Possibly still NED...our story to date

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mpbser
Posts: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sat Mar 16, 2019 5:48 pm

I guess, if you can do deep breathing without the guidance. I personally know that I find apps such as Calm very useful for working on my breathing which tends to be very shallow.
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: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Mar 21, 2019 6:26 am

My husband’s 12:30 bloodwork results yesterday included elevated platelets, white blood cells, carbon dioxide, and neutrophils. At around 5:30, we finally got in to see oncologist for his 1:15 appointment. We had to ask about this as it was overlooked. Oncologist’s assistant was more concerned about why my husband is taking magnesium supplements. I was too tired by that time to point out to her that the daily bloodwork checking his magnesium levels during the time he was in the hospital, when he was off of the home supplements, came back below normal. After my husband pointed out to them the bloodwork from earlier that day, they had him to repeat bloodwork which showed even higher levels of the above. Then they had him do a urinalysis and blood culture from the arm and the pump. The urinalysis does not show an infection. Still waiting on the blood work.
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: 368
Joined: Tue Apr 06, 2010 6:32 pm

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

Postby radnyc » Thu Mar 21, 2019 7:51 am

You need to lay off the supplements until he’s fully healed. Not wise.
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: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Mar 21, 2019 8:15 am

First, upon discharge, he was instructed to resume all of his supplements by the medical professionals. Second, all the rest of his blood work is phenomenal, including his liver enzymes. Third, the aetiology of these particular elevated labs is either infection or stress. Fourth, supplements did not cause his infection or stress.
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

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LPL
Posts: 635
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Thu Mar 21, 2019 11:51 am

mpbser wrote:My husband’s 12:30 bloodwork results yesterday included elevated platelets, white blood cells, carbon dioxide, and neutrophils. At around 5:30, we finally got in to see oncologist for his 1:15 appointment. We had to ask about this as it was overlooked. Oncologist’s assistant was more concerned about why my husband is taking magnesium supplements. I was too tired by that time to point out to her that the daily bloodwork checking his magnesium levels during the time he was in the hospital, when he was off of the home supplements, came back below normal. After my husband pointed out to them the bloodwork from earlier that day, they had him to repeat bloodwork which showed even higher levels of the above. Then they had him do a urinalysis and blood culture from the arm and the pump. The urinalysis does not show an infection. Still waiting on the blood work.

Wow that was a long wait for an 1:15 appointment! Must have been especially hard for a newly operated on patient. :cry:
Sorry to hear about the elevated blood tests and a possible infection. No fever? I hope you will soon find an explanation and that if it is a problem, that it can be easily treated.
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: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Mar 21, 2019 1:29 pm

Yesterday was especially hard because we had not gotten much sleep that morning due to lots of commotion at the place we stayed the night before. We were woken up at 4:45am and didn't get much sleep after that. It was a very long, tiring day, but thankfully we both slept well last night and this morning. He had an appointment tomorrow morning at 8am at our local hospital to have his staples removed that was thankfully rescheduled by the surgeon to 2pm. This way, he can sleep until 9am in the morning before working, then appointment, and back to work.
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

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LPL
Posts: 635
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Thu Mar 21, 2019 1:38 pm

mpbser wrote:Yesterday was especially hard because we had not gotten much sleep that morning due to lots of commotion at the place we stayed the night before. We were woken up at 4:45am and didn't get much sleep after that. It was a very long, tiring day, but thankfully we both slept well last night and this morning. He had an appointment tomorrow morning at 8am at our local hospital to have his staples removed that was thankfully rescheduled by the surgeon to 2pm. This way, he can sleep until 9am in the morning before working, then appointment, and back to work.

Is he back at work already? It took quite a few weeks before hubby was ‘fit for fight’ after his liver surgery. But of course he was older and had stopped working..
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: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Mar 21, 2019 1:44 pm

He went back to work a week after surgery.
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: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Apr 03, 2019 1:02 pm

Technically, now that surgery removed the one met with VERY clear margins -- multiple centimeters' worth -- and post-surgery CTs and MRI from Monday, April 1st show no disease, my husband is back to "NED" status.

He started HAI chemo a couple days ago since his labs were essentially back to normal.

We return to MSK in two weeks to have the pump drained and filled with saline. He will then have his "systemic chemo" (folfiri). He will have the port pump "disconnected" two days later at our local cancer center because we don't want to do it ourselves. There is a risk of infection so my husband wants to leave it to the professionals to do.

For those who have done folfiri and/or 5-FU, is it correct that the pump is connected for 48 hours and disconnect can take place after 48 hours have passed since the "start" time of treatment? I need to schedule the local cancer center appointment and don't know if it can be scheduled for 10:30 am on a Wednesday when the "folfiri" treatment has been scheduled for 10:30 am on the previous Monday. My husband is indisposed every Wednesday afternoon with a work obligation, so information about disconnect time would be greatly appreciated.

Starting a new thread with this question as it may catch more attention.
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

Punky44
Posts: 305
Joined: Mon Oct 01, 2018 4:29 pm

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

Postby Punky44 » Wed Apr 03, 2019 7:07 pm

I replied to your other thread but just wanted to say we left the disconnect to the pros as well—I’m surprised how many people are trained to do it themselves and I commend them but I am too leery with needles (the irony that I am basically my mom’s illestomy nurse, though!)

Anyway, happy your husband is back to NED!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at 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

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

mpbser
Posts: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Apr 04, 2019 7:43 am

Thanks, punky.
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
ginabeewell
Posts: 221
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Thu Apr 11, 2019 1:59 pm

mpbser wrote:We return to MSK in two weeks to have the pump drained and filled with saline. He will then have his "systemic chemo" (folfiri). He will have the port pump "disconnected" two days later at our local cancer center because we don't want to do it ourselves. There is a risk of infection so my husband wants to leave it to the professionals to do.


Just popping on here to share our experience working with Northwestern to flush the pump. I know at one point you were trying to determine if this could happen at a hospital nearer to where you are.

MSK called my local oncologist to discuss how best to facilitate the flush. Northwestern apparently had experience with the Codman pump but not the Medtronic yet. So they are sending a Medtronic rep to Northwestern next week to train the nurses. And the rep will return on the 22nd to oversee my first flush there.

The nurse at MSK explained that the main difference between Codman and Medtronic pumps is that the Codman port was convex and the Medtronic is concave - so it takes a little maneuvering to make sure that the Medtronic is being filled properly - you need to jiggle the needle around a bit until you find the dip. But she told me that the way they learned how to do it is exactly what's happening at Northwestern - the rep came and trained the two head nurses, and those nurses trained everyone else.

At any rate, I'm pretty sure none of this would have happened had I not contacted my oncologist and essentially requested that they get someone trained up. But once we made the request, everything came together in a matter of days! So you may have a similar experience with your local oncologist if you make the request. Good luck and hope your husband is doing well!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

mpbser
Posts: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Apr 11, 2019 3:38 pm

My husband's local oncologist is very hands-off these days because he isn't getting any chemo ("treatment") under her care. She currently "isn't treating him" says her office staff to me, although he does go there for port flushes and, as of next week, disconnects. Because of this status with her, I don't think that she would agree to have him do the flushes there. She wouldn't even order the labs for a liquid biopsy we requested.

I will try, in any case, because it would be awesome to have the post-treatment servicing done locally. Your experience will be so helpful in navigating this! Thanks so much for this information!!!Thanks so much for this information!!!
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

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ginabeewell
Posts: 221
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Thu Apr 11, 2019 4:23 pm

mpbser wrote:My husband's local oncologist is very hands-off these days because he isn't getting any chemo ("treatment") under her care. She currently "isn't treating him" says her office staff to me, although he does go there for port flushes and, as of next week, disconnects. Because of this status with her, I don't think that she would agree to have him do the flushes there. She wouldn't even order the labs for a liquid biopsy we requested.

I will try, in any case, because it would be awesome to have the post-treatment servicing done locally. Your experience will be so helpful in navigating this! Thanks so much for this information!!!Thanks so much for this information!!!


Well if they can flush him, she could do the systemic chemo, right? Dr Kemeny would still call the shots on dosage etc, but the revenue for the systemic chemo would go to the local oncologist. And you would only have to go to MSK once a month.

I guess now I’m feeling lucky my local onc has been so agreeable with all this... my fingers are crossed that you find a good solution too.

I’ve been telling Dr Stein that she needs to establish a pump practice in the Midwest so the treatment is more widely available. I came into her practice with a virtual death sentence, so if the pump works for me, I think she will be interested.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

mpbser
Posts: 905
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Apr 12, 2019 6:19 am

"Well if they can flush him, she could do the systemic chemo, right? Dr Kemeny would still call the shots on dosage etc, but the revenue for the systemic chemo would go to the local oncologist. And you would only have to go to MSK once a month."

Yes, and this would be awesome. Originally, before pump implantation and starting treatment, my husband was against having our local cancer center touch his pump at all. They are not the most competent bunch of people there. However, there is one chemo nurse who has many years of experience whom he trusts.

I spoke with my husband yesterday about your success in having your local team trained. I asked him if he has changed his mind about having the locals do the maintenance, now that he has the pump in and it's been accessed a few times now. He does feel differently about it since he knows what is involved. (Originally, we were told by Dr. Kemeny that the pump would be implanted in his abdomen, that it would be very difficult to access due to his size, and that only her best chemo nurse should touch it. However, Dr. D'Angelica placed it in his chest cavity and it is closer to the skin surface in this location.) So, my husband would trust the one particular nurse here in town with it.

We plan on making an appointment with his local oncologist to discuss having her staff trained and moving forward with having local flushing/maintenance and perhaps also systemic.

Thank you again!
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


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