PET/CT tomorrow

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rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

heaviness

Postby rp1954 » Tue Jan 31, 2023 7:12 pm

Claudine wrote:Looks like you’re always on top of things beach sunrise! I just wanted to add that my husband did Folfiri/Avastin for his many small lung nodules (I think the largest one was 5mm), he finished systemic chemo over 3 years ago and his lungs have been clear since, no recurrence there, so there’s something to be said for heavy chemo sometimes :)

Congratulations and thanks for sharing your husband's met sizes and CEA data over the years.
Any CA199 and LDH data would be valuable, along with peak MCV.

Perceptions and definitions
Do we mentally classify "heavy chemo" by dose intensity, the side effects and toxicity, the total dose, the toxicity to the cancer and tumor response, or some combination?

One oncologist classed my wife as heavily treated ( not exactly the same as "heavy chemo") after 10-11 months of our home brew with 3-4 dinky chemo pills and just starting with low dose leucovorin. Also she had had 800 - 1600 mg/day of biomarker targeted cimetidine, 45 mg menaquinone-4/day for 7 months and literally, kilograms of IV ascorbate, an anti HIF-1a and anti KRAS tx, along with a lot of nutraceuticals. We had not yet started celecoxib beyond days-2 weeks after surgery.
Perhaps ideally, extra heavy chemo might have 1-2 chemical treatments, 100% complete response, and no side effects.

I think it is fair to say that beach sunrise uses a nonstandard "heavy chemo", but not an ASCO/NCCN recommended cyclical heavy chemo nor does she have as much intolerance from toxicity, where her first oncologist failed at both with Folfox alone. It is true that we don't know her response to Folfiri + Avastin, Folfoxiri + Avastin or even Folfox + Avastin, where oncology take 2-3 swings at these series and hopes for at least one (often temporary) response, whatever you get.
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

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: PET/CT tomorrow

Postby roadrunner » Tue Jan 31, 2023 10:47 pm

Beach: Wow, this really does present some tough choices! I assume that you meant by “if any were doubling time” whether any reflected growth/doubling time generally indicative of CRC pulmonary mets. And their answer was “no.” That’s what it sounds like, anyway. So that’s good, at most you have very slow growth, but obviously this doesn’t rule out disease. It’s good they’re all small and (at least mostly) stable, but that makes everything uncertain, and I’m sure somewhat maddening.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Tue Jan 31, 2023 11:16 pm

Claudine, it is helpful information about folfiri/avastin experience of your husband. Yall have been thru alot and also on top of things.

Rp, for my mind heavy chemo means side effects and toxicity to my body. Lowering immune system and the other side effects that can be terribly unpleasant and may never fully recover. I have a good plan now and lung surgeon even said that clearly if its mets that my protocol is keeping it slow growing. I went back to chrono dosing around Christmas and IVM 24mg every other day. CEA has definitely gone down (7pts) but I know its just staving off growth at this point. I just received two more TCMs from ND based on a couple of markers we watch. So, hopefully they will help until I get a good solid plan to get rid of these nodules before the surgery boat drifts away.

Roadrunner, I am def in the middle of SOC and outside SOC in terms of what to do and who can do it. I want them gone and just continue with ADAPT+++.
I did ask about doubling time that you suggested. The lung surgeon cut me off from most of the questions, He was super busy because he was behind. SMH
He asked about 2nd opinions and told him about Germany and one more from MSK different surgeon. He had never heard of Rolles and said it makes him curious so he will research it.
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: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: PET/CT tomorrow

Postby roadrunner » Wed Feb 01, 2023 9:53 am

Other than expressing disappointment over impatience from your physician (this is important stuff to us patients, after all!), I don’t have too much more to add at this point. I hope you get an option (apparently SBRT at this point) that allows you to address these nodules. I would only say that if you go the SBRT route, make sure your you’re comfortable with your radiation oncologist (he/she should give you time and answers!). There are some risks inherent in the procedure (though usually it’s pretty safe), and dose and dosimetry considerations that can get pretty subtle. That is particularly true when it comes to nodules that are close to important vascular or pulmonary structures. The rad onc can make a real difference across the board.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sun Feb 05, 2023 5:31 pm

Thank you RR, you give me things to think about and discuss. I really appreciate it.
I appreciate all the advice and opinions that everyone has contributed to my case.
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

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: PET/CT tomorrow

Postby claudine » Mon Feb 06, 2023 1:20 pm

for my mind heavy chemo means side effects and toxicity to my body. Lowering immune system and the other side effects that can be terribly unpleasant and may never fully recover.


For sure. DH has permanent neuropathy in his feet from Xelox (which didn't even work!). IMHO if you can avoid heavy chemo it's much better for your body as a whole. Looks like you only have a few nodules, so if SBRT is an option, it's way better!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

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beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Tue Feb 07, 2023 4:21 pm

Hi Claudine, yes just a few indeterminate nodules based on scans but we all know its mets. SOC sucks when dr's generally won't make a move until proof thru a scan. Blows my mind. SBRT might not be on the table as of this morning. Got a call from lung surgeon saying tumor board advised against it until next scan in March and if no significate growth then maybe just watch. Are you kidding me!!! I let him know my feelings of dr's taking SOC/insurance policies/rules/ rec's when someones life is on the line. Missing the surgery boat is common with SOC drs follow. So ya, not sure if liked my response or not but the truth is the truth. Anyway, waiting on Germany to answer yes or no. If its a no go then I can still have SBRT thru another consult. Whew at the stress. I try not to stress to much. Ashwaghanda helps and other things.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Tue Feb 21, 2023 1:02 pm

Finally got email from Dr. Kern in Germany. They are having IT problems and need missing scan sent thru fedex.
Nothing ever goes smooth with me. Still no word from the other surgeon for second opinion.
IVC today and lots of different types of bloodwork tomorrow.
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Thu Feb 23, 2023 4:54 pm

Man at the anxiety of waiting waiting waiting!
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: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sat Mar 04, 2023 1:52 pm

As of Thursday Feb 24th, Germany received the missing scan and would get with me soon. How soon is soon?
I have my notes ready for discussion. If they decide to say "lets wait" I have a pitch for benefit to go ahead with it regardless of whether its indeterminate or not.
Whew.
Bloodwork looks good. Big panels next week. I am def curious to know if the add ons are working for IL's CTL's NK's and a few others. I feel good about it but there can always be suprises.
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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