Possibly still NED...our story to date

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mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

Possibly still NED...our story to date

Postby mpbser » Mon Jan 14, 2019 8:09 am

My husband was diagnosed with colon cancer in April 2017. He had a laparoscopic resection in May 2017 to remove a nearly completely obstructing tumor in the lower descending colon that had invaded into the surrounding tissue. 9 of the 52 lymph nodes taken were malignant. The surgeon noted a mass on his liver and wedged it for biopsy. Adenocarcinoma. He has no inherited mutations, normal immunochemistry, and low tumor mutational burden.

A follow-up PET scan showed another tumor at the transverse-ascending colon juncture, so he had a laparoscopic sub-total colectomy in August 2017. This tumor was considered a secondary primary but it had not invaded outside the colon, was T1. The surgeon took 44 lymph nodes and none were malignant. The surgeons had planned to do the liver at the same time as the colectomy. However, when they performed the intraoperative inspection, they saw that the mass was too close to his vasculature and larger than expected. It would have to be done at a later time in an open surgery. The liver surgeon also noted a number of tiny masses about 1 mm in size.

He did four rounds of chemo (XELOX) in fall 2017. The liver tumor shrank in half. In January 2018, a couple days before the liver surgery, he had a second spot (1.5 cm) that the MRI showed on segment 5 biopsied. It was a benign hamartoma. He then had his liver surgery, an open hepatectomy, on segment 4A at the bifurcation of a hepatic blood vessel. The surgeon achieved clear margins. He also ablated all the tiny masses that he saw. The operative notes state: [Dr. Qadan] noted there were six to eight 1-2 mm lesions on the liver surface likely consistent with biliary hamartomas but he burned them with the “Bovie” just in case these were metastases.

No mop-up chemo. He had a clear CT in May 2018, although CTs never picked up on his liver metastasis and is not a good tool for him due to his weight (except for Chest CTs). Therefore, NED. In August 2018, colonoscopy was clear. Still NED. In November 2018, he had another clear CT. However, in early December, a radiologist at Mass General Hospital reported a recurrence in his liver. We sought a second opinion at MSK. MSK's January 4th PET scan did not confirm any hot spots in the liver or anywhere else, only cysts/scarring/benign lesions when comparing to all his other scans. He had a MRI on Friday, January 11th at MSK with their machines, their contrast, their technicians. Now, waiting for those results which will put us at a crossroads. Hopefully still NED. Fingers crossed!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

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

Postby hiker » Mon Jan 14, 2019 11:29 am

Congratulations! Sounds like your husband is NED. And if MSK says he's NED, you can take it as gospel.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Jan 15, 2019 12:19 pm

:( Just heard from MSK. Segment 6 has a met. Going there to meet with surgeon Monday.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

AmyG
Posts: 301
Joined: Tue Dec 25, 2018 8:08 pm

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

Postby AmyG » Tue Jan 15, 2019 1:17 pm

Ah crap. Just the one though?

I wish you guys all the best. Seems like things have really moved in the right direction so far.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Jan 15, 2019 1:26 pm

Yeah, just one small met as far as the nurse who called us is aware. I haven't looked at the MRI report yet.

He has very favorable factors, scoring only a 2 on this scale https://www.mdcalc.com/fong-clinical-ri ... Q#evidence , but a 5 year disease free survival rate of 40% just isn't good enough. A pump can double those odds, so I am really hoping we can work out a way to get one.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

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

Postby Punky44 » Tue Jan 15, 2019 2:48 pm

Sorry about the met :( but it sounds like you are in expert hands! Hope you can get your answers about the pump. Is your husband doing ok?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

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

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Jan 15, 2019 3:32 pm

Thanks for asking, punky. He's still a bit shocked, as am I. The PET results seemed to be so promising. What a let down.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Sun Jan 20, 2019 1:16 pm

mpbser, Best wishes for a good Dr appointment tomorrow.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Mon Jan 21, 2019 10:47 am

We got information that essentially clears up all the confusion. (We are at MSK) There is restricted diffusion on my husband’s MRI of the suspicious spot. I don’t even know if a biopsy is needed now!

Looks like he’ll be getting a pump.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

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

Postby Punky44 » Mon Jan 21, 2019 2:52 pm

Great news!!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

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

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Mon Jan 21, 2019 3:34 pm

mpbser, confusion cleared up.. sounds very good!
Having a plan is great. Wishing you good luck.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Jan 22, 2019 7:18 am

Well, I updated my signature this morning. So much to do to prepare for his surgery. Logistics very difficult.

I will be asking many questions of MSK patients in another thread.

Thank you to everyone who gives us positive thoughts and attention here. Having this forum really helps.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Feb 06, 2019 5:59 pm

Now this is very, very, very strange. I just today happened to notice that the December 3rd MRI report from MGH was in the MSK portal with a MSK radiologist's interpretation. That's not what I found strange. The results are so completely different between the two! MGH says that there is a segment 6 lesion that is 1.3 cm in size, plus another "satellite lesion" too small to measure and to definitely characterize. Looking at the exact same images, MSK says that there is a lesion is segment 6 that is .9 cm in size and a vague area near that with some suggestion of signal abnormality.

Seriously? WHAT THE HECK?
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Fri Feb 08, 2019 1:15 pm

mpbser wrote:Now this is very, very, very strange. I just today happened to notice that the December 3rd MRI report from MGH was in the MSK portal with a MSK radiologist's interpretation. That's not what I found strange. The results are so completely different between the two! MGH says that there is a segment 6 lesion that is 1.3 cm in size, plus another "satellite lesion" too small to measure and to definitely characterize. Looking at the exact same images, MSK says that there is a lesion is segment 6 that is .9 cm in size and a vague area near that with some suggestion of signal abnormality.

Seriously? WHAT THE HECK?

Are you wiser regarding this now mpbser? Have you asked MSK?
It does sound like a big discrepancy between 2 people reading the same MRI.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Feb 08, 2019 6:24 pm

Yes, I actually spoke with his liver surgeon today who cleared this up. He said that the MSK radiologist reading the January 11th scan was comparing it to his interpretation of the December 3rd scan. Meaning, he was seeing 1.3 cm on January 11th compared to .9 from December 3rd. That explains why he concluded there was increase. Makes more sense now.

The MSK radiologist could just be looking at it in the same light as the MGH did, now measuring it to be 1.3 with it unchanged!

But it's good to know what the protocol is, either way.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


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