Still Hunting

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

Re: Still Hunting

Postby claudine » Mon May 24, 2021 3:24 pm

It's rather large, this is from the original CT scan: "Expansile low T1, low T2, intermediate/high STIR signal mass with sclerotic rim is centered in the right L4 vertebral body extending into the right pedicle measuring 4.3 x 3.2 x 2.2 cm"

Regular (EBRT) radiation did not do much to control it, but SBRT was more successful; he was able to receive 3 intense fractions at OHSU (Portland). In the case of your husband, is the plan to watch if chemo is enough for control? Since it's quite a bit smaller.
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

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Mon May 24, 2021 4:21 pm

I'm pretty sure that "watch and wait" is the plan for it. No doubt there is no evidence that doing anything about it improves survival, etc. etc., but still, we would like to get rid of as much cancer as we can.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Still Hunting

Postby beach sunrise » Tue May 25, 2021 11:29 pm

I sent my data spreadsheet of bloodwork panels history. Pointed out certain markers and asked them to study it also as I think a different scan or combo scan should be on the table for consideration this go around. We shall see!
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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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Still Hunting

Postby Green Tea » Wed May 26, 2021 12:04 am

beach sunrise wrote:I sent my data spreadsheet of bloodwork panels history. Pointed out certain markers and asked them to study it also as I think a different scan or combo scan should be on the table for consideration this go around. We shall see!

What about doing a hepatic angiogram ?

    "Hepatic angiography is an x-ray study of the blood vessels that supply the liver. The procedure uses a catheter (thin, flexible tube) that is placed into a blood vessel through a small incision. A specially trained doctor called an interventional radiologist usually does the procedure."

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Still Hunting

Postby michelle c » Wed May 26, 2021 1:28 am

Have you had a CA19-9 blood test or do you just have CEA tests? I always had both. For some, CA19-9 is a better marker
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

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

Re: Still Hunting

Postby claudine » Wed May 26, 2021 11:44 am

I have to confess that I'm baffled at the onc's nonchalance toward such a CEA value.


I've thought about this quite a bit, too. I think it's probably related to how much my poor husband underwent last year. He really went through the wringer, with back-to-back surgeries, adrenalectomy in February then the triple vertebrae fusion in May - that one especially was rough and it took him a long time to recover. Since then his QoL has been much higher, and maybe the onc wants to give him as much of a respite/recovery period in preparation for... Who knows what will eventually pop up on a scan, eventually...
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

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Still Hunting

Postby catstaff » Wed May 26, 2021 12:26 pm

If that is the case would be nice if he actually explained it that way. It's certainly plausible. You said it doesn't grow all that quickly so the onc may have felt it could be put off.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

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

Re: Still Hunting

Postby claudine » Tue Jun 22, 2021 12:23 pm

Well, DH got a new CEA reading yesterday - he's at 81.1 now. He met with his onc before the result was in, and the doc said that if it kept rising a lot (it went from 4 to 25 to 50 to 75 the past 3 visits), he'd order a PET for the Fall, but I'm not sure what will happen since it "only" went up by 6 ng/ml this time? I guess I'll call him. I'm relieved it didn't go up to triple digits, but it's still scarily high!
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: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Still Hunting

Postby beach sunrise » Tue Jun 22, 2021 12:42 pm

That is scarily high!
Mine was that high at dx but nothing but the primary has ever been found. So frustrating for sure. Let me know if they are moving his scan up and the results pretty please. Do you know make and model of equipment used for your husband? I am on the hunt for the very best scanning equipment.
I hope you all are living it up in France.
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: Still Hunting

Postby claudine » Tue Jun 22, 2021 12:55 pm

I hope you all are living it up in France.


Taking off next week - hopefully they let us enter, now that we're fully vaccinated!
I've no idea what CT scan machine is used at our local hospital. I don't think the onc will move the scan up; from what I can see on DH's chart, the next appointment is 3 months from now (as usual), but there's not details yet on whether he'll request a PET or another "regular" CT scan. The only difference is in his notes, which say "Hold on chemo until clinically significant progression and follow-up in 3 months or as needed with a CT chest abdomen or PET prior and lab work with CBC CMP and CEA"; previous visit didn't have any mention of PET.
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

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

Re: Still Hunting

Postby claudine » Tue Jun 22, 2021 2:27 pm

Just got off the phone with onc. He's asking our insurance to approve a PET scan for next visit (September). I'm happy with that; regular CT may be missing something, it will be good to know.
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

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Still Hunting

Postby beach sunrise » Tue Jun 22, 2021 10:43 pm

Great news there! Hopefully PET will pick it up and onc is cutting the wait time also.
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
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Still Hunting

Postby O Stoma Mia » Sat Sep 18, 2021 12:50 am

In June 2021, Claudine wrote:
I hope you all are living it up in France.

Taking off next week - hopefully they let us enter, now that we're fully vaccinated!
I've no idea what CT scan machine is used at our local hospital. I don't think the onc will move the scan up; from what I can see on DH's chart, the next appointment is 3 months from now (as usual), but there's not details yet on whether he'll request a PET or another "regular" CT scan. The only difference is in his notes, which say "Hold on chemo until clinically significant progression and follow-up in 3 months or as needed with a CT chest abdomen or PET prior and lab work with CBC CMP and CEA"; previous visit didn't have any mention of PET.

In September 2021, Claudine wrote:And another stable scan! Lots of "unchanged compared to previous scans" - many small calcified lung mets, a 5mm hypodense lesion in liver, a pancreatic cyst, and of course the mixed lytic/sclerotic L4 lesion. But no apparent recurrence or progression. There was mention of this being a PET rather than a CT scan but that wasn't the case, not sure why, maybe the insurance declined? Follow up appointment with onc next week - CEA will be measured then. I have this wild hope that after slowing its wild increase (25 - 50 - 75 then 81), maybe it'll have gone DOWN?? I know it's unrealistic, but I've got this wild hope DH will be a "one in a million" unexplained case!

Meanwhile - another 3 months' respite :D :D :D

Felicitations !! "...another stable scan..." and "...no apparent recurrence or progression...", and good luck with your follow-up appointment with the oncologist next week.

      Image
Image

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

Re: Still Hunting

Postby claudine » Sat Sep 18, 2021 9:07 am

Thanks OSM! We’ve learned to enjoy life in 3-month « chunks » :)
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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