tiny one is there. This is why they need to come out. I know it is a met based on SUV, CEA and expanded bloodwork. I have more thorough expanded bloodwork on Monday.
What are your thoughts?
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: 310
Joined: Sun Jan 12, 2020 8:46 pm

Re: PET/CT tomorrow

Postby roadrunner » Sat Sep 17, 2022 7:33 pm

My thoughts aren’t likely to be that useful (sorry!), but here goes:

While I agree that the rise in CEA is concerning (though yours has been at least somewhat elevated for years, and this rise over 10 is recent (I’d want to rule out alternatives, like infection (including COVID, which can be asymptomatic)), the larger node is very small, and PET/CT is less diagnostically effective at that size. Also, to me the SUV + lack of observed growth (though I don’t know the history, namely, how it got to 5mm), at least may cast some doubt on the conclusion that it’s a met. See, e.g., this study, which uses 1.4 SUV as the cut off for 6-8mm nodules (but note also the low diagnostic value).

https://jnm.snmjournals.org/content/49/ ... t_1/112P.4

Also, does your oncologist think it looks like a met? The CEA may or may not indicate recurrence somewhere, but you would want at least a good sense that these particular nodes/nodules are bad before removing them, I would think.

You say “[you] know it’s a met.” Am I missing something above? To me, it looks unclear. Of course, I’m
not a doctor, and I don’t have full information, so my view should certainly be taken with a grain of salt. Just offering questions, really.

In a case like this, one or very possibly two oncological and surgical opinions may well be a good idea. Thus, I’d be interested in my oncologist’s view on what this data suggests (if anything), and what options exist for diagnosis and therapy. With respect to metasectomy: are either/both nodes/nodules amenable to an easy wedge, or would a more extensive procedure (segmentectomy or lobectomy—taking more healthy tissue) be required? Would a surgeon even be able to reliably locate these (there are advanced techniques if not sub-pleural, but smaller than 5mm gets very tough, I think). Would ablation of some sort preserve more lung? Given the size of these nodes/nodules, would you get enough material for genetic testing if they are removed and do turn out to be metastatic disease? Finally, is there a risk to waiting for more clarity (here I’ve seen diverse opinions)?

Those are my thoughts. Again, really just a lot of questions for your doctors (and potentially second opinion docs). It might be good to update your signature as well, as it does not reflect the new info.
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
Peregrine
Posts: 131
Joined: Tue Mar 01, 2022 1:18 am

Re: PET/CT tomorrow

Postby Peregrine » Sun Sep 18, 2022 2:03 am

roadrunner wrote: It might be good to update your signature as well, as it does not reflect the new info.

Just a short note to say that I agree, in principle, with most of what roadrunner is saying, but I also have concerns about your signature:

In particular, I have an issue with your use of the acronyms NCI and TM in your signature.

Do you mean National Cancer Institute (NCI), and Transcendental Meditation (TM)-- which are what are given in the Collins Medical Dictionary and in the Free Dictionary as preferred definitions? If not, then what could these acronyms in you signature possibly mean?

Thanks for any clarification.

User avatar
beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sun Sep 18, 2022 1:12 pm

Peregrine,
NCI-Nagourney Cancer Institute
TM-Tetrathiomolybdate

RR, Good points. Taking notes for appts.
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

Re: PET/CT tomorrow

Postby rp1954 » Tue Sep 20, 2022 6:35 am

I think part of what's missing in these comments, is that beach sunrise is running pedal to the metal on daily chemo, out beyond ADAPT++++ - enough to melt the average oncologist's mind as well as the normal patient (without special procedures).

She is not a normal patient. Her mets may be 90%-99% dead and not behave normally, or grow or light up as much SUV wise. Going off chemo can be extremely dangerous, whether a vacation or forced off by accumulated damage to WBC/RBC/platelets or any reason.

Whether it's months or years at a particular dose, higher chemo levels for a particular protocol is harder on the body and more likely to break something sooner.

Normally, "chemo forever" is merely indefinite until the patient's body breaks down or the cancer loses chemosensitivity. Only in recent time has it been possible to break out of "chemo forever" and actually resolve the cancer multimodally. That is usually a series of substantial or extraordinary efforts.

Of course, she wants off the train if possible - curative surgery.
Even a partial success now may allow her to reduce chemo some, a big deal for WBC, RBC, platelets, and then plot another move toward resolution. Without successful surgery, even a partial reduction of one critical ingredient could start the exponential rise of one or more markers despite being flat smooth before.

Note: Removal of my wife's big para-aortic lymph nodes (~ 2 cm each, x3), and most of the numerous smaller ones, allowed us to use moderate daily chemo, more successfully, for longer. The lab director for our chemosensitivity studies remarked it was good that we had an extra large "live" tissue sample (15x), because so many of the tumor cells were already dead.
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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