Possibly still NED...our story to date

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mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Mar 05, 2019 4:38 pm

So were my questions about the "wedge-shape hyperenhancing areas in the right hepatic lobe consistent with perfusional anomalies" that she refused to answer. I am so sorry I have put my husband through all this. We would have been better off staying at MGH.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

radnyc
Posts: 340
Joined: Tue Apr 06, 2010 6:32 pm

Re: Possibly still NED...our story to date

Postby radnyc » Tue Mar 05, 2019 5:38 pm

“>>> Given the track record we've had thus far, I don't hold my breath to get any answer.... I really hate this woman.“

Well, that’s pretty telling. I think that if you’re are so set against it, don’t bother. But make sure it’s your husband that makes the final decision, he’ll have to live with it.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Mar 05, 2019 5:57 pm

Oh, absolutely it is his decision. I have been as neutral with him as Switzerland for the past few days. Laid out what I know and what I don't know and the ball is in his court. I feel awful bringing him there, though, and I know I won't be able to forgive myself if things go sideways. The risks are incredibly high, and I pray that those "wedge-shape hyperenhancing areas in the right hepatic lobe consistent with perfusional anomalies" that Dr. Kemeny did not like being asked about are not there anymore (despite the fact that they are somewhat still visible on the MRI CDs from MGH I have viewed) and won't increase the [life threatening, e.g. cholangitis] risks to 20%.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

Milk Tea
Posts: 16
Joined: Wed Feb 13, 2019 1:14 pm

Re: Possibly still NED...our story to date

Postby Milk Tea » Tue Mar 05, 2019 7:02 pm

Don’t be so hard on yourself. Your husband is a very lucky man to have you by his side as a strong advocate. All of your questions are great legit questions. I do hope your doctor or doctor’s staff will be answering them. (Pls do share if you get them)
One way or another, he will be NED after surgery. With pump, we pray for no liver or bile ducts complications, if no pump, we try our best with good supplements and/or mop up and/or maintenance chemo to prevent recurrence.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Swirdfish
Posts: 288
Joined: Sun Jun 19, 2016 3:57 am

Re: Possibly still NED...our story to date

Postby Swirdfish » Wed Mar 06, 2019 4:08 am

I had lots of questions for my chemo, surgery and radiation. Many doctors gave me different answers, and some I didn't like.

Being such a big disease there are more questions then answers.

Following your posts for a while, you seem like a very difficult person to deal with. But I guess your already are aware of this.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Wed Mar 06, 2019 7:04 am

Holy cannoli! Just got his CA19-9 result. <1. What the heck?

The testing method is an immunoenzymatic assay
manufactured by Beckman Coulter Inc. and performed
on the UniCel DxI 800.

Values obtained with different assay methods or kits
may be different and cannot be used interchangeably.

Test results cannot be interpreted as absolute
evidence for the presence or absence of malignant
disease.

Test Performed by:
Mayo Clinic Laboratories - Rochester Superior Drive
3050 Superior Drive NW, Rochester, MN 55901
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

rp1954
Posts: 1436
Joined: Mon Jun 13, 2011 1:13 am

Re: Possibly still NED...our story to date

Postby rp1954 » Wed Mar 06, 2019 11:31 am

Ultra low CA199, less than 2 units, means that cimetidine cannot not do any good as a long term treatment. I'm not sure about a minimal short course for perioperative, e.g. 800 mg for 5-10 days (BSA for 100 kg). Time to stop the long term cimetidine program. i'd revisit the previous surgeon's Celebrex/celecoxib reasoning for pre-op.

This is why tests done, reported and discussed, sooner than later, are important. Damn the obstructions, -ists everybody, it is up to us. One could have had two years of insight and potential benefit from some other chemistry(s) if the gastroenterologist, surgeon or onc pulled their heads out. Otherwise we have make it a priority, and get it done ourselves.
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. surgeries 4/10 & 5/11; 8 yrs immuno-Chemo for mCRC; now mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

AmyG
Posts: 60
Joined: Tue Dec 25, 2018 8:08 pm

Re: Possibly still NED...our story to date

Postby AmyG » Thu Mar 07, 2019 9:58 am

Is surgery still happening today, with or without a pump? If so, I hope your husband has a quick recovery!
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Possibly still NED...our story to date

Postby NHMike » Thu Mar 07, 2019 4:00 pm

I need to catchup on how this is going. Looks like surgery is soon but I missed the past month here.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
LPL
Posts: 561
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Possibly still NED...our story to date

Postby LPL » Thu Mar 07, 2019 5:07 pm

NHMike wrote:I need to catchup on how this is going. Looks like surgery is soon but I missed the past month here.

Surgery is today NHMike as I understand it, and I hope that everything will work out fine. Keeping my fingers crossed!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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juliej
Posts: 2923
Joined: Thu Aug 05, 2010 12:59 pm

Re: Possibly still NED...our story to date

Postby juliej » Thu Mar 07, 2019 7:09 pm

rp1954 wrote:This is why tests done, reported and discussed, sooner than later, are important. Damn the obstructions, -ists everybody, it is up to us. One could have had two years of insight and potential benefit from some other chemistry(s) if the gastroenterologist, surgeon or onc pulled their heads out. Otherwise we have make it a priority, and get it done ourselves.

Well said. And I totally agree!!!
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 2/1/2019, CEA<1

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Thu Mar 07, 2019 9:47 pm

Eight hour surgery. He’s still in recovery so I haven’t seen him yet. Here’s what we got: rapid onsite specimen evaluation (biopsy) of caudate lobe tumor - benign; of the one suspicious tumor - cancer; nearby that one is two other tumors, too deep to biopsy so were ablated (therefore never know if cancer or not); and another that was resected and later biopsied. Pump placed and flow scan looks good. There was one spot that was leaking outside the liver but D’Angelica was able to ligate that. So, all in all there was one met, two unknowns, and one we will find out. He’s spending the night in the PACU so he will have good continuous careful monitoring throughout the night.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

Punky44
Posts: 224
Joined: Mon Oct 01, 2018 4:29 pm

Re: Possibly still NED...our story to date

Postby Punky44 » Thu Mar 07, 2019 11:30 pm

Praying for a quick recovery! Are you feeling better about everything now?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
Completed 8 rounds of neoadjuvant Folfox 11/5/18 - 2/11/19
Current CEA 6.2

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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LPL
Posts: 561
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Possibly still NED...our story to date

Postby LPL » Fri Mar 08, 2019 3:02 am

mpbser wrote:Eight hour surgery. He’s still in recovery so I haven’t seen him yet. Here’s what we got: rapid onsite specimen evaluation (biopsy) of caudate lobe tumor - benign; of the one suspicious tumor - cancer; nearby that one is two other tumors, too deep to biopsy so were ablated (therefore never know if cancer or not); and another that was resected and later biopsied. Pump placed and flow scan looks good. There was one spot that was leaking outside the liver but D’Angelica was able to ligate that. So, all in all there was one met, two unknowns, and one we will find out. He’s spending the night in the PACU so he will have good continuous careful monitoring throughout the night.

Thank you for update. A lot to take in.. I hope that he can rest without pain & recover and that you(!) also can get some rest.
Sending healing thoughts !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Fri Mar 08, 2019 9:52 am

There was quite the scene yesterday. Extremely stressful. Long story. Will update later.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7


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