Hospitals that install HAI pump?

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ginabeewell
Posts: 25
Joined: Wed Oct 24, 2018 10:30 am

Re: Hospitals that install HAI pump?

Postby ginabeewell » Mon Nov 05, 2018 8:58 am

From a ColonTown thread, institutions referenced that install the pump:

MSK
NIH
Froedert in Milwaukee
OSU in Columbus
WVU Cancer Institute
Cleveland Clinic
Grand Rapids, MI (doesn't say which institution)

The thread - written by a doctor - referenced 14 places in the US but did not list them all, so I'm just piecing a list together from the comments.

From Googling, it looks like U of Wisconsin used to do the Codman pump, but not sure they do the new Medtronic pump.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
10/15/18 CEA 913

mariane
Posts: 630
Joined: Sun Sep 13, 2015 6:16 pm

Re: Hospitals that install HAI pump?

Postby mariane » Mon Nov 05, 2018 12:07 pm

A surgeon, who is implanting HAI pump is answering the question a about the pump on Colontown - facebook based group. First hand info available from him
mom of now 9 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!

ginabeewell
Posts: 25
Joined: Wed Oct 24, 2018 10:30 am

Re: Hospitals that install HAI pump?

Postby ginabeewell » Mon Nov 05, 2018 5:54 pm

Here's a funny resource!

http://dev.haipump.com/haipumpfinder/

Not sure how up to date it is...?
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
10/15/18 CEA 913

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Hospitals that install HAI pump?

Postby heiders33 » Mon Nov 05, 2018 5:59 pm

Wow that’s incredible. I wonder how many of them are adopting and servicing the Medtronic pumps.

I deactivated Facebook several years ago but I might have to rejoin just for this group. I wonder if there’s a way I can filter everything else out....
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

Rock_Robster
Posts: 15
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Hospitals that install HAI pump?

Postby Rock_Robster » Mon Nov 05, 2018 6:06 pm

This is a really helpful thread - thanks to all that have contributed! Does anyone know of any hospitals outside of the US that are skilled in installing or maintaining the HAI pump? I have international insurance but the logistics of travelling to the US for long-term treatment like HAI are not straightforward (as opposed to for, say, a one-off surgery). Thanks
Male age 36 years; Melbourne, Australia
10/2018 DX: Rectal Cancer, 3.5 cm adenocarcinoma, 10 cm from verge. Well/Mod differentiated. T3N1bM1a.
PET/CT/MRI completed
3 suspect lymph nodes (regional) and 4 mets to liver (2 larger, 2 smaller), surgical margins clear
MSI negative, MMR proficient. Lynch likely negative
Mutation in NRAS on codon 13

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Mon Nov 05, 2018 11:08 pm

I’ve been lurking around on Colon town for a week or so. Lots of good info over there. Also another great Facebook group is Liver mets from CRC. Lots of people with the pump on those groups. You get to see that this pump has helped a lot of people but it has also hurt some people as well. A couple of women on some of those groups went into liver failure and need/needed liver trans plants. It puts a great perspective on this treatment. I personally still am in favor of it for myself. Another common issue i have seen regaurding this pump is the mounting of it. Quite a few people had to have it reattached due to installation issues. As far as more Hospitals doing it? NIH is doing a trial, west virgina is starting their pump program, Cleavland Clinic appears to be using them as well as NorthWestern. People have mentioned a hispital in Michigan doing them as well. Im flying to NewYork tomorrow morning to meet with Dr. Kemeny on Wednesday. I will update here when I know more.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

User avatar
cptmac
Posts: 1178
Joined: Mon Nov 19, 2007 3:15 pm
Facebook Username: Dorothy McGrath

Re: Hospitals that install HAI pump?

Postby cptmac » Wed Nov 07, 2018 10:26 pm

FWIW, I had my Medtronic Pump implanted at the University of Minnesota in 2004. I didn't have any issues with it. I drove 16 hours roundtrip for the treatment that would save my life over 14 years ago.

I don't know if the U of MN still implants the pump.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Thu Nov 08, 2018 12:16 am

I had my appointment today at MSK, was told by Dr.Kemeny to go back home and start Folfox by next week. She wants be back on 12/18 for scans and a likely surgery. She wants to see if I can get to a partial resection after 3 rounds of FolFox. And then get the pump. If I cant im guessing im just gonna get the pump. She gave me a great deal of hope today as my ONC at home would not give me any. I truly admire that woman. She is in her 70s and probably very wealthy but doesn’t retire because you can see it’s important for her to help people survive. I believe traveling from Chicago to NewYork once a month or even every 2 weeks will be tough but at the end of the day surviving or even possibly getting a shot at a cure is priceless. Today marks 1 month that I found out I had stage 4 CRC. This disease has taught me some great lessons. The most important one being there are some truly great, caring, and remarkable people in this world. I still can’t believe how many people reached out to offer help in any way they could from a ride to work if I was to sick to donating me airline miles or even offering to rake my leaves. My faith in humanity has been completely restored and I have been truly humbled.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

ginabeewell
Posts: 25
Joined: Wed Oct 24, 2018 10:30 am

Re: Hospitals that install HAI pump?

Postby ginabeewell » Thu Nov 08, 2018 12:28 am

Thanks for the update. Sounds promising!

Did you talk at all about the pump getting filled at NW to cut back on all the travel required? Asking selfishly as it would be tough for me to manage that much travel...
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
10/15/18 CEA 913

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Thu Nov 08, 2018 9:57 am

ginabeewell wrote:Thanks for the update. Sounds promising!

Did you talk at all about the pump getting filled at NW to cut back on all the travel required? Asking selfishly as it would be tough for me to manage that much travel...

Yes I did ask, and its not selfish at all Gina. So they said they have done it with numerous patients and they are going to see if they can work it out with NorthWestern. So I didn’t get a firm yes or No but likely a yes. I think if you are interested in getting a second opinion from them you would have an even better chance as you already are being treated at Northwestern. You still would have to travel to NewYork pretty frequently tho. Just not every two weeks.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.


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