Possibly still NED...our story to date

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radnyc
Posts: 369
Joined: Tue Apr 06, 2010 6:32 pm

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

Postby radnyc » Fri Mar 08, 2019 10:45 am

I believe you made the right decision. You're in the best hands in the cancer business. Now, once he's healed up and moving around I recommend you lay off all the supplements at least for 6 months. And as your husband came in obese into this situation, concentrate in weight loss and nutrition. Organic, less meats and MOVE, walk, run, etc.! Best of luck to y'alls.
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

Milk Tea
Posts: 29
Joined: Wed Feb 13, 2019 1:14 pm

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

Postby Milk Tea » Fri Mar 08, 2019 12:37 pm

Just want to remind you to take extra care of yourself too during this stressful time. You need to rest well and eat well and have some fresh air outside to have both physical and mental strength to take care of your husband. We caregivers often forget how important that is. Best of luck to you guys!
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

DarknessEmbraced
Posts: 3308
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Sat Mar 09, 2019 10:39 am

I hope his recovery goes well!*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

mpbser
Posts: 910
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sun Mar 10, 2019 8:02 am

Not sure if it's normal for some of these labs to get worse before they get better. Plus, not sure if the continuous drop in plasma inorganic phosphorous should be a concern.

Today's ALT: 450, AST: 146. ALK Phos still great but up by 10 to 74. Albumin 3.4 (stable, same as yesterday), Bilirubin 1.4 (still high but improving). BUN now normal. Phosphorous low 1.4. CBC results now somewhat out of whack: Abs mono 03/10/2019 1.5 K/mcL [0.0-1.3 K/mcL] High, 03/09/2019 1.5 K/mcL High, 03/08/2019 1.0 K/mcL Normal, 03/07/2019 1.4 K/mcL High. Immature granulocytes: 03/10/2019 0.7 % [0.0-0.6 %] High, 03/09/2019 0.6 %, 03/08/2019 0.4 %, 03/07/2019 0.3 %. Hematocrit: 03/10/2019 35.7 % [37.5-49.3 %] Low, 03/09/2019 36.4 % Low, 03/08/2019 39.0 %, 03/07/2019 38.8 %. Hemoglobin: 03/10/2019 12.0 g/dL [12.5-16.2 g/dL] Low, 03/09/2019 12.1 g/dL, 03/08/2019 13.2 g/dL, 03/07/2019 13.1 g/dL.

Going to look at his labs following his past three surgeries for comparison.

Thankfully, the liver enzymes are headed in the right direction although I am not sure if the rise in Alk phos could be an issue.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

mpbser
Posts: 910
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sun Mar 10, 2019 8:13 am

Oh great. Just read that correction of acute hypophosphataemia tends to leave no long-term complications but failure to recognise and treat an acute, severe situation can lead to fatality.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

mpbser
Posts: 910
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Mar 12, 2019 4:34 pm

So the pump flow scan went well and I heard the only anomaly, albeit a common one, is that a couple of liver lymph nodes lit up. I don’t know what this means. All I know is that it is something that Dr. Kemeny addresses. A whirlwind of a day trying to get him discharged in the middle of rush hour.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

User avatar
LPL
Posts: 649
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Tue Mar 12, 2019 5:22 pm

mpbser wrote:So the pump flow scan went well and I heard the only anomaly, albeit a common one, is that a couple of liver lymph nodes lit up. I don’t know what this means. All I know is that it is something that Dr. Kemeny addresses. A whirlwind of a day trying to get him discharged in the middle of rush hour.

Sounds as you are on your way. I guess it will feel wonderful coming home again :) Best wishes for good resting and healing!
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->Jan-19 mets to lung
:!: 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 lung met

mpbser
Posts: 910
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Mar 13, 2019 1:54 pm

Thanks to everyone for the well wishes. I started a new thread about this in case people with pump experience have relevant information to share.

Here it is: So the flow scan test that was done yesterday showed leakage into liver lymph nodes. Dr. D’Angelica did not seem overly concerned but said that it is Dr. Kemeny’s call whether or not HAI pump chemo can be given with it as is. We don’t know if this is something that can be “repaired” as in removing the nodes and thus removing the condition that will lead to leakage. (For those unfamiliar with our story, he just had surgery last Thursday to implant the pump. Chemo scheduled to begin in April.) We don’t know what risks there may be if FUDR gets into these nodes. Any ideas?
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

User avatar
LPL
Posts: 649
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Wed Mar 13, 2019 4:48 pm

mpbser wrote:Thanks to everyone for the well wishes. I started a new thread about this in case people with pump experience have relevant information to share.

Here it is: So the flow scan test that was done yesterday showed leakage into liver lymph nodes. Dr. D’Angelica did not seem overly concerned but said that it is Dr. Kemeny’s call whether or not HAI pump chemo can be given with it as is. We don’t know if this is something that can be “repaired” as in removing the nodes and thus removing the condition that will lead to leakage. (For those unfamiliar with our story, he just had surgery last Thursday to implant the pump. Chemo scheduled to begin in April.) We don’t know what risks there may be if FUDR gets into these nodes. Any ideas?

There is always something...sigh. I hope you will get replies from people with experience! Sending good vibes.
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->Jan-19 mets to lung
:!: 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 lung met

mpbser
Posts: 910
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sat Mar 16, 2019 9:31 am

So, here is the latest.

What a long week and half!!! I don't know what has been the most difficult: the drama during surgery regarding the conflicting decisions about the pump between the oncologist and surgeon (a story yet to be told), the last minute change of plans with a friend leaving me in a lurch (she was supposed to help me on the day of his discharge), my brakes going on the way out of the hospital to where we were staying in CT, getting an important phone call from the media in the middle of discharge (thank goodness the story turned out rather well), or planning this coming Wednesday's appointments. I honestly don't know how I got through the past nine days without completely breaking down. Thank god for family and friends. I could not have done it without them.

So, there was an appointment for a CT scan on the MSK portal that did not make sense to me as CT scans do not accurately show spots in his liver. Dr. Kemeny's office, when I asked about this appointment, seeking clarification about it, blurted back through the portal: "The CT scan is a baseline scan. It is required after surgery and yes you will get filled." Nothing about needing to view his chest or anything and sounded routine for the average patient (CTs being the norm for most stage IV colon cancer patients, except in people such as Michael for whom liver lesions cannot be seen in CT). As CT is only good for him when the chest needs to be analyzed, I wrote back reminding them that it was inappropriate in his case due to his habitus, except for surveillance of the chest. They deleted the appointment.

This morning, I saw that the report from Tuesday's flow scan test was uploaded to the portal last night. It says that he has new bilateral small pleural effusions and compressive atelectasis (collapsed lung). Apparently, according to my Dr. Googling, this is very common in very high BMI people who had upper abdominal surgery. Breathing and coughing exercises help resolve this, although no one had mentioned any of this at all to us.

I hand delivered his ECGs from day of surgery and day after to his local cardiologist yesterday (their fax was not working) with the plan to follow up with him on Monday. My husband and I spoke last night about how he had left his follow-up appointment with him unscheduled for the time being, so perhaps one is warranted in this case. Now that I have this information about the pleural effusions and compressive atelectasis, I think so. He (local cardiologist) can order a chest CT if necessary, thus avoiding the issue of dealing with MSK CT appointments. They are ALWAYS many hours behind at the Manhattan location at which they scheduled him.

It would have been nice if his MSK cardiologist responded to my inquiry on Thursday: "Given the fact that this post liver surgery ECG is abnormal, should we have a follow up ECG done by *****’s local cardiologist?" She had insisted, against the surgeon's wishes, that they do intraoperative/perioperative ECG monitoring (monitor put into his left arm artery, bruising him all up something fierce) to make sure his heart was OK during and immediately after surgery, but I guess that is where her responsibility ends. Who oversees his cardiopulmonary issues now?

No idea. I know that our local hospital blood lab will do blood draws on "foreign" orders, e.g. from MSK, so I am now wondering if local radiology department will do the same. Will be a very busy Monday.

I don't think anyone has a clue what we are dealing with. It's extraordinarily difficult being far away from MSK, with a doctor there whose time is scarce and communication abysmally poor, combined with a local primary care doctor whose office doesn't want "to step on toes" or put in orders for things "that specialists take care of." No one is overseeing my husband's care but me, so I HAVE to ask questions. I don't care if I seem like a bitch. This is my husband's life in my hands.
Last edited by mpbser on Sat Mar 16, 2019 12:00 pm, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

radnyc
Posts: 369
Joined: Tue Apr 06, 2010 6:32 pm

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

Postby radnyc » Sat Mar 16, 2019 11:40 am

mpbser wrote:So, here is the latest.

What a long week and half!!! I don't know what has been the most difficult: the drama during surgery regarding the conflicting decisions about the pump between the oncologist and surgeon (a story yet to be told), the last minute change of plans with a friend leaving me in a lurch (she was supposed to help me on the day of his discharge), my brakes going on the way out of the hospital to where we were staying in CT, getting an important phone call from the media in the middle of discharge (thank goodness the story turned out rather well), or planning this coming Wednesday's appointments. I honestly don't know how I got through the past nine days without completely breaking down. Thank god for family and friends. I could not done it without them.

So, there was an appointment for a CT scan on the MSK portal that did not make sense to me as CT scans do not accurately show spots in his liver. Dr. Kemeny's office, when I asked about this appointment, seeking clarification about it, blurted back through the portal: "The CT scan is a baseline scan. It is required after surgery and yes you will get filled." Nothing about needing to view his chest or anything and sounded routine for the average patient (CTs being the norm for most stage IV colon cancer patients, except in people such as Michael for whom liver lesions cannot be seen in CT). As CT is only good for him when the chest needs to be analyzed, I wrote back reminding them that it was inappropriate in his case due to his habitus, except for surveillance of the chest. They deleted the appointment.

This morning, I saw that the report from Tuesday's flow scan test was uploaded to the portal last night. It says that he has new bilateral small pleural effusions and compressive atelectasis (collapsed lung). Apparently, according to my Dr. Googling, this is very common in very high BMI people who had upper abdominal surgery. Breathing and coughing exercises help resolve this, although no one had mentioned any of this at all to us.

I hand delivered his ECGs from day of surgery and day after to his local cardiologist yesterday (their fax was not working) with the plan to follow up with him on Monday. My husband and I spoke last night about how he had left his follow-up appointment with him unscheduled for the time being, so perhaps one is warranted in this case. Now that I have this information about the pleural effusions and compressive atelectasis, I think so. He (local cardiologist) can order a chest CT if necessary, thus avoiding the issue of dealing with MSK CT appointments. They are ALWAYS many hours behind at the Manhattan location at which they scheduled him.

It would have been nice if his MSK cardiologist responded to my inquiry on Thursday: "Given the fact that this post liver surgery ECG is abnormal, should we have a follow up ECG done by *****’s local cardiologist?" She had insisted, against the surgeon's wishes, that they do intraoperative/perioperative ECG monitoring (monitor put into his left arm artery, bruising him all up something fierce) to make sure his heart was OK during and immediately after surgery, but I guess that is where her responsibility ends. Who oversees his cardiopulmonary issues now?

No idea. I know that our local hospital blood lab will do blood draws on "foreign" orders, e.g. from MSK, so I am now wondering if local radiology department will do the same. Will be a very busy Monday.

I don't think anyone has a clue what we are dealing with. It's extraordinarily difficult being far away from MSK, with a doctor there whose time is scarce and communication abysmally poor, combined with a local primary care doctor whose office doesn't want "to step on toes" or put in orders for things "that specialists take care of." No one is overseeing my husband's care but me, so I HAVE to ask questions. I don't care if I seem like a bitch. This is my husband's life in my hands.


All of that pretty much resembles what I had after my surgery. Normal, mostly, for what he just went through.
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: 910
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sat Mar 16, 2019 12:00 pm

Were you instructed to do the spirometer breathing upon discharge?
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

radnyc
Posts: 369
Joined: Tue Apr 06, 2010 6:32 pm

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

Postby radnyc » Sat Mar 16, 2019 2:50 pm

mpbser wrote:Were you instructed to do the spirometer breathing upon discharge?


Yes
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: 910
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sat Mar 16, 2019 3:20 pm

My husband was not and I have a real problem with that. Makes my blood boil.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

Gravelyguy
Posts: 169
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Sat Mar 16, 2019 5:33 pm

I had my liver resection done at Mayo-Rochester. I was not given a spirometer. I thought it was strange as I have been a care giver to several family members post surgery and they all had to use one, so I asked.

My nurse said that they had done research and had found that normal breathing was just as effective. I did not have any post surgery lung issues, but thought I would share what I was told.

Hope your husband has a speedy recovery!


Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0


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