Pump people recurrence question

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mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Pump people recurrence question

Postby mpbser » Fri Feb 08, 2019 6:27 pm

For all those people with HAI pumps == after your six months or so of FUDR treatment, did you have a recurrence that you had to have more FUDR to clear up?

Asking because my husband is wondering about pump removal after FUDR treatment is done. I know Dr. Kemeny likes to leave it in for at least two years "just in case" but what are the chances of that "case" happening?
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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GrouseMan
Posts: 811
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Pump people recurrence question

Postby GrouseMan » Fri Feb 08, 2019 6:33 pm

I would say if Dr K typically leaves them in for two years afterwards, she has seen enough cases justifying that recommendation. Its a good bet that she chose that time period for a reason. What's the harm? Leave it be.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Pump people recurrence question

Postby mpbser » Fri Feb 08, 2019 6:35 pm

Driving 4+ hours each way to/from NYC every two weeks is the issue. This is a huge commitment. If there is a small chance of recurrence, then my husband would have it removed after treatment. We need to make this decision fairly quickly and it's difficult without data.
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: 375
Joined: Tue Apr 06, 2010 6:32 pm

Re: Pump people recurrence question

Postby radnyc » Fri Feb 08, 2019 7:42 pm

I thought 2 years too, but when the 2 years came, onc told me it's 5 years. So, I waited another 3 years. I hated having the thing in me but, it was worth waiting. Most recurrences happen 1-2 years after NED surgery, what's another 3 years just in case? After chances of recurring drop dramatically. Go with what Kemeny suggests, don't be surprised if she tells you 5 years.
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: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Pump people recurrence question

Postby mpbser » Fri Feb 08, 2019 8:00 pm

This is easy for people with a Codman pump to say, given the fact that you have 6-8 weeks between servicing. For us who have no choice other than to go with the Medtronic, with its every 2 weeks' servicing, it really is a different decision.
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: 375
Joined: Tue Apr 06, 2010 6:32 pm

Re: Pump people recurrence question

Postby radnyc » Fri Feb 08, 2019 8:14 pm

mpbser wrote:This is easy for people with a Codman pump to say, given the fact that you have 6-8 weeks between servicing. For us who have no choice other than to go with the Medtronic, with its every 2 weeks' servicing, it really is a different decision.



None of this is ever easy my friend.

The Codman pump was a superior product, affordable and low maintenance. I blame it’s demise on greed on the part of Johnson and Johnson and on a lack of foresight on the part of MSK. They easily could have them manufacture the device for them. MSK is a billion dollar institution.
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

AmyG
Posts: 216
Joined: Tue Dec 25, 2018 8:08 pm

Re: Pump people recurrence question

Postby AmyG » Fri Feb 08, 2019 9:16 pm

I don't envy your position with the logistics. And here I complain about an hour and a half one way trip!

I'm going to go out on a limb and assume there is no place closer to home to go every two weeks for maintenance? Because that would be way too easy, right? :roll:

I really hope you guys are able to find a solution.
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

mariane
Posts: 669
Joined: Sun Sep 13, 2015 6:16 pm

Re: Pump people recurrence question

Postby mariane » Fri Feb 08, 2019 9:50 pm

I am approaching 3 years NED with the pump and I will keep it at least until 5 years after surgery. I talked to my surgeon about their statistics. He told me that they have over 50% of recurrences but they can manage most of them using the pump and surgeries. It is just safer to keep the pump. I had complete pathological response which theoretically decreases my chance to have recurrence. I fly to NY from Atlanta. It is not fun with small kids but I have this time with my kids. It is a great time. I wish you the best of luck!
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

User avatar
ginabeewell
Posts: 268
Joined: Wed Oct 24, 2018 10:30 am

Re: Pump people recurrence question

Postby ginabeewell » Sat Feb 09, 2019 12:18 am

You may be able to get the pump serviced locally once the chemo is done?

MSK has authorized us to get the pump flushed locally monthly so we only have to come in monthly for the chemo. But you'd obviously need to have a local option that has a pump program or is willing to learn. (Luckily we do, it's just not as developed as MSK's.)

Even if I had to keep flying monthly, I think I would do that and keep the pump in for the recommended time. Once you set the expectation and get into a rhythm, I feel like stuff like that gets easier to manage with life.
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
7/19/18: 1st of 2 liver resections

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Pump people recurrence question

Postby mpbser » Sat Feb 09, 2019 7:07 am

Unfortunately, only in rare situations like yours Gina will Dr. K agree to have any other place do the servicing. MSK's West Harrison location is three hours away under normal weather and traffic conditions, so at least we would not have to always go into Manhattan.

I am glad to have information about recurrences such as the 50% statistic. Now I am wondering what the breakdown is for those who get the pump. What #s have multiple mets compared to only one, such as my husband.
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

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Pump people recurrence question

Postby cbsmith » Sat Feb 09, 2019 8:58 am

Even if you do have to keep the pump,for 2 or up to 5 years, that doesn’t mean down the road 6 months, a year, 18 months, etc that there won’t be other hospitals servicing the pumps that are closer to your location. In the meantime itmsucks but it sounds like you don’t have much of a choice. Nothing about chemo is easy and getting the pump flushed is one of those things. Hopefully once he is done with the HAI treatment the flushing is on an off week from systemic chemo and it is just one person traveling for the day to get it flushed.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

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

Re: Pump people recurrence question

Postby hiker » Sat Feb 09, 2019 10:10 am

mpbser wrote:Unfortunately, only in rare situations like yours Gina will Dr. K agree to have any other place do the servicing.


Not sure that's correct. Dr. K won't allow other facilities to fill the pump with chemo, but she usually has no problem at all letting others service it with saline.

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: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Pump people recurrence question

Postby mpbser » Sat Feb 09, 2019 11:50 am

It is correct. I just spoke with her yesterday about it.
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: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Pump people recurrence question

Postby mpbser » Sat Feb 09, 2019 11:54 am

Good point, cbsmith. That is IF the medtronic-codman catheter trial goes well and they are still being used. To date, MSK has only implanted about 60 of them starting about seven months ago. Someone on one of the facebook groups, let's call her "AA", recently reported that her pump is defective/damaged/or otherwise not working (she didn't really provided details as she herself does not know what is going on with it). She had hers put in about seven months ago so she is one of the first. She's been in and out of MSK all week and returns Monday for a thorough review.

I know only about a dozen or so people personally with the medtronic-codman catheter and all of them have been recently implanted. AA is the only one I have been in contact with who had it placed more than a couple months ago. Only time will tell whether the others with have similar problems as to what she is experiencing.

While I realize that these particular pumps have been used in thousands of spines, the question of its safety with the codman adapted catheter remains to be answered.
Last edited by mpbser on Sat Feb 09, 2019 12:20 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

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Pump people recurrence question

Postby mpbser » Sat Feb 09, 2019 12:16 pm

I spoke with my aunt who has been a nurse for 47 years this morning about our situation. When I told her that MSK has implanted this pump/adaptation implanted in about 60 patients so far and the trial started this past summer, she was extremely negative about going through with it. She kept saying SIXTY?! ONLY SIXTY?! and asking if my husband wanted to be a guinea pig over and over and over.

Sigh.
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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