Hospitals that install HAI pump?

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cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Tue Oct 30, 2018 8:40 am

heiders33 wrote:Cartech, do you know your KRAS mutation? If you are KRAS wild, you may be able to get into Dr Kemeny's clinical trial, which uses the Codman pump and only has to be serviced every six weeks. Did they say anything about that when you called them?

So I have no kras,ras,or braf mutations of any kind. I also am not a candidate for any immuno therapy. I can how ever use Erbitux. I am curious to know if no Kras mutations means i am Kras wild? I am trying to figure that one out.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Tue Oct 30, 2018 8:50 am

NHMike wrote:I reread the original post and see that you were looking for something closer to Chicago so MGH wouldn't really help (outside of slightly less traffic). I only found out when I did a search on Mass General Hospital and Hepatic Arterial Pump and found the page. It may be that a similar search for hospitals closer to you and that are top cancer hospitals would find some other positive hits.

Thats ok Mike, i want people to post any hospital they know of anywhere! It may help someone else get that treatment.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

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Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Hospitals that install HAI pump?

Postby Jack&KatiesMommy » Tue Oct 30, 2018 9:36 am

Dr Kemeny at MSKCC only requires that you travel to MSK every 4-6 weeks. You can have your pump filled locally in between. Please follow up with MSK as they are the leader in this treatment and I highly recommend that you seek treatment there if at all possible.
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(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,

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Hospitals that install HAI pump?

Postby heiders33 » Tue Oct 30, 2018 10:03 am

Yes, KRAS wild means you do not have the KRAS mutation.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Tue Oct 30, 2018 11:13 am

heiders33 wrote:Yes, KRAS wild means you do not have the KRAS mutation.

Nice, so maybe i can get in that trial! I am waiting for Kemeny’s nurse to call me back to set up my appointment. My ONC just sent her all my records. I can’t wait to get in to see her. Im hoping they can figure out how to give me a resection and that pump.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Hospitals that install HAI pump?

Postby radnyc » Tue Oct 30, 2018 11:24 am

As someone who had the Codman pump for five years, I asked for it to be removed, I find it odd that it was allowed to be decommissioned. It’s clearly a well designed device that was successfully used for decades. It requires no batteries and only needed maintenance once every three months. With the hundreds of millions that MSK has at its disposal why couldn’t they have reached an agreement with Johnson & Johnson to continue the pump’s production? I think there are other interests involved here. It’s unfortunate.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
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 2011
HAI Pump removed Dec 2015

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Tue Oct 30, 2018 12:03 pm

radnyc wrote:As someone who had the Codman pump for five years, I asked for it to be removed, I find it odd that it was allowed to be decommissioned. It’s clearly a well designed device that was successfully used for decades. It requires no batteries and only needed maintenance once every three months. With the hundreds of millions that MSK has at its disposal why couldn’t they have reached an agreement with Johnson & Johnson to continue the pump’s production? I think there are other interests involved here. It’s unfortunate.

I agree. I think its border line criminal that that pump was discontinued. You can see the trend on this website alone of stage 4 survivors, most had that pump! I believe for me to have any shot at NED i have to get one. ConGrats on your NED it must feel amazing!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

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

Re: Hospitals that install HAI pump?

Postby hiker » Tue Oct 30, 2018 1:43 pm

If you haven't done so yet, get on the phone with MSK and try to get Dr. Kemeny as your oncologist...Now. Like Heiders33 said, Dr. Kemeny has a trial for KRAS Wild that combines the Codman HAI pump with Folfiri + vectibix. MSK has a limited supply of the old pumps and they are going exclusively to patients in this trial - I am one of them.

I'll be happy to answer any questions you might have.

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

gfpiv
Posts: 157
Joined: Tue May 25, 2010 9:24 pm

Re: Hospitals that install HAI pump?

Postby gfpiv » Tue Oct 30, 2018 7:10 pm

Mike, for what it's worth, I think you're doing exactly the right thing to give yourself the best fighting chance to beat this thing, despite the huge inconvenience and cost. And I'm incredibly frustrated on your behalf about the discontinuation of the Codman pump...IMHO it should be borderline illegal not to allow another company to use the patent to produce it "generically"...we're literally talking about lives in the balance. Of course, it all boils down to money...Codman pumps are relatively cheap to make, last a long time, and only have a limited universe of consumers (300 per year, reportedly)...so why would they care that much about continuing to produce them if it didn't add much to their bottom line? I wonder if J&J company's calculus might change a little if the CEO or a member of his family developed a case of stage IV colon cancer?

Sorry for the cynical attitude, I just wish more patients had the option of this criminally underrated treatment that has given me and so many others here a new lease on life. In any case, I hope that whatever treatment path you take, you have a long and happy future ahead of you too. And kudos for taking the responsibility of educating yourself and being your own best advocate.

-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Hospitals that install HAI pump?

Postby HopeForJesse » Wed Oct 31, 2018 9:58 pm

If you can get in with Dr. Kemeny, do it despite the distance. My husband has been in her care 2.5 years and we meet patients from all over the country every time we go. Best of luck and keep us posted.
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Wed Oct 31, 2018 10:17 pm

HopeForJesse wrote:If you can get in with Dr. Kemeny, do it despite the distance. My husband has been in her care 2.5 years and we meet patients from all over the country every time we go. Best of luck and keep us posted.

So my latest update is im flying to NewYork on 11/7 to meet with her to discuss HAI pump. They asked me today if i am clise to NorthWestern hospital in Chicago as they would be able to service the pump. I am really happy for this opportunity.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Hospitals that install HAI pump?

Postby heiders33 » Thu Nov 01, 2018 6:45 am

I will be there on November 7 as well, getting treatment. Maybe I'll see you in the waiting room! Great to hear about Northwestern. I'm still curious to see how other pump programs adopt the Medtronic pump. I'll just have to ask Dr. Kemeny's team about it.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Hospitals that install HAI pump?

Postby NHMike » Thu Nov 01, 2018 7:20 am

cartech78 wrote:
HopeForJesse wrote:If you can get in with Dr. Kemeny, do it despite the distance. My husband has been in her care 2.5 years and we meet patients from all over the country every time we go. Best of luck and keep us posted.

So my latest update is im flying to NewYork on 11/7 to meet with her to discuss HAI pump. They asked me today if i am clise to NorthWestern hospital in Chicago as they would be able to service the pump. I am really happy for this opportunity.


That sounds like a great solution. It would be interesting if MSK has a list of hospitals that they work with in this way.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Hospitals that install HAI pump?

Postby ginabeewell » Thu Nov 01, 2018 9:53 am

My doctor was out this week but I got this answer back when I inquired about the pump:

"I discussed this with Dr. Stein. She said that we do have the option for HAI pump, and you would have to see a surgeon for consultation to determine if the pump would be safe to insert and effective for your liver disease. Dr. Stein said that once we do the first round of scans, and we see that the chemotherapy is working, that would be the most appropriate time to make a referral for liver-directed therapy. She said if you have any further questions about this, she is happy to discuss at your next appointment."

This plus your note above suggests that NW would refer to MSK for pump placement but could administer locally.

I just did my 3rd cycle of chemo so I have one more before a scan.

I highly recommend Dr Stein if you need a NW oncologist. I started with Mahalingam, and was unimpressed with his "we will try to keep you alive 2-3 years" vibe. Mulcahey gets good ratings - but NOT from stage 4 patients.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hospitals that install HAI pump?

Postby cartech78 » Thu Nov 01, 2018 10:44 am

ginabeewell wrote:My doctor was out this week but I got this answer back when I inquired about the pump:

"I discussed this with Dr. Stein. She said that we do have the option for HAI pump, and you would have to see a surgeon for consultation to determine if the pump would be safe to insert and effective for your liver disease. Dr. Stein said that once we do the first round of scans, and we see that the chemotherapy is working, that would be the most appropriate time to make a referral for liver-directed therapy. She said if you have any further questions about this, she is happy to discuss at your next appointment."

This plus your note above suggests that NW would refer to MSK for pump placement but could administer locally.

I just did my 3rd cycle of chemo so I have one more before a scan.

I highly recommend Dr Stein if you need a NW oncologist. I started with Mahalingam, and was unimpressed with his "we will try to keep you alive 2-3 years" vibe. Mulcahey gets good ratings - but NOT from stage 4 patients.
Thanks for the update Gina. I was happy to hear that of i have msk put pump in that northwestern can service it. Talk about lucky. Im going to MSk on the 7th of this month to talk with Kemeny about having it done. I will let you know how it works out..
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20


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