Another NED question: PUMP v. NO PUMP?

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mpbser
Posts: 945
Joined: Wed Apr 19, 2017 11:52 am

Another NED question: PUMP v. NO PUMP?

Postby mpbser » Wed Feb 13, 2019 8:20 am

I have been visiting this forum for about two years now. From what I have noticed, without paying all that much attention because we did not expect to be at this place in time with a recurrence and considering a pump, the majority of people here with Stage IV who have been NED for over five years have had a HAI pump. That was just an impression but now I really want to see if my impression was correct. So here are my questions:

1) For those who are NED over five years, can you please chime in so I can see your signatures?

2) If you had a HAI pump but it's not in your signature, please note that, thanks.

3) For good measure, can those who have been NED over two years (and still are currently) please do the same?

Thank you in advance. I will do a tally that I think will be helpful for everyone considering a pump.
Last edited by mpbser on Wed Feb 13, 2019 3:44 pm, edited 1 time in total.
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

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Another NED question: PUMP v. NO PUMP?

Postby Pyro » Wed Feb 13, 2019 10:26 am

My liver had 13 tumors, it’s been clear for about 2 years, no pump.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

User avatar
Jack&KatiesMommy
Posts: 605
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Another NED question: PUMP v. NO PUMP?

Postby Jack&KatiesMommy » Wed Feb 13, 2019 10:27 am

NED (in liver) since 2013
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Ehut
Posts: 220
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Another NED question: PUMP v. NO PUMP?

Postby Ehut » Wed Feb 13, 2019 10:43 am

NED for 6.5 years, no pump. 6 liver tumors originally.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 7+ years and counting!

User avatar
betsydoglover
Posts: 974
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Another NED question: PUMP v. NO PUMP?

Postby betsydoglover » Wed Feb 13, 2019 11:07 am

liver clear for 13 years - no pump.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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

Re: Another NED question: PUMP v. NO PUMP?

Postby LPL » Wed Feb 13, 2019 12:18 pm

3 liver mets (resectable at dx) open surgery Sept 1st 2016.
Chemo 4 before and 8 after surgery.
Nothing bad has been seen on scans in liver since then.
(Latest scans, CT & PET, January 2019).
No pump.
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

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

Re: Another NED question: PUMP v. NO PUMP?

Postby Milk Tea » Wed Feb 13, 2019 3:05 pm

Hi mpbser,
Thank you for starting this post. We would love to learn others experiences about different ways of handle liver mets.
My husband had 10+ liver mets at dx September 2016, Liver resection January 2017, no pump, our cancer center doesn't offer pump ( one of the top ranking teaching hospital) and we didn't know about this forum and didn't have the knowledge of HAI pump at that time. We are so grateful he is NED since liver surgery.
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

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ginabeewell
Posts: 392
Joined: Wed Oct 24, 2018 10:30 am

Re: Another NED question: PUMP v. NO PUMP?

Postby ginabeewell » Wed Feb 13, 2019 3:13 pm

I'm not sure how useful a tally is among just those NED. The pump is still relatively rare - only 300 a year implanted - so guessing most NED patients did not have one.

The real question I have been asking myself is survival versus not - and does the pump improve the chances of survival. That data is already collected and indicates yes. Those who did not survive are not here to be tallied. : (

Still very interested to hear stories but just noting that I'm not sure the data you've sought is going to be the most useful in driving a decision about the pump.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

mpbser
Posts: 945
Joined: Wed Apr 19, 2017 11:52 am

Re: Another NED question: PUMP v. NO PUMP?

Postby mpbser » Wed Feb 13, 2019 3:44 pm

It will for my husband. When we started seriously considering the pump when we learned of his diagnosis, one of the things I said to him about this forum caught his attention: Among those stage IV who are NED 5+ years, it appears that the majority of these people have had HAI pump treatment.

So far, according to my excel spreadsheet containing the data as I see it, my impression seems correct. Final figures will be published here when I finish.
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
ginabeewell
Posts: 392
Joined: Wed Oct 24, 2018 10:30 am

Re: Another NED question: PUMP v. NO PUMP?

Postby ginabeewell » Wed Feb 13, 2019 4:41 pm

Got it. Hopefully the data falls that way!

I'm just worried that the final number you get will suggest that more people get to NED without the pump than with the pump. But that's a metric mainly of how many pumps get used vs not, not a measure of whether the pump works better than no pump. It validates that you don't need a pump to get to NED, but not that you're more likely to get to NED with or without one.

(Not to mention you've got a skewed sample here of those who are more knowledgeable and proactive than the average patient.)

Sorry, I'm sure it's the impact of 20+ years of reading research results making me cautious on your behalf!!

Somehow I feel vested in your husband deciding to get a pump. : )

mpbser
Posts: 945
Joined: Wed Apr 19, 2017 11:52 am

Re: Another NED question: PUMP v. NO PUMP?

Postby mpbser » Wed Feb 13, 2019 4:53 pm

Gina, I like the cut of your jib.

As far as this very unscientific study I am doing goes, I see it as randomized and blind and placebo-controlled as it can get. I have 28 "subjects" at the moment and hoping to increase my size in the next couple of days.

I will keep the forum posted!
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

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: Another NED question: PUMP v. NO PUMP?

Postby hopie » Thu Feb 14, 2019 7:29 am

I don't have any response to the original question (though I hope my mom will be able to join team no-pump!) but I wanted to say that this topic is helpful for those of us for whom pump is not an option. I'm really happy that the pump is saving so many lives, but I was also getting the feeling that survival was kind of dependent on it. It made me happy to see that other paths are possible too!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

mpbser
Posts: 945
Joined: Wed Apr 19, 2017 11:52 am

Re: Another NED question: PUMP v. NO PUMP?

Postby mpbser » Thu Feb 14, 2019 8:03 am

I plan to post the results no later than Saturday. Keep tuned and please keep sharing your information. The larger the data set, the better!
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: 945
Joined: Wed Apr 19, 2017 11:52 am

Re: Another NED question: PUMP v. NO PUMP?

Postby mpbser » Thu Feb 14, 2019 8:18 am

Looks like my original impression was incorrect... but still collecting data.

Here is the breakdown thus far:

In the 2-4 years NED range, 3 of 13 have had HAI
In the 5+ years NED range, 8 of 22 have had HAI
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

radnyc
Posts: 427
Joined: Tue Apr 06, 2010 6:32 pm

Re: Another NED question: PUMP v. NO PUMP?

Postby radnyc » Thu Feb 14, 2019 3:11 pm

8.5 years, with HAI Pump.

That being said, PLENTY of people have gone to NED and cure without the pump for years. In fact, there a probably thousands who've been cured with only surgery dating back to the 80's. Surgery is the main thing that leads to cure or long term NED, I've always believed that. The pump and chemo are there to keep things in check. Do what you feel is right, personally I think the pump has helped in my remaining NED, but it was Dr. Jarnagin at MSK who expertly removed my liver tumors, he gets 80% of the credit, 20% goes to the pump and the crappy chemo.

Cheers!
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


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