Hospitals that install HAI pump?

Please feel free to read, share your thoughts, your stories and connect with others!
cartech78
Posts: 37
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 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.

cartech78
Posts: 37
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 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
Jack&KatiesMommy
Posts: 520
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 (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

heiders33
Posts: 306
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.
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

cartech78
Posts: 37
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 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.

radnyc
Posts: 306
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 '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

cartech78
Posts: 37
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 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.

hiker
Posts: 73
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-present
Clear of cancer since surgery

gfpiv
Posts: 156
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

User avatar
HopeForJesse
Posts: 245
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
4/18 CEA 87 :( 5/18 5 days SBRT radiation to sternum CEA declining again 6/13/18 21.1 10/22/18 surgery to remove zyphoid process met
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

cartech78
Posts: 37
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 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.

heiders33
Posts: 306
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.
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

NHMike
Posts: 1788
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; 9/8: 1.8; 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
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

ginabeewell
Posts: 25
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.
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 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 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.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], juliej, LeonW, zx10guy and 55 guests